Question 5 Responses

Where Can I Turn for Services? (Services)

Themes from Responses to Question 5

• Increase the accessibility and utilization of services
• Parents/caregivers need assistance navigating complicated service systems
• The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
• Need for better services to foster community inclusion of those with ASD
• Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
• The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
• Disparities in access to services should be addressed
• Access to early intervention services is a priority
• Improve the quality and availability of services within the educational systems
• Improve the efficacy and cost effectiveness of services and service delivery
• Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
• Families need access to services to reduce the mental and emotional burden of caring for those with ASD
• Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
• Focus on the treatment or cause of autism rather than the delivery of services
• Need for an adequately trained and compensated workforce to improve available services and service delivery
• Improve the service systems and service models
• Need to be more and better access to specialized services for ASD
• Multiple Themes Addressed

Increase the accessibility and utilization of services.

Respondent	Response
stella avcisoy, ARC of Seneca Cayuga	As a parent who has been an advocate for over thirteen years, service access and utilization are always at the top of the list. What good are services if we can not connect with them!
Charles Doran	services access and utilization (and the ability to pay for said services)
Dwight Zahringer	Service access (promptness; not waiting weeks or months to go through the "system")
Jennifer Muyot	we have a federal insurance which ironically does not fund for ABA services. There is the Regional Center which does not give adequate hours for therapy as compared to when you do have insurance coverage. Regional Center also does not fund Center-based ABA services and social skills group which are also integral parts of therapy/intervention
Jaime Z, CVR Autism Academy	The most important services that should be utilized are: parent/support groups, Applied Behavior Analysis, therapists, and respite.
Kathy Wilcox, ACCES-VR	Many individuals with ASD "fall through the cracks" and are not found eligible for OPWDD services due to variable levels of functioning in different areas; however many of these individuals also desperately need the supports and services that could be provided by OPWDD. In addition, transition-age youth who graduate from high school often face an immediate loss of supports and structure as they enter the adult world, which cannot be supplanted by Vocational Rehabilitation services alone. Many adults with ASD struggle with failed relationships/marriages, parenting challenges, and chronic loneliness, even if they are able to maintain employment and independence.
Amy	Service access & utilization
Anonymous	Services either don't exist, are too sparse, or don't address the needs of all with ASDs, particularly once 18 has been reached
Anonymous	Service access and utilization should most definitely be the top priority. The U.S. is riddled with huge service gaps, which means thousands if not millions on the spectrum are not receiving services that could greatly improve their lives.
Anonymous	service access and utilization, particularly for adults.
Michelle Guppy, Texas Autism Advocacy	States do not provide services needed that are paid for by medicaid - ABA treatment, supplements, holistic interventions that work! They are not equipped with trained staff on autism spectrum disorders.
Annette Bradshaw, Parent/Speech-Language Pathologist	Transportation services!!!!
Sarah Hunter	I primarily coordinate services for adults with autism who do not have intellectual disability, and I find these services are sparse and hard to access. In particular, many people need help with transportation and housing.
Shannon Young, University professor	Medicaid Services offered through the Office of Developmental Disabilities (this is in the state of NY) have helped me a lot to have support in caring for my disabled child and providing me with much needed relief.
IEP parent Advocate	Currently in NYC there exists no citywide programs for students 18 months-21years old that provide access to education that incorporates education, Family well being and community inclusion. There are no city wide programs in NYC with Students getting educational and integrative interventions currently.
Annette Kelly	ABA must be available to everyone. BCBA's and their techs must have oversite through licensing and regulatory affairs.
Anonymous	All of the above. We have struggled to gain access to services due to a wrong diagnosis the detrimental effect this has had on my sons education, health and wellbeing and on us as a family has been huge. He has not been in full time education since P2 and prior to that he was excluded numerous times and being restrained. His behaviour being put down to my lack of parenting and him being a bad boy as deemed by professionals. Even now he only attends school 1hr a wk and alternative placement (farm) for 3 mornings a wk 9-12. He is not being included into the community as our children lack services and a specialised school for those that cannot cope with mainstream Educ due to class sizes, sensory issues lack of understanding, training
Betsy Berman	Service access and utilization
Anonymous	Service access and utilization.
Anonymous	There is lack of quality after school support
Anonymous	Service access and utilization
Jen	I've discovered my private insurance doesn't cover ASD therapies because the ACA doesn't require it. First, the ACA, if it survives the next president, needs to be changed to require insurances to cover therapies. ABA is research-based and is proven to work. Insurances will cover self-induced diseases, like obesity, heart disease, cancers, etc., but won't cover children who can't help what they've been given. If you apply for help, like ATAP, you are again on a waiting list. It's essential we get these therapies as early as we can.
Ken Ashley	Access to service can have long waiting periods, 10+ years. Services are subcontracted out to private businesses that focus more on their profits than assisting people.
kimberly lockhart	Little to nothing is available for childcare for children with Autism. It is endlessly frustrating to me to be told by daycare centers that they cannot accommodate my son. In spite of ADA regulations that prevent discrimination due to disability, all a daycare needs to say is they can't "accommodate" my special needs child to make themselves exempt from ADA rules. I'm a single mom, and my ability to find child care impacts my ability to work and what kind of jobs I can take to support my family. I know few working moms who have Autistic children as most have had to leave the workforce to care for their kids. If there were better options for childcare I'm sure many of these parents wouldn't need the degree of other services (Medicare, DDS, Social Security) they're using to cover their current needs.
Anonymous	Service access and utilization
Anonymous	Many people have difficulty accessing services. Services are dismal and extremely difficult to get. Life skills training is absolutely necessary in high school and often gets the backseat while the focus is on test-taking. This leads to unprepared adults who have difficulty entering the workforce and need to be taught basic soft skills. Hard skills are also lacking by the time an individual graduates high school or college. Work training programs are beneficial, as well as strong incentives for employers to hire people with disabilities.
Leroy, Ph.D Candidate	Basis demographic concerns are geographic location of practices, which often times dies NY have the resources to make referrals and or support from a larger medical support system, such as a hospital or psychological testing services.
Leo Yarbrough JR	Services should be accessible to all children as the priority. There needs to be more money spent in every city in this country on services for children.
Nancy Roberts	I do not know. We had testing and results done. That only got me to where we are now. With the realization there is not any help near me less then 1.5 hours away. Online learning only goes so far when you have to battle everyone and everything around to get help even in the school system.
Anonymous	As much as ABA is touted as such an important tool to help some with ASD, the reality is that many schools do not offer this service. ABA should be mandatory for anyone with Autism. Socialization programs are also very important but often times only given to select few due to lack of funding. Again, finding a way for such programs to be mandatory would allow not only people with Autism to integrate more fully into society but also help society understand what Autism is.
Patty Hooper	There is almost nowhere to turn for these kinds of services in Central Illinois, especially now with the budget cuts. We desperately need more services!!
Anonymous	Needs to be a service full stop. There is no specialist provision for those without an EH P or statement yet because of my sons communication problems he can't be assessed for one. Blatant discrimination.
MaryAnn Vericella , Mother	We need more schools and camps and aftercare. Insurance should pay for MRI's to see abnormalities in the brain
Alisha Gomes, Parent	Having in home service changed our life for the better they taught us so much i dont know what i would of done with out them.
Crystal Reuter	Service access and utilization education
Anonymous	The most important priority for policy is to increase access to a full range of different forms of behavioral health treatment, including developmental relationship based approaches. There has been advances in promoting ABA intervention, including increased funding, however ABA is not effective for all children or all types of challenges. Developmental relationship based approaches now have significant research evidence of effectiveness and families need to be aware of this option for treatment.
Anonymous	Service access and utilization
Ray	There are little resources for autistic children and even fewer for autistic adults. Autistics often need quite a bit of support, but there are no good widespread and readily available programs for autistics to receive support from. There simply need to be more programs.
Anonymous	Access to appropriate amount and level of services without having it being limited by SD saving money.
Elena	Please notice the focus of this question on families and children. Three guesses where I will say the gap is. You have an entire lost generation of people not getting services. Autistics after the age of 18 are not getting adequate services. This is NOT a childhood disability - it is a life-long disability.
Anonymous	Lack of services for children
Anonymous	Services are needed to help autistic people thrive in the mainstream
Sue McCullough, parent	making information about available services easily accessible to families/clients. expanding all services! we've had very good inclusion experiences in our community (Oakland, CA and OUSD), but I understand that this isn't as common as it ought to be.
Glowyn Roughton, Emg consulting	Service access
T	Autism Speaks is the first group that parents find on the internet after they get the diagnosis. Their website should do a better job of listing the support groups available in the larger metro areas in the US
Renee Vogt	Most important services research, policy and delivery I believe are: 1. ensuring autistic adolescents and adults are informed and have access to services to help them plan for the future, receive job training, help with job placement, and support as needed in the workplace. 2. Health & Safety for all autistic individuals 3 Public education teachers that can provide resources and support to families of autistic children
Anonymous	Increased awareness and access to sleep resources in English and Spanish
Eileen Henot	Clear studies and guidelines on which individuals with autism require out of home placement at an early age so that states can spend more resources on supporting them and fewer on periodically pulling the rug out from under them.
Anonymous	Services for teens and adults.
Tammy	There is a lack of diagnostic resources for older kids and adults.
Jennifer Burke, parent	Priorities: -services for all ages, including adults
Michele Hays	Clarifying that services might be warranted even if a child does not meet the full criteria for autism, or that a child who does not meet the criteria for autism at one age might need re-screening later, as social development varies widely.
MRJ	i am fortunate to live in county where my son has access to services both pre-k and now as he enters kindergarten. It's my understanding that not all children have that across country. Given the prevalence of autism and those on the spectrum I have witnessed first hand how helpful having these interventions can be. The other thing is getting to the root cause of what causes this. Continuing tesearch to locate the cause(s) is important.
Heather Parsons, American Occupational Therapy Association	We recommend the IACC consider how best to ensure that a wide array of early childhood services providers, including occupational therapy practitioners, play a key role in early detection and diagnosis of autism spectrum disorder (ASD).
Margaret Woch	The science is not as urgent as the help for those who are already living with ASD, and need a home, better schools and protection from being exterminated by assisted suicide laws that don't deal their lives valuable.
Lucy Beadnell	Long waiting lists for public services and limited availability of existing services. Poor development of inclusive classrooms and ways to adapt typical learning and work environments to the needs of people with ASD.
Jessica Philips, Commonwealth Autism	Policy: Many people with ASD cannot access intervention/services because their medical insurance doesn't provide coverage for behavioral intervention.
Faith, PLAN parents Boston Autism Program	Behavioral, educational and technology based and interventions are intertwined and all require further research, new and different approaches to communication so the Autism community feels less locked in and are more able to contribute!
Anonymous	The ability to receive services from the county is so incredibly difficult because the counties are under staffed, overwhelmed with changes in programs and backlogged.
Anonymous	Too much focus and funding is spent on training We need real services now
Michael Buzzard, Parent of children with Autism Spectrum Disorders	Lack of resources and access across the board on these.
Mayra Zamora	There are not that many places to turn to for services. Long waitlists and scarce providers make it difficult for parents to access services for their children. It is also
Anonymous	Access to services is needed. Access to child care for children with special needs. There is only 1 in our district with a wait list of many years long.
Rebecca	There are practically no supports or services for adults on the autism spectrum, we are treated as though we don't exist once we turn 18.
Morgan Smith, An Autistic Adult	There needs to be services for autistic adults as well. Children become adults and most of us need these services still. Most services stop being available once the person is 18-21. Of course, we need support groups for autistic adults, autistic children, and parents of autistic people. We need more services designed by Autistic people for Autistic people. Many of us find it hard to get a job because of difficulty with eye contact(which isn't something we can be taught, it cause lots of us actual pain) and other things, so services to help us get real quality jobs in fields we enjoy and are good at is something we definitely also need. We also need services making it easier to get service animals. Most of the time, autism service dogs are only given to children, while many of us need them into adulthood also.
Anonymous	Need a place to go for services where the research is not so difficult and they need to be true treatments and not companies preying on the parents who will pay anything and try almost anything to help their child
Cathy Peterffy, peterffy	Local and accessible
Judy, parent	Large gaps in services for pre-teen age group and young adults. There is a lot of attention given to early intervention and the elementary age group, but there is a huge drop off once kids reach middle school and even a larger drop off after graduation.
Anonymous	There is a need to improve service delivery of individuals with ASD and co-occurring disorders, especially mental health diagnoses.
Nicole Miller	There's a huge lack of services in my state of Michigan. Children do not get their needs met.

Parents/caregivers need assistance navigating complicated service systems.

Respondent	Response
Aimee Combs	Providers need to equip parents with resources and information about their states early intervention program, special education programs and parent Training & Information Centers.
Cheryl Fortunato, Parent	There needs to be a better way to tap into resources. It's exhausting raising a child with autism, and it's a constant hunt and peck to tease out practitioners who are able to achieve progress and accept insurance. Not everyone can pay out of pocket.
Anonymous	This is one of the biggest areas of need. I work in the public health arena overseeing services for children/youth with special needs, as well as having a young adult with ASD. Number one concern of parents - how/where to access information and resources; how to navigate the system; how to successfully advocate for needed services.
Anonymous	For me time is the biggest limiting factor in accessing all the services my son needs; if our public education did a better job of providing comprehensive, quality services, more families would be reached...you have to practically have a degree in autism and advocacy to be able to manage school, therapy, etc - something some parents don't have the time or skill set to achieve, and the single best place to give kids access to everything they need is at school.
Karen Sanchez	Systems need to be in place to help the asd person and their families. There is a huge need and it is only going to grow.
Anonymous	knowledge of available services financial access to services support using insurance appropriate education health and safety availability of specialists community inclusion family well being
Lisa	Pediatricians should be providing this information before school age. Insurance companies should be mandated to pay for proper training for parents. Parents should be paid for leave they have to take from work for medical or educational appointments related to a child's disability.
Helen Angela Mezzomo	Families need to know the roles of SLPs, OTs and PTs in the treatment of ASD. They need to know what they can and cannot do to help alleviate symptoms and that there currently is no cure.
Bonnie Polakoff, Educational Advocate	Most parents are in shock and disbelief upon receiving a diagnosis of ASD and they also feel overwhelmed in terms of what to do and where to go. Educationally speaking, parents need resources so that they can learn to advocate for their children in the schools. Unfortunately, many schools try and give children as few services as possible, in order to save money -- despite the child needing a very robust program of services so that progress can be made. Parents need to learn what their kids need and how to advocate for services right out of the starting gate and there is no PR in terms of this and advocacy classes are few and far between.
Arzu Forough, Washington Autism Alliance & Advocacy	It would be important for parents to understand (and have it relayed to them in an informed, thoughtful, empathetic manner) the costs of healthcare for children with ASD vs. neuro-typical children. Knowing the costs, and benefits of medically necessary tx when prescribed, could help parents make more informed decisions on seeking out the best funding sources/deciding on insurance plans to best cover their child's healthcare needs. In the absence of this consultation from the medical community, some parents receive the diagnosis and then look for public assistance or grants to help fund any out of pocket costs (which is not very sustainable, or always practical), and some parents opt for alternative types of treatment instead.
Anonymous	Educational opportunities for parents of children with autism.
Cory Gilden, parent	There needs to be more training provided to parents about the IEP process and special education in general. Very few parents read the procedural rights and safeguards booklet, and even less have time or energy to do what is needed to make sure they are an effective and valued member of the IEP team. School districts should help educate, but they don't.
Korri Ward, Northern Nevada Autism Network	Parents often believe that their medical provider or school will provide them with referrals to community services or necessary treatment. Unfortunately, many times this is not the case. Instead of relying on doctors or schools our families must learn to approach other entities that offer a one door approach to all community providers and services. Perhaps the IEP or EIS team must include someone from the community - in Nevada this could be someone from Aging and Disability Resource Center- who will be responsible for providing one door services. (The IEP handing the parent a brochure for this service should be considered insufficient.) The resource centers should be funded, so that they can provide this service across EIS and school districts.
Laurie	Services can be found online with Autism Speaks. Services can be obtained at public school systems with federal funding You can also seek help at schools for Autism, even though there arent many.
Faith McGinnis, parent	Loaded question. If you asked me before I started all this I would have said there are tons of services! Now I am a little more cynical. There are hardly any specialized services and advocate programs that are easily found. It has taken months and years for me to realize there are advocates. The IEP process is ridiculous and at every turn as they get older they cut off more and more services. I would focus on getting more early intervention program services in and having information about it be part of well visits and doctor visits. Provide info at the hospital when babies are born. Be proactive!
Sara Kleber-Lowery, Centerstone	There is a lack of knowledge among families about the available services, how each is funded, and in turn accessed. The wait time in Indiana specifically for the Medicaid waiver as administered through the Bureau of Developmental Disabilities and Services is still rumored to be 6-10 years. Even when the wait is over and a family is approved for services most service providers are geared toward assisting the adult population when really their needs to be more available for children and families as the wait time continues to decrease.
Suzanne kollar, Parent	Education and health insurance assistance, parent training
, Parent	Services are difficult to access, underfunded, manned by gatekeepers rather than welcoming arms, and extremely intimidating in terms of the amount of preparation and paperwork required. In some states children have been booted from services becaused of misleading and poorly worded forms and buget pressures from above. Families with a child with asd need security not constant requirements to prove their eligibility and threats of being cut off. Many families forego services because of shame and discouragement and rely on their osn resources to do what they can. Early intervention is critical but in my opinion every child with a developmental delay should be followed by s developmental pediatrician and given a yearly psychoeducational exam at no cost to ghe parent. The transition to adult programs snd especially jobs and housing should be driven not by the individual family but by the team tasked with care of that child. Too much is foisted on the parents'shoulders.
Heather Winterbottom	Advertise and educate people regarding services available in their state. States have Autism Societies which are good places to start
Eric J Jorgensen	Families with a child(ren) with ASD are often islands unto themselves, unsure of where to start or what resources are available. Often they are overwhelmed by the information they find on the internet. How can we consolidate the information and provide a handbook/roadmap outlining a general approach for them to take from early symptoms through diagnosis and transition.
Anonymous	Working for a company charged with helping the ASD community specifically, I can say that I have a better idea of who I should be contacting within my state to inquire about assistance. I can not say the same for my neighboring states, however, and this basic lack of knowledge that crosses state borders should not be the case. The nation should have clearly defined service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion that every constituent could easily know of firsthand. Just as we all know that there exists Medicaid in our country, for example, we should all know where to turn for basic knowledge when faced with an Autism diagnosis. The push to understand ASD needs to become universal with the rates of diagnosis increasing drastically from year to year.
Linda Tortorelli	Every geographic region should have "System navigators" that help families navigate the complex health, educational and human service systems.
Anonymous	I think connecting with service systems and then empowering parents and people with ASD to access/utilize them appropriately is important. I don't think many parents know to ask about training or how progress will be defined/monitored.
Eugenia Bednar	Since everything is turning to privitization now and my son is grown, it would be nice if instead of having to book appointments to try to meet these private people when you don't have time or try to meet them at a fir where it is too crowded, there was a simpler way to find out what services are offered by each private provider, who they are instead of trying to do a search on the internet or try to use the county website that is too cumbersome to use. There has got to be an easier way to do this that doesn;t waste time when everyone has to work instead of being able to stay home and take care of their family member and still be able to afford to pay the bills. Local officials never gave the correct information to the parents to better equip them with the proper knowledge to be better advocates for their children. Parents need this vital information hen their children are first identified with disabilities.
Anonymous	'Where can I turn for services' is an excellent question for me as an adult female, as there appears to be no answer in my heavily populated area of the U.S. There is only one group for all adults -- a very, very broad category, the whole autism spectrum -- to fit in one support group. Exclusion, minimization, and other poor treatment of milder autistics by relatives of severely suffering autistics appears to be a problem too. Certain people seem to only compare milder autistics, who often are gifted in certain areas, to greatly suffering autistic people for whom autism is uniformly negative. However, why are the milder autistics not being compared to just a basic human quality of life standard used by society generally? I am adult and female, and I am having significant problems even getting through the diagnosis. I do not have a relative who can remember anything much of what I did as a child. Per the DSM 5, this seems a game-stopper. Lack of a diagnosis knocks out this whole category' No services. Basic information about female autism never reached me or my therapists or doctors. I was the one to bring up the possibility, with a trusted doctor. The doctor immediately said it was a very good match. Self-knowledge is crucial for many autistic people to begin work on their issues, even if a little info on self-help is all the funding that is available.
Margaret Woch	Early diagnosis and family assistance in the form of help with local, state, federal and private forms of services that spans the lifetime of the individual with ASD.
Amy belzile	Identifying underlying medical issues that contributes to behaviors that cause autistics behaviors. And a protocol for medical community to follow instead of accepting autism as the diagnosis. Too much time is wasted by parents not knowing what to do next.
Anonymous	Honestly? Where to start. I consider myself an educated person. I did so much on my own after my son was diagnosed 6 years ago. I think there needs to be much more education on resources -- who to go to for what... how to prioritize all the child's needs. I have found my way (mostly) but it is really hard in the beginning when you are on your own trying to figure out everything.... Then I would follow this up with educating the doctors/panels... they should be telling parents of the newly-diagnosed where to talk to other parents, where they can look for answers to questions, etc. I can't reiterate enough that parents need to know where to go. As a mom with a very strong gut feeling, I was dismissed first by other parents, then my son's own pediatrician.... Finding out where to go was ALL my own effort. Once I found ONE right therapist, she led me to the others but it took far too long to find the first person to help me.
Artea Lombardi, Parent of Eden Autism Services	Parents must continually research information, check with various organizations that are knowledgeable in the area of autism, attend various conventions, be aware of parent groups, join state councils, learn about behavior modification, take classes to learn how to control behaviors, research how nutrition affects the body and behavior, continue to support research development. Be aware of chemicals in the environment that affect our challenged children and adults.
Anonymous	Lack of effective leadership & education for families on how to navigate what treatments will be most effective & safe for children. No single reliable source of information; too many different "camps" on appropriate treatment.
Rita Pospisil, West Platte RII	Research, services and policy must continue in the areas of behavioral and educational interventions at preschool age. Medical/pharmacologic research would be the next priority. Remember these children need attention as early in life as possible to find strategies that will help them in various environments, home, church, school, town, etc.
Michael Buzzard, Parent of children with Autism Spectrum Disorders	Finding the appropriate resources is almost impossible for families to find and more importantly access. The ones that you do find are many times not able to give the services that are really needed.
Marge Blanc, Communication Development Center, Madison, WI	Helping families negotiate the maze! and not being fed the 'one size fits all' admonition to provide in-home services for 40 hours a week! Honoring families!
Diane Frillman	You cannot turn anywhere for services that are helpful and lasting. Seriously, I have been doing this for 17 years and I am here to tell you there is not ONE main resource that comes close to addressing my children's issues. I had to learn it all my self and that is the way most parents survive.
Diane Frillman	Information is necessary to understand Autism and what is happening. Seriously, there needs to be a website established to answer questions as to what is happening and the Do's and Don'ts of Autism. That information will have helped me tremendously when my children were toddlers. Instead, now, parents are the researchers, do you know how hard it is to raise two children with Autism AND have to do all the trial and error associated with that disorder? it is daunting. You can spend hours on the internet and still not find the answer to your question. Start a "JustAnswser" for Autism so parents can get the answer NOW, not after they have had a nervous breakdown, or simply shut their kids out because they have used all their imagination and resources to no avail.

The broader community needs to be better educated about ASD, to lead to better understanding and inclusion

Respondent	Response
Paula Varner	I think there should be a mandatory class that should be taken in all high schools regarding autism and the people that have it. The public (community) is still very ignorant about this disorder.
Roseann Schaaf	community inclusion
Sheila Stauffer	Court cases involving autistic individuals especially in guardians and GALS should be enforced with better knowledge and intervention programs/work programs for a person right after H.S. My son had a bad court case where his father won guardianship because of money and no one would even listen to me as the mother with regards to his welfare. He now sits at home for over a year doing nothing and is getting more depressed and suicidal.
Erika	There is a serious lack of autism education among the general public. Many non-autistic people have wildly inaccurate ideas about what autistic people are like. And many autistic people remain not only undiagnosed, but unaware of the reasons why they are struggling to succeed at life.
Anonymous	Please know that not just "I" need to understand. The whole population must be educated
Victoria Ekstrand, University of North Carolina -- Chapel Hill	We need federally funded research on media understanding and portrayal of ASD. Media representations of ASD individuals affect how ASD populations are treated in society. We need a public relations campaign for inclusion, backed by evidence-based research -- not just some kind of ableist-contrived charity messaging. These are individuals with tremendous strengths, who need different supports to succeed. I would strongly recommend funding media and public health centers in state universities to conduct health messaging research to identify what kinds of public health campaigns would help us change the conversation about ASD populations and enable them to be included, independent, and productive members of society.
Anonymous	Public education needs to receive a greater amount of training on how to work with individuals with ASD so that these children can be mainstreamed and included instead of isolated and pushed into other programs. There also needs to be neurotypical peer training to support individuals with ASD so that peers know how to help and respond.
Elena	The greatest damage that most of us experience is in the lack of understanding and empathy for what we struggle with. Public education!
Patricia Garon	Gaps in research seem non- conclusive and evasive.Behavorial recognition and it's many diversions are grossly unexplored. On-site support services and training are necessary in government, education, medical, Law-enforcement and public environments. Widespread public awareness is a safety measure for are Autism community as well as the general population.
Anonymous	There should be more education for our law enforcement on how to react to certain situations.

Need for better services to foster community inclusion of those with ASD

Respondent	Response
Anonymous	Community inclusion. In GA they want you to move to get services, not set them up where you want to live.
Brad Wyner, Rose-Mary Center	Community inclusion is important: Helping communities to better integrate people with ASD. From our experience, people are generally in favor of integration in theory, but do not want people with ASD who have more intense needs or presentation living next door to them, or working in their business.
Anonymous	The lack of community inclusion is of great concern to me.
Erika Liljedahl	All topics are relevant but community inclusion can help build tolerance and acceptance of community members, as well as help individuals with ASD find a place to contribute to society.
Jan Groh, EDS & MCAS pt, Aspie "cousin", writer	Community inclusion, which has to include public education of everyone, not just autistics. I.e, we don't have a warning label on us saying "neurodiverse", so everyone needs to be more aware not all think/feel/process alike and allow for more differences and be more accepting.
Jennifer Hane	Community inclusion
Resa Warner, Parent of 15 year old autistic son	My son has experienced only exclusion and low expectations for the last 12 years in the public school system. Both his diagnosis and the school are to blame. We should be trying to fix both.
Sara Luterman, Self-advocate	We need more research on community inclusion. Employment, housing, community interaction, and achieving as much independence as possible are key issues to achieving good quality of life for autistic adults.
Kai, Autistic adult	Support, acceptance, and accomodation for autistic people
Anonymous	Education of public about signs/symptoms of autism both in children and adults. It is a matter of safety for individuals who may display strange behaviors in public. Great need for enhanced services supporting employment and housing needs for adults
Anonymous	Community inclusion
Danny Raede, Asperger Experts	Community inclusion
Grace McCusker	Community inclusion
Julia Biagiarelli, Easterseals	community inclusion
Jilene Chivell Griffiths	Community inclusion is what our goal should be for people with ASD.
kimberly williams	community inclusion
Anonymous	Communist inclusion opportunities more efforts to make this possible with such things as education and training. This should be more purposeful and intentional.
Kim Mays , Individual	My feelings on this as their needs to be more interaction for children to belong to their community. Special Olympics is not enough to help socialization within their community and peers.
Stacey Ireland , Parent	Community inclusion
stanley scher, grandparent	Maximizing inclusion opportunities at an early age especially as they relate to social interactions is an important community priority. every child should have the opportunity to perform at his or her potential while minimizing social barriers to such achievements. The goal has to be to have a child perform at a minimum of of societal input in order to strengthen personal responsibility. This has to be done in such a way that cost factors do not become the overriding concern; rather, what is best for the individual is.
Angela Mai, MBA, Walden University Ph.D. Candidate, Public Policy and Administration	Understanding comes from gaining knowledge. Many people still hold significantly negative viewpoints about what an autistic is. Thus, they fear them and what they could do. Society needs to be educated as to the unique benefits that autistics can add to their communities. Research needs to be done to identify the common beliefs and develop appropriate interventions to educate. I am hoping that my current study will begin discovering some of those beliefs. I am researching the beliefs of hiring agents regarding potential autistic employees. For more information go to www.uniquelygiftedtalent.com
david may, KidstokidsII A NJ Non Profit Corporation	as stated in my last answer their are sadly limited programs for our kids that are developmental- lots of one off which are nice but! I also have a proposal to develop a "place" not unlike a college union- where all kids can come together to socialize in an inclusive environment. again willing to share the model. Again an issue of some funds and finding a facility to house it..
Jessica Philips, Commonwealth Autism	More research is needed re: promoting independence and inclusion within community in the areas of housing, transportation and employment.
Anonymous	community inclusion--Georgia has only group homes that are very restrictive or minimal oversight. Supervised apartments are needed for the in-between population. IT'S SCARY THINKING ABOUT THE FUTURE FOR MY SON WITHOUT ME BEING AROUND. WE NEED HELP!!!
Maureen Durkin, University of Wisconsin-Madison	What are the most effective interventions and policies to promote inclusion and workforce participation of individuals with ASD?
Pamela Harbin, Education Rights Network	Support existing community organizations to be able to support their own community members. Community integration planning should start early. Focus on autistic people of color.
Emily Ryan	Community inclusion. To me this includes inclusion of research that improves quality of life
Matthew Carey, Autism Parent	One word here for emphasis: adults. Adults. Again, Adults. The timeline for research to impact practice is long. We needed better strategies for supporting adults long ago. We absolutely need to put a huge emphasis here now. The adult population has as broad a spectrum of needs as children, but we seem to only recognize high support and job assistance as areas of need. 1) Studies (plural) of living situations for adults today so we can understand what works and what doesn't work. This can not be emphasized enough. We have very little data in this area. 2) Specific studies to explore ways to support non and minimally verbal autistics in adulthood. 2b) Studies on how to insure community inclusion opportunity for non and minimally verbal autistics. This is an often high support population that can easily be sidelined into placements that offer little or no community access. 3) Continue to study the transition to adulthood as this handoff is badly handled. 4) Study the capacity of adult programs relative to the need. Such a study could bring attention to the lack of capacity we face. 5) Study medical service delivery to autistic adults. 6) Study medical service delivery for individuals of all ages who are non or minimally verbal. >70% of information used to diagnose is from verbal communication with the patient. Sensory issues can very much limit diagnosis (how do you diagnose an individual with atypical pain response)
Carol Fruscella, Parent and Legal Guardian	I believe in community inclusion. I think it is a very important piece for over all quality of life outcomes. With that being said... I also believe that when my son struggles at his 'sheltered workshop', sometimes needing an extra 20 minutes to try to walk to his break room, that the general population and workforce moves at such a pace that the time needed for my son to transition from place to place, not only makes him not employable... he also sets him up to failure and honestly mocking and teasing by members of society that have no understanding of Autism. My sons workshop is sheltered so my son can have safety and supports in place to be able to do as much as he can. With the current CMS changes in our state, I see no safe work environment at this time. So instead of 'inclusion', my only choice might be that once his workshops doors close... ( and his workshop is to be closed ) That will mean my son will NOT have the opportunity to be out of our home five days a week. My son senses no danger in the real world. He needs medical supports at times. What is needed for real world inclusion of others will remove my sons successful environment... and in return he will lose what little daily normal he looks forward to in his daily life.
Anonymous	More service organizations should be welcoming of autistic adults. When autistic children see that autistic adults are talked down to, dismissed, ignored, and much worse, they can see that is what to expect when they themselves become adults. Also, just because an adult has never received services, doesn't mean that everything is fine. Autistic burnout is extremely common among autistic adults, as they "just try harder" for decades, to fit in, to be "indistinguishable from their peers," and that doesn't work. Even if organizations don't specifically help adults, they should be willing to at least talk to them and try to figure out solutions to the issues at hand. Just because some adult autistic people are articulate and can tell what their problems are, doesn't mean they can solve them by themselves.
Anonymous	Community inclusion, more appropriate training and jobs for young adults. Giving them the opportunity to succeed and have access to jobs that can also have more promise.
Anonymous	The most important thing in this area is providing assistance for autistic individuals in communicating with people about their condition. It would be amazing if campaigns tried to talk about what autism actually is rather than letting the public believe that autism is mostly a savant syndrome or a childhood illness.
Anonymous	Programs aimed at making communities more inclusive rather than at "intervening" with autistic individuals.
Pamela Harbin, Education Rights Network	Community integration planning should start early. Focus on autistic people of color.
Anonymous	Community inclusion
amber dorko stopper, ninjagoat nutritionals/fatCoffee	community inclusion
Anonymous	Community inclusion. This is extremely important, as the ASD individual gets older and realizes how excluded he/she is. We need to change our community so that it is welcoming to ASD individuals and values their abilities. This is critical.
Anonymous	Community inclusion. Mental health issues stemming from isolation and bullying. Providing safe spaces to be ourselves. Community education. Anti bullying. Adult workplace and housing anti discrimination policies.

Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers

Respondent	Response
Anonymous	Independent centers would be nice not beholden to state or federal agencies.
Anonymous	Can there be more peer-to-peer, mentoring, coaching, apprenticeship, think-tank, co-op, etc. type of support and community services which promote collaborative learning to compliment the excessive use of standardized top-down expert models?
John Cullison	Obviously, taking care of millions of autistic kids is going to be a huge drain on resources. We need help taking care of the victims of the largest medical tragedy in history. Just day-to-day care. We need to plan for the adults. They require constant companionship (not supervision). They need friendly help, not authority figures. Services need to be tailored to let them lead the kind of lives they want to lead, not force them into some programmed idea of what's best for them. We dropped the ball on what's best for them already. Let them be who they are with encouragement, not expectation.
Karen Delaney	Most services we've encountered in rural upstate NY are geared to higher functioning kids/teens and although most have been willing to try meeting our son's needs they all ended up saying it really wasn't a good fit, they didn't have enough staff for 1:1, the trained staff are already busy, etc.... NY state's self-advocacy goals are difficult at best if you are already busy with a special needs dependent....you are expected to find, hire and train your own staff, find your own housing if choosing to be independent or live out of the family home.....If I had time to do all of this and a guarentee that the people I train and hire will stay a decent amount of time perhaps but it's not very realistic. Our community integration people that we trained and worked intensely with had a tendency to fall off the face of the earth after a few weeks - they were sick or they were moving...or they simply quite coming and didn't return your calls. I doubt we were that difficult to work with - if anything I think they were bored with just walking around and repeating simple lessons over and over again...but repitition is the name of the game in ASD.
Star Ford, Divergent	The biggest missing piece in the services world is individualization. It is often the case that a client of the service system needs services that "we don't do" but they don't need things that the system is accustomed to doing. For example, someone may need 15 phone calls a day but no in-home support, and the system might say "we don't do that". Everyone is different in so many ways, but the system works too rigidly to provide only a handful of poorly matching services.
Brendan Clark	Services must be improved and special attention provided for the most challenging cases. This is not to the detriment of high-functioning ASD cases, but low-functioning, multiply-handicapped, and particularly ASD adults with violent behaviors require dramatically more support than is available. In such instances families are faced with the impossible decision to go down with the ship - these cases do eventually preclude work and other productive efforts by parents and siblings - or abandon their family member to an uncertain institutionalization. The priority in services needs to creating solutions tailored to the most difficult ASD cases.
Molly Whalen	Huge gaps in communication and coordination for families from young children to adults. There needs to be a coalition of efforts from healthcare services to schools to adult services, etc.
Anonymous, Downstate U. Hospital Brooklyn	I have the same concern as question 4 that there is a gap between special ed teachers and other systems
Tammy	I don't think services are of help as ever child with ASD is different and the people running the services only know what they e been taught with usually is not much.
Anonymous	Any agency that can help including the ones listed above for services.

The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access

Respondent	Response
Vince	We fight our insurance company every single week it's incredibly draining. Access to MAPS doctors is expensive and almost always out of pocket. We could use 40 hours of speech therapy a week, but we get about 30 minutes. ABA is the only thing covered, and it's a few hours a week of a paraprofessional. We need help getting more services covered. I would much prefer a system where we get a fixed amount and the family can choose what services are best, rather than fighting every nickel and dime and going with poor options "because they're covered" while excellent options cost an arm and a leg.
Anonymous	Services that I can afford.
Anonymous	Mandatory insurance coverage for all children with ASD under state or federal insurance. Services covered under insurance.
Kristy Powell	There's a huge gap between ABA therapy recommendations for ASD and insurance coverage. My federal insurance is supposed to begin covering ABA in 2017, but I fear that even w coverage, there aren't enough ABA providers to handle the increased case load.
Anita Hawks, autism mom and advocate	We have been told my son requires intensive Autism therapy but none of his insurance will cover the cost, which we can't afford out of pocket. Services diminish after about the high school time frame which is when we need them the most.
Anonymous	Affordable healthcare and medicines Affordable transportation and food
Ann Hart	We need a federal autism insurance mandate so that employers and Medicaid in all 50 states will cover medically-necessary treatment for people with autism.
Anonymous	For a moment, let's touch on cost-effective service delivery. I am reading this to mean that others are finding the special needs services and therapies to be more than they can afford. But, the government and school system offer occupational therapy, and social skills, and speech, etc! No worries! Except that the school system only offers therapy as needed for things that interfere with a child's educational ability. When my son lost his IEP, it was because he has a very high intellect and they didn't feel that his education was suffering. I was recommended to go to a private institution to get him the therapy he needed. I had evaluations at several, and my quotes were all roughly 500$ a week, minimum. Neither I, nor the average Joe, could afford those private services. My recommendation is that the government think carefully about making these services required through insurances or as a service to ANY person with a diagnosis. Because right now? We are without services and he struggles.
Dean	It ALL comes down to money. It makes me sick! We NEED fully...socialized...medicine in this country. Right now, if you got money, you can pay for therapy, classes, etc. The [Profanity Redacted] for-profit insurance companies won't pay [Profanity Redacted] for mental health treatment!!
Patricia Harkins, Harkins and Associates	This is an overwhelming topic. My son was diagnosed 20 years ago, and between insurance, Medicaid (in Pennsylvania kids with disabilities got Medicaid right away) and our own resources, He had intense therapy and intervention at home and privately, but the public school system was clueless. 20 years later, in Texas, few people have ABA covered, no one can get Medicaid, and the schools are still frequently clueless. The expense to get appropriately intense interventions is prohibitive for most people.
Monica Rojo	Unfortunately treatment is not easily accessible due to lack of insurance coverage, high insurance co-pay, or scheduling problems. For instance, my insurance covers treatment but we have to pay $40 per 30 min sessions (physical therapy) at least 2 times a week (this amount would triple if we added all servises needed speech and OT). I can cover this cost of al least one intervention if both, my husband and I work, but then we do not find any providers because they work Mon-Fri 8-5. If we get time off to get treatment then we lose income and paying for treatment becomes a burden.
Laurie , Grandmother	My grandson was recently diagnosed with autism at age 3-1/2 and requires daily intense therapy at a cost of $50K+/year which began in January 2016. [Minor/Dependent Name Redacted]'s parents both work full time struggling to make ends meet, and are now in the frightening "wait and see if insurance will cover this" mode. We learned yesterday 4/26/16- after much verifying that his autism therapy would be covered that it is/was in fact being denied. [Minor/Dependent Name Redacted] has "grown" so much in the three months he had been going to Homestead and was in therapy as well as we have as a family to help him along the way and understand the hurdles and struggles those with autism face. In three months, we have learned more than you can imagine about autism, and have seen the tremendous improvement therapy has made for my Grandson. [Minor/Dependent Name Redacted] along with others with autism are in need of these therapy's to be able to help them be successful as individuals and in life. We also realize the importance of this therapy for all autistic children, regardless of whether they have employer based insurance OR need to rely on Medicaid. I can only hope and pray for the very best for my grandson, and hope you can support this and any other insurance reform bills that provide help to autistic children and their families regardless of their income or status. Please help not only my grandson but our future as a whole.
Amanda, friend of a parent with an autistic child	Working parents should be able to deduct childcare expenses from their gross income and have the remaining amount qualify for Medicaid. From what I understand, the Michigan Medicaid qualification amount of $26,812 is gross income, not gross income less childcare expenses, which can be substantial due to the one-on-one or low care provider to child ratio needed by many autistic children. Please consider allowing parents or the head of household to adjust their gross income down by the amount of care expenses, then use that amount for Medicaid qualification. This will allow them to be working, productive members of society. Thank you.
Anonymous	ABA therapy is extremely hard to acquire, even with health insurance. Providers care about cost, not necessarily children.
Multiple Respondents	Infrastructure gaps include Parents' right to earn a living. According to DHS guidelines, a family of 3 cannot make more than $26,812 gross income in the State of Michigan to receive Medicaid. Medicaid is the only healthcare insurance that provides for Mental Health Services, CLS, OT, and Speech. In order to receive services, a parent must be in poverty. A single working parent must have childcare to go to work even past the age of 12. The out of pocket cost to hire a qualified individual and to receive therapy exceeds the budget limits for the household. Many daycare centers reject special needs children because they need one on one care that can't be provided at their facilities. Expenses are not countable in calculations to receive Medicaid and care, only income is countable. When a working parent has a good job and is willing to provide and has to pay taxes, they should not be penalized. A salary of $50,000 does not cover the out of pocket expenses after taxes. The government limits the parent's ability to provide a better life for a child with Autism. There should not be an income limit for Medicaid. The child is disabled and requires services regardless of income. As a taxpayer the parent is contributing to the government services but cannot get those services. The government has abandoned our needs yet still demands tax dollars. Needs of the disabled should be met. Disabled should not equal poverty. Prosperity should be for all.
Anonymous	Services for those with ASD are severely lacking within the United States. There is no federal mandate that those with an ASD diagnosis receive treatment from their insurance and it is left up to each individual state to decide what, if any, services are covered. This has left too many of those in need of service having to go without because they cannot afford the cost alone. Ironically, the cost of behavioral services is astronomically less than the cost of life-long institutionalization for individuals on the spectrum. Without a nation wide mandate for insurance coverage and amount of treatment covered, families and care takers are faced with the daunting task of researching and finding the laws that detail the coverage mandated, if any, for their charges. Also, many states only cover the minimum amount of behavioral therapy shown to be effective for those with ASD. This does a great disservice to individuals who may be more affected by ASD and who could stand to benefit from receiving more treatment. Without a nationwide mandate for maximum treatment covered, many individuals and families are under-served and will continue to feel the impact of this lack of service for years and years to come.
Anonymous	My official evaluation cost $3000 and insurance didn't cover any of it. This is not affordable for low income families!
Nadia Portilia	Concerns with those without private insurance/those with Medicaid access the same services. How can those without private insurance/those with Medicaid receive access to the same treatment.
Amber L Perry, ASAN	First step is to establish medical insurance, as services are costly. Make sure they cover meds as well. You can see a Psychologist. Here we have DD Brokerage Services, where afflicted adults can hire providers to work with them at home and in the community to be more independent. Independent living organizations help adults as well. You can also seek out a local art or music program, as autistic individuals love those activities. The Autism Society of America, ASAN are also good help. ASO is best for parents. Stay away from Autism Speaks, as they focus less on us and our condition and more on funding.
Anonymous	I'd like to not be such a financial burden to my family. Access to legitimate work-at-home jobs would help immensely, especially for those who don't qualify for or would like to avoid going on disability. Clear information about how to balance getting an income and getting or keeping health insurance (especially for those on medicaid) would help too. There's a lot of anxiety in not having income, and also in the prospect of losing current health insurance if/when I could find a job, since I'm not sure I could get a job that would include full benefits.
Margaret Woch	Private insurance needs to be responsible (more) fully for the needs of the people with ASD who subscribe to their plans. The current situation is pittiful.
Dr. C. E. Platt, Autistic	Top funding priority should be knowledge base and intervention efficacy and development. Disease model is not correct starting point. Health model is correct starting point. TORTURE AND ABUSE should be outlawed, especially shock therapy and chemical abuse. Top funding priority should be knowledge base and intervention efficacy and development.
Eileen Nicole Simon, conradsimon.org	[1] LONG-TERM CARE INSURANCE: I looked at my responses to this question in 2008, 2009, and 2010. In 2008 I suggested that long-term care insurance should be mandatory for every child born. In 2009 I pointed out that actuarial scientists might be more aggressive at seeking environmental causes of the increased prevalence of autism. They might bring a new perspective on what kind of research could more quickly lead to prevention. [2] PRIVATE PARTNERSHIPS: In 2009 I also noted that housing and food are basic human needs, and that our capitalistic democratic society is clearly failing to ensure these needs are met for everyone. At that time big banks were being bailed out as too important to be allowed to fail. I proposed an alternative use for bail-out money, which looking at again I still agree with: Give the money to Marriott Hotels to build enough Residence Inn Hotels to ensure housing for everyone. I am sure entrepreneurs at Marriott would know how to take the money, build the hotels, and eventually make a profit by encouraging those they housed to work toward shared ownership of their homes -- providing jobs as housekeepers, cooks, maintenance, grounds keepers, etc.
Melissa Diamond, A Global Voice for Autism	Emphasis on evidence-based practices and funding for ABA-based interventions for families/cost-effective evidence-based options so that families are not wasting money on seemingly more affordable interventions that have no evidence of efficacy. Culturally appropriate intervention services that are affordable to all families.
Denise M. Rozell, Easterseals	Easterseals is the largest provider of direct services to individuals with autism across the lifespan. One of the biggest issues in service provision is the lack of consistent reimbursement and funding. Increased funding for coverage is imperative so that services are not limited to children whose parents earn enough to pay out of pocket. It would be very helpful if IACC could look at longitudinal research on the financial benefits to society when people with autism receive appropriate services. If it is successfully demonstrated that a child would likely be able to live in a less restrictive setting for the balance of her life as a direct result of services, thus saving millions of dollars, then public or private revenue sources could be created to pay for the service. Individuals with autism and their families deserve readily-accessible, high-quality, evidence-based, person-centered information and resources that empower them for self-determined living. Easterseals encourages the IACC to prioritize research that will build the scientific evidence for some of the new models of intervention that have been noted to be promising practices or have the beginnings of supportive evidence. Easterseals also urges the IACC to research how successful programs that typically reside within university settings can be scaled to meet the needs of the thousands of individuals who could benefit from the protocols in the real world so families can access the services we know work.
Kristy Anderson, AJ Drexel Autism Institute	Research is needed to understand the role that federal safety net programs play in promoting financial stability and independence across the life course. Nearly 1 out of every 3 Americans with a disability lives in poverty. Like many people with disabilities, adults on the autism spectrum face several economic challenges such as low labor market participation, poor wages and high medical costs. Much of the research about adult services have focused on programs that promote employment for people with disabilities, such as Vocational Rehabilitation and Special Education programs. However, research about public safety net programs - like Supplemental Security Income (SSI), food stamps and public housing ' is severely lacking. This is a critical gap in the research considering that these programs are a vital lifeline for thousands of people who could not otherwise afford basic necessities like food and rent. In 2010, over 151,000 people with autism received SSI. To put this number in context ' in that same year, special education services covered 420,000 children and adolescents on the autism spectrum and Vocational Rehabilitation closed 9,020 cases. Despite its importance, we have virtually no understanding of how SSI impacts the daily lives of its beneficiaries with autism. Understanding how federal safety net programs ' and SSI in particular - impacts the lives of people with autism should be a top priority in future research.
Anonymous	Costs for services are outrageous. Many people I know don't qualify for help regarding therapies and such because they hold a job that "makes too much money." I think more needs to be looked at. A single mom working full time that has two special needs kids may on paper make 100k but when it gets boiled down between the doctors visits, medication, testing etc, there is not much left for therapy but none of that is taking into consideration and that is troublesome.
Jane O'Grady	There are not enough services able to financially assist families with costs of care. The IRS should not audit you and treat you like a criminal if you need child care for a disabled child or young adult.
Laura Walls	Screening in early childhood needs to be AFFORDABLE.
Anonymous	Funding should be given to neurologists to try to make brain scans more easily available and less expensive, because diagnostic methods based on observation and self-reporting are less reliable.
Rita Pospisil, West Platte RII	As a special education teacher and an aunt to a person with autism, it is very important to continue the diagnosis and screening as soon as suspected, preferably prior to the age of three. Then funding must be made for the treatment and early training for these individuals. It is important to attend to the diagnosis and treatment early and free if needed to often prevent the need for special services past the elementary age.
Tita	and the coverage from the insurance
Anonymous, parent	My insurance will not cover genetic screening which is unfortunate even though doctor recommended. It would help siblings and benefits.
Leslie, Maryk	Insurance companies are hindering progress by refusing or limiting payment.
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	Support insurance coverage for genetic testing
Melissa Diamond, A Global Voice for Autism	Culturally appropriate intervention services that are affordable to all families.
Amie Nicole	Insurance needs to cover these specialty doctors and alternative practitioners. Insurance companies need to be held responsible for actually covering the therapeutic services these children require without constantly denying claims to see if the parent will finally break down and stop the battle.
Bruce Hall, Bruce Hall Photography	at the top of our list would be technology based intervention for communication, medical, pharmacological and behavioral supports are all critical and in short supply everywhere, except for those with the resources to pay for these service. And don't forget dental services. Medicaid, and in CA, Medical options are few and the quality is usually very poor.
Anonymous	Getting financial help with important items that are helping individuals improve their symptoms would help significantly.
Julie Cadman, Healing Complex Kids	There are many different treatments that can be used for autism - I strongly recommend that families be allowed to be reimbursed for supplements their children need.
Idil Abdull	We now have Medicaid covering autism therapy - thanks to the last IACC committee members. We now need a national insurance coverage as well.
Elena Kelley, Mother	Priorities....money. The pentagon gets plenty to kill and maim, but taking care of our most vulnerable, including education of the neurotypicals, is not a priority. With enough funding there are plenty of people who would love to help, do research, etc.....
Anna Frances, autistic 17 year old	Government funding for a basic income guarantee (enough to live simply and sustainably, with the option to work if you are able), free healthcare that includes alternative treatments and functional medicine, and programs that support people in their personal, academic and work lives.
Brenda Messex, Parent & Personal Service Worker	The biggest gap is the lack of affordable legal assistance for getting Guardianship of a special needs individual or setting up a Third Party Trust. Most parents of special needs individuals can barely make ends meet from month to month and cannot afford the thousands of dollars in legal fees these issues require
Charlene Williams	More financial funding for card assistance.
matt, parent of ASD child	Not enough given here. Too many times we are jumping through hoops to get current diagnoses to get coverage on insurance to get therapy to get endorsements for disability compensation. 3 years running, and not one penny of assistance
Beth Thompson, Milestones Autism Resources	Lack of services for adults with Autism, particularly adults that are deemed "high functioning" or need different supports than have been traditionally offered to older DD populations. Lack of funding for needed services, one must be in "extreme emergency" to offer get funding and by then, much of what could have been done to prevent the crisis can not be repaired.
Ashley	We need all insurance companies to include Autism therapies as a part of the basic insurance. One income families, like mine, can't pay for therapies our children with Autism need out of pocket, and our insurance offers no coverage.(We live in Mississippi.) When families have no way of providing said services and therapies to our children due to lack of coverage and inability to pay the full cost, our children become adults with Autism who have a much smaller chance of navigating a neurotypical world. Most families need the insurance companies help in gaining access to these therapies and services to give our children with Autism the help they need to thrive.
Charlene Williams	More financial assistance with diagnosis. I was put on a waiting list by the school district so I had to pay a private psychologist for a diagnosis to get services.
Diane Frillman	Early biochemical testing a must. Please make it a part of the (free paid) Medicaid plan so parents can have the tests done without a financial burden. Currently, the Medicaid department and Federal government will NOT pay for these very important tests BECAUSE the results vary!!
Jessica Green	Requiring insurance to cover some it not all costs for a formal diagnosis from the appropriate developmental physicians.
Dhinesh Krishnaraj, TACA (Talk About Curing Autism)	First of all the insurance companies playing the game, they never accepted to cover any of speech, OT or ABA therapies, I was not able to pay for them, so I had to send my family to india to do affordable care, did any of you care about what the insurance companies do? Make sure all insurers in USA covers the treatments and therapies for kids with ASD, that should be first priority, families are spending millions of dollars because the insurers don't want to cover
Anonymous	It is unfortunate that insurance will not cover many therapies that may benefit children with autism.
Jessica Green	Coverage for therapy, especially ABA therapy
Anonymous	our kids need to get ABA covered by insurance where there are not so many loopholes where the insurance companies can get out of paying for ABA.
Rachel , Waterson	Children with autism should be covered by Medicare the same as children born with birth defects are. So all children get more of the therapy they need asap so they may grow to not need as many services when they age.
Jen Meyers	All health insurance policies, in every state, should be required to cover autism therapies like ABA. My son saw great benefit from ABA therapy until I changed jobs and insurances and it was no longer covered. We continued it as long as we could, but I'm still paying off what we owed the therapist when we stopped, to the tune of $400/month. That's almost a year after we stopped therapy. I hated to have to stop it, but we simply couldn't afford it. It should be mandatory to cover these therapies.
Veronica	There are long waiting lists for Medicaid Waivers, and even if you have a waiver does not mean you have ready access to respite or community living supports, especially in more rural areas.

Disparities in access to services should be addressed

Respondent	Response
Anonymous	All of those priorities are extremely important and intertwined to develop a comprehensive approach to serving those with ASD. Unfortunately, depending on where you live, their is a huge gap in the quality of those services and priorities especially in low income areas.
Michael Sweeney	We are doing well as a family. However, we need a better state by state collection process. Each state is very different. I am not sure that Washington should do this. As a NY State resident, we care about the other high tax states like CA and MA.
Robin K. Blitz, MD, Phoenix Children's Hospital	The lack of intervention services in rural areas, outside of metropolitan regions, and especially to Native American communities.
Beth Rutt, parent	Services in rural America for mental health are very remote. Telemedicine is not the solution for all! Employment is not available for those who could be working. Parents do not have any place to turn. They are constantly worried about what will happen to their child when they are adults and they the parent is no longer able to help them. What then? This is what impacts the families every where. The lack of services for adults.
Cheryl Peeples	In some states, like my state of MS, there are very little services. Most people must travel out of state. There needs to be services in every state. There needs to be a huge effort into services and housing for the children aging out of the school systems. This needs to be done immediately. These parents have no help one this happens.
Heidi Stewart	availability of services in areas of US are not equal- families may have to move to get the best treatment which cold mean uprooting children, family, and community
Julie Tracy, Julie+Michael Tracy Family Foundation/Urban Autism Solutions	We are deeply concerned about access to service for low income and minority youth living in the urban areas we serve in Chicago. The barriers to access any information and service offered through the Department of Human Services and Developmental Disabilities in Illinois are staggering. We see hundreds of employable and ready-to-engage youth graduate from transition programs in the Chicago Public Schools and begin the phase of life best described by Dr. Paul Shattuck as "floundering." They are disengaged and unable to make it over the considerable hurdles that the state's Voc rehab department throws in their way. It takes time, money, and considerable savvy to clear these obstacles and most families simply cannot manage this. We need robust wrap-around case management abilities to provide for the psychiatric instability and disconnection that impacts so many young people and their families at this juncture.
Tamara Ratley, Principal at CEC-North	That is a shot in the dark now isnt it? Every region- every school- DD services are different everywhere-every medical facility..... who knows.
Rachael, Educator/Parent	Services are limited for those who do not have excellent insurance or a school system with individuals trained in autism. If society is hoping not to provide financial support to ASD adults there entire life then affordable services throughout childhood and the adulthood are necessary.
Kristen and Brian Festa	Please address making educational services equitable for all children regardless of the wealth of their school district. Please work to secure services for adults who age out of the system.
Leslie, Maryk	Each state has different resources; if you are in a rural area, you are pretty much screwed unless you have the ability to travel for services/therapies.
Anonymous	Services vary by state and even within states. For example the 1915C Home and Community based waiver is primarily funded by Medicaid dollars. If you have approval in one state and wish to move to another state with the same waiver your dollars are not portable and the service delivery is interrupted. Often families move when they retire and we are not able to transfer these services to another state. That person then loses their natural supports. In addition, Self direction was create to give people choice. The role of the fiscal Intermediary, MSC and Broker should be independent. The role of the Broker and the FI should be separate and independent from the individual that is seeking services. Lastly, program rates vary by agency and the individuals they serve and when those services take place. you can have two programs providing the same type of service one at $40 per hour and one at $26 per hour. The program that provides services at $26 per hour can only provid limited support, so a high need individual can go on a very limited basis. The program that receives $40 per hour provides more regular programming, however, the program cannot support the person that requires 1:1. There is also a subset of the population that cannot be 1:1 in the community they need to be 2:1, the system does not support this need. So either way the high need individual is left without choice and community
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	Health disparities need to be addressed , deserve targeted attention, and result in poorer outcomes. Why is this objective 'far below?' We note 'only about 20 percent of children with ASD are being identified early.' There needs to be increased use of screening, and raising awareness of early diagnosis/intervention. Although 'Some progress has been made in' diverse communities'' this is an area to address for early diagnosis/intervention.
Anonymous, Autism Society of America	These comments are being submitted on behalf of the Autism Society of America. Unfortunately, we know in 2016 there are still health disparities and profound differences in availability of services and access of diagnosis, and screening in underserved and ethnic minority populations. Overall, we must better understand what the barriers are to reaching these communities and preventing them from getting the adequate help and diagnostic evaluation and help caregivers navigate the pathway from screening to diagnosis to entry into early intervention. Until this gap is closed, we will not see the impact and outcomes for all individuals living with ASD. We must assure that diagnosis and screening tools are available to parents and children of all socio-economic backgrounds and levels. It is critical that we understand the reasons to these barriers such as services being systematically withheld from diverse groups. Because we know early intervention services leads to early identification which leads to an early evaluation and access to services and supports.
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	Insure that treatments and interventions meet the needs of diverse populations and that services offered/studied include using languages other than English.
April Banerjee, People With Disabilities Foundation	PWDF recommends that the 2016 Strategic Plan include a greater focus on issues related to disparities in research and services, particularly that of adults with autism and disparities based on gender, ethnicity and income levels.
Leslie Hollis	This is the number 1 priority. Increasing access to services for ALL children regardless of income or geographic location
Anonymous	Middle class families are at a disadvantage in this regard. Poor families get assigned a case worker (although with the overload in social services, this may not help them much.) Rich families can afford to access more information and therapies. Middle class families are just on their own, and may be lucky enough to find a good support organization that can point them in the right direction for help.

Access to early intervention services is a priority

Respondent	Response
Anonymous	Early intervention services should be accessible, affordable and timely. Employment opportunities and training are essential for autistic adults.
AM	Cost effective service delivery specifically intensive early intervention and ABA therapy that can lead to less need for services in the future.
Anonymous	I feel that the biggest priorities in this area are the availability and accessibility of early intervention services, and services for adults with autism. Research is already showing that early intervention is highly effective for children with autism, and these services needs to be readily available and affordable for families who have received a new diagnosis. In addition, services for adults who are no longer eligible for support through the public school system should be easily accessible to families.
Kristen Goodman, Board Certified Behavior Analyst	Early intervention needs to happen before the diagnosis. Preemptive mommy and me early intervention classes can educate parents on what to look for as well as how to teach to the mile stones that they are slow to meet.
Balvinder Ghag	Early tests for children with suspected ASD and early support for parents
Sarah, Heritage Christian Services	preschool OT specialist and autism specialists need to be available for consult with the parents.

Improve the quality and availability of services within the educational systems

Respondent	Response
Carolyn Hyman	We've used the schools primarily as a delivery service and that fails when you have a weak school system, or administrators who do not see special education as a priority. Those children are in even more desperate need of services and don't get them. I also think that we have to include much more vocational training, even for high functioning kids.
Robert Vincelette	education
Heather Hebert del Cuadro, Brain Education Association Instructor	Power Brain Education National Director is David Beal. His contact number is [Phone Number Redacted]. The Website: www.powerbraineducation.com. District Budget resources are negatively impacting the ability to adequately assess student needs, services, and staff training ( Teacher and Instructional Aides) to adequately assist students.
Leslie Pirelli	Education! Families depend on the schools. Schools look at cost and pack the special education classes. Training is not adequate and only skims the top. What is great today in education may be dropped like a hot potato tomorrow. There needs to be extensive training with accountability for the schools to lower student teacher ratio and continue with the training for many years such as 5-10 not a one day inservice.
Kathleen Quill, Autism Institute	1. address the gap between knowledge of evidence-based educational practices and application in inclusionary school settings
Anonymous	education
Anonymous	Services for twice exceptional students are lacking. My son's IEP team insisted they were only able to address his Special Needs, not his Cognitive Gifts/Superior IQ. The school district he attended had 2 tracks - one for kids with IEPs and another for gifted. Since he was identified as both and couldn't be in two places at once, this was an on-going problem.
Debra Balke, Child Neurology of SLO/Central Coast Autism Spectrum Center	Educational systems - they currently are quite poor in the public school system.
Millicent Leow, Mom	Parents should not have to force schools to do what is written in the I.E.P. We should not have to file a citizen's complaint every time the school fails to do what's written and what isn't always written in an I.E.P. Better standards for schools to maintain in helping families of special needs children.
Elissa, Parent	What are schools supposed to do with students like this that need more space and less chaos than in a typical school? Current type of schools are not suited to a Free and Appropriate Public Education, as not enough refinement can be made. Given current educational pressures, what is being done and what could and should be done to protect asd students' rights under the ADA? What models are out there in public school systems or should be brought in?
Gillian Pilcher, Parent of 2 with high functioning Aut	Education. Our children are discriminated against in the public school system. School was our biggest hurdle due to schools refusing to test, refusing to give accommodations, bullying, and the major discrimination. My son's civil rights were ignored.
	1) School districts need more funding for autism services, particularly for moderate to high functioning children who are not receiving adequate support. They appear too high for certain services, but are not necessarily able to function independently. Problems include bullying, departure from public schools, tremendous financial burden on families supplementing services through private agencies, mental health problems which result in outpatient and in-patient treatment, and even incarceration (stress from inadequate support + lack of social awareness = doing or saying things that result in arrest and adjudication). 2) We need community supports for adolescents and young adults with autism who are not yet ready to be alone/independent or maintain employment - such as after school programs and job training tailored to persons with moderate-high functioning autism.
	This "inclusion" stuff is [Profanity Redacted]. What's the point of putting a non-verbal kid - with no way to communicate - in a room full of people. That's not inclusion and benefits no one. More focus and more money needs to be spent on education for the kids that truly need the services. One-on-one - figuring out how to communicate with them. And, please stop over diagnosing kids - you're watering down the services for the truly needy cases. Education opportunities for these kids is a mess. Schools are over-diagnosing for the extra money - meanwhile the severe kids are getting their services watered down. It's disgusting how many parents fight to have their kid classified for special services. I have a non-verbal, low functioning autistic granddaughter. She has spent the last 4 years in a classroom with 3 other boys with behavioral issues. The boys are fully verbal and fully cognizant but they get the same services as my granddaughter. Private school is too expensive so she is lumped in a class with a cookie cutter curriculum. Fix the education services for the special education kids based on severity of each child. Not this cooker cutter nonsense.
	Education!!
Cheryl	Stop allowing the school districts to p\spend money on attorneys that needs to go toward helping students and the training of teachers. I have a son that was diagnosed at age three but the school refused to do anything. The hardest thing for him is the social aspects that he has a hard time with. He is 7 know and has been suspended for eloping from school. The school. Require that the school districts use the dollars they receive for special services on the children and not on attorneys. I have fought them and won this year for one of my kids. The district had to pay and they had to pay for my attorney, too. This money would be better spent on the children and the teacher's training. The dollars spent on attorneys for each school district needs to be transparent and possibly listed in the local newspapers so they don't just help the kids that have parents that have the money to spend on an attorney.
	When a child is diagnosed with autism, the public school system should accept the medical diagnosis and provide services to meet the child's specific needs. Now, public schools have their own identification and usually avoid identifying autism and therefore deny the students their unique educational needs.
Julie, Tuberous Sclerosis Alliance	Education ...desperately need to give proven research for supports to educators with a better means of tracking their implementation including teacher observations and regular certification renewal. Deficiencies and poor supports, inappropriate supports in school is in a state of crisis. Monitoring, reporting is insufficient and therefore unreliable.
Sarah Hurwitz, Indiana University	school and educational opportunities social groups and play with peers
Christine DeHaven	Education, more services need to be given to schools to supply student to be fully included.
Anonymous	Move oversight of educational services, especially for post-secondary transition planning, from the US Department of Education to US HHS. USED has abdicated its role and funding specific to ASD and transition is being wasted to support the apparatus of conferences and education agency bureaucracies with no compliance monitoring.
Tammy	More focus has to happen on education and employment. There is simply not enough help for people on the spectrum to live independently or to live in autism friendly communities. Autistic children become autistic adults and there simply are not enough resources out there. More focusnon women and girls on the spectrum is needed. For everything from diagnosis to education to inclusion in studies.
Jennifer Burke, parent	additional resources provided to public schools to ensure that students, especially lower income and minority students, are getting adequate services additional resources provided to adult centers and agencies to improve service provision to adults with autism
Ellen Riehm, Parent	Behavioral health response other than juvenile justice. Schools need to stop using our court system as a students behavior plan. You can't punish the Autism out of someone!
Anonymous	Education Safety
Anonymous	For myself and for others, I've seen that school districts here in the Chicago area do a good job of giving families useful information. Many suburban districts have or try to have parent support groups at the young age levels. The Chicago area benefits greatly from special recreation associations, which are multi-town park districts, and run day programs, outings, music and art lessons, and Special Olympics programs. They are funded by the area park districts, fundraising, and user fees. The SRA's are the best source of leisure activities and friendship opportunities for children, teens, and adults with developmental disabilities. And by participating in child-and-parent activities there, or just watching the sports, parents network and gain awareness of other community opportunities and ideas.
Anonymous	Information should be given as soon as possible. Schools do not have the money for great programs and they will only be able to give what they have as opposed to what the child needs. First, there needs to be a complete revamping of public education. I believe in the least restricted environment when it is appropriate BUT children with behavior/learning disabilities need a different approach to their education. Programs need to be developed so that every child can be a happy, healthy, and contributing member to society. Inclusion does not work for every child.
Dr. C. Rick Ellis, Spectrum Psychological and Forensic Services	Schools across the country deny services to ASD kids every day. This issues should be addressed.
Anonymous	Edication
Marcia Gray	Mixed programs that have spectrum kids mixed with neurotypical kids only work if the kids are actually interacting with each other. Some of these programs are not providing the support and instruction to the neurotypical kids that would allow them to actually form relationships and promote inclusion of the spectrum students - leading to an odd "separate but not really equal" class experience at best and outright bullying (in the form of exclusion and teasing) at worst.
Adrienne, Mother	Also, appropriate models for education and communication.
Anonymous	I think this starts in early education. Educators and school systems have an awareness of autism but they are not informed, prepared or educated enough themselves to even request the resources necessary to support a student with autism in the least restrictive and most appropriate environment. This needs to be provided for both Special education and Regular education teachers. The IEP's look identical to each other and often don't include technological advancements for speech/communication. Teachers are not prepared or supported to implement use of simple technology (apple products) to provide a crossover support from home to school. At least iphone and ipad tech is somewhat familiar to most everyone, provide training in educational setting to use various apps to support communication, integration, independence in sequence tasks, changing ritualistic behaviors, identifying them before they become a necessary step. etc.
Tatia Kortepeter and Vicki Mabanta, A Work in Progress, LLC	It should probably start in middle school.
Anonymous	education
Anonymous	Education- having enough training in understanding ASD. My son's case manager was clueless. District ASD director never came to IEP MEETINGS. No one understood my son, wanted to take away services because of good grades yet ignored social struggles and bullying. Family well being- our family suffered because of how the publics books treated both our ASD kids, especially ignoring bullying!!
Joseph Schunk, Parent	Education
Jennifer Wade	Education. Schools aren't sure what to do with kids who fall between high functioning regular ed and severely impacted self-contained children. Many kids fall in the middle, where they are high functioning enough to be mainstreamed but not functioning high enough to adapt without substantial supports.
Cheryl Miller, Parent and teacher	We want our behavior aide that we pay for to be in the school since this is where the most socialization is taking place and the place the children spend most of their time. The school district is refusing and the kids are falling behind, not because they are not capable of the learning but because their behaviors are getting in the way and the school aide are not trained in behaviors and cannot help.
Kristie Patten Koenig, New York University	also disparities in service. Has to rely on excellent public school models as a "free service". Comprehensive public school models must be studies as a way to reduce disparity in service provision. ASD Nest in NYC DOE is one model that I am PI of that needs to be studied and replicated and models that serve students requiring increased supports.
Trish, special ed nurse and parent	It took over 10 years for the dept of ed to catch up and it fell to us parents to teach and explain our kids, which was 10 years too late for my son, who could have been included in regular ed classes instead of being warehoused in the "special day class" ghetto.
Erin Fallon, Teacher and Parent	There is a major gap between the services provided by early intervention and the public school system. The programs do not address the needs of the children. Some counties only provide a three hour program for the pre school disabled. The delay in services would be greatly reduced if the doctors had a separate visit that only addressed developmental delays . Having a knowledgable staff member conduct developmental screenings and consultations may encourage parents to seek early intervention services.
Pat C	Public policy on special education for children on the spectrum is also in need of an overhaul. Eliminating the Rowley "basic floor of opportunity" standard should be a first step and holding schools accountable for actual educational improvement in core academic and daily living areas should become the new standard.
Joseph Schunk, Parent	education - meaningful education.

Improve the efficacy and cost effectiveness of services and service delivery

in

Respondent	Response
Anonymous	Resources (ABA) are being used widely (via insurance), but they have NOT been shown to be effective in treating the disorder. In fact, the treatment is so wide spread (treating very high functioning/normal children) and costly, that it will impact the funding for better medical treatments of autism. There is a finite amount of money.
Christy Chapman	Efficacious and cost-effective service delivery are crucial. Along with being a professional who works with individuals with Autism, I have a 13-year-old child with Autism. All of his interventions have occurred through the school system, as I could not afford outside therapy and services when he was young (the most important developmental years). We are denying services to kids with Autism and punish them for having insurance. Honestly I would have been better off if I had quit my job and gotten my son on Medicaid in those early years, sadly. Our current system supports this.
Charles Cowan, Seattle Children's Hospital Autism Center	Outcome research on community delivery of ABA services. Who benefits, who does not, how to measure and standardize behavioral interventions.
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	Public Health responsibility in defining what it has to be done. Practice Guidelines produced by the NIMH
Anonymous	Services need to be prioritized based on the scientific research. Once prioritized they need to be distributed to ALL individuals effected by autism so that they can be included in the community with as much assistance as needed. These services need to be FREE for all individuals with autism. There should not be any laws that enable insurance companies to not pay for all services. ALL services should be covered NO MATTER what with no cap for benefits.
Anonymous	fidelity/efficacy of interventions/services within the school system
Nathan Call, Marcus Autism Center/Emory University	Caregiver decision making regarding use of empirically supported/unsupported treatments and implementation of caregiver mediated treatments with fidelity
Rose Calloway, GaLEND trainee	Collective impact of the servicing agencies to increase postive outcomes.
Anonymous	I'm very concerned about private providers that claim success without the results to back it up. As a public school provider we do not have a financial incentive to make children appear successful. We are more inclined to present true outcomes. Many private providers are giving families misinformation and inflated data. This make the public providers appear ineffective. There needs to be a checks and balance especially for folks receiving scholarship dollars.
Anonymous	High quality, cost effective service delivery is key since autism affects the person throughout his/her life.
Lindsey Ramus, 1969	Cost effective services for the families is important. I have seen the gap getting smaller over time..
LorRainne Jones, Kid Pro Therapy Services Inc	Cost effective service delivery models. In the late 1980s, I was a visiting assistant professor at the University of South Florida and involved in research on the TALK (Training for Acquisition of Language In Kids) Program. The TALK Program was an ABA based program developed by Philip Drash, Ph.D., BCBA that focused on rapid acquisition of speech, language and cognitive skills in young children with autism and other developmental disabilities. Children were seen 1-3 hours per week with parent follow up at home. They were showing outcomes comparable to traditional 20-40 hours per week ABA programs at a faction of the cost, $3,000-$6,000 per year vs. $30,000 to $60,000 per year. We need to really focus on programs like this one. They are cost effective and train and empower parents. the result is more intervention not less.
Noel Arring, DNP, RN, OCN	There is a giant gap in the literature about efficacious and cost-effective service delivery, which is a must for those of us working with insurance companies trying to get therapies paid for. At this time, because we have a self-funded plan, we have minimal to no coverage for any intervention that is behavioral or meant to address social emotional needs in a group setting. AS my child gets older community inclusion has also been identified as an area of great need.
Marisa Lawrence	cost effective service delivery and how insurance companies are having too much say and preventing children from getting proper treatment
Anonymous	efficacious and cost effective service delivery
Mary Pulles Cavanaugh, Thinking Moms Revolution	Its been my experience that recovery is not a priority with our government for man-made brain injured children at the present time. They are being dumbed down and made less. My experience with Card for my very violent pre-teen at the time was to take the glass out of my picture frames. Each man made brain injured individual should be given a life coach to empower them to their greatness.
Wil Beaudoin	More research needs to be focused on assessing and improving services for autistic people. We need more of a balance between a study of the causes of autism and improving the lives of those autistic people who are alive.
Sandra Rogers	It would be helpful to rethink the current fee for service model, as this is not a viable model for providers. A provider is expected to hire and have staff available for individuals they serve, yet if that person served doesn't utilize that service as much as they are authorized then the provider is still paying for the staff but not being reimbursed for the service. Furthermore, the organization is not even allowed to follow up or discharge a client based on utilization.
Theresa Mason	When pertaining to older spectrum people, wanting ASD people to be involved with "community based" jobs without the proper guidance or support, is a major concern and there are areas that lack any support services available at all. Along those lines, the cost associated with services continuing and waivers, etc.. are all either lacking or confusing. Each city, county & state have different availability and with all the different aspects, more and more people get lost in the shuffle instead of helped.
Parvathi Gontina	cost effective service delivery
Patrick Johnson, American Academy of Pediatrics	The American Academy of Pediatrics agrees that the promotion of early screening is of vital importance. As the IACC Strategic Plan states, 'in infants at high genetic risk for ASD ['] symptoms of autism begin to emerge as young as 6 months of age in those who later develop ASD.' Providers should start screening early (4 months of age) by looking for atypical social development and stereotypic movements, with formal screening tests beginning at 6 months of age. However, parents should not expect that all children with ASD will be properly identified by 6 months of age, as the trial groups have so far only focused on high-risk infants (with siblings who have ASD). The Plan states that only 20 percent of children are identified with ASD by 3 years of age, a crucial concern given how beneficial early identification and intervention can be to children with ASD. AAP agrees that repeated screenings at the ages of 6, 12, and 18 months will help to raise the number of children identified early. Parent concerns should also be addressed at each well child visit throughout the first few years of life. Earlier screening/diagnosis provides for greater opportunity for early intervention, improved transition to special education, and other support services. However, specific screening should occur between 15-18 months of age, and again at 24 months or sooner as parental concerns arise.
Kayla Weant, Prosper Independent School District	I think more research needs to be done on the cost/benefit of the inclusion model in education with students with ASD.

Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)

Respondent	Response
Cindy, parent	ALL OF THOSE LISTED ABOVE SHOULD BE PRIORITIES AND ACTUAL PLANS TO PUT IN PLACE. LESS TALK AND MORE ACTION!!!
Julie, Mother of 4 year old newly-diagnosed with autism	I have found ALL of these areas to be lacking, and disappointingly so. Upon diagnosis of a child with autism, almost all service providers (educational, therapeutic, medical, etc) have a 3-4 month lag time before beginning to provide intervention services. When parents are told that early intervention is key and then face a roadblock that is a huge timeframe for a small child, it's very discouraging. The need for more efficient and cost-efficient service delivery is imperative. In addition, the incredible impediments posed by insurance companies in covering these interventions - those that could pose a difference between a fruitful, productive life and one of reliance upon the public system - are simply shameful.
Kimberly Richards, Parent caregiver	All of three issues listed are severely lacking in Florida abduction need to be addressed.
Cindy Axt	All. It all needs to be addressed. We have kids graduating high school unable to leave home, unable to emotionally manage on their own, in rural places where they have no access to services, or in cities yet unable to afford services. We have to dig and make millions of calls just to find someone who offers what we are needing, and then we find we can't afford it, or it's a waiting list, or the funding was cut. It causes so much stress, and our children end up feeling hopeless and helpless, and then we all feel defeated. You MUST take this all seriously!
Anonymous	equally important
elaine nelson, young adult son with autism	all
Juergen Hahn, Rensselaer Polytechnic Institute	All of these are important topics. Other people are much more knowledgeable than I am on these topics, though, and so I will not further comment.
Anonymous	all of them
Tami	I would love to see all of the above services available for parents and the children. We desperately need more services in Carson City.
Anonymous	All very important.
Warren Schaeffer	Everything
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	all of the above
Rachel Ealy, High School Teacher	I do not see many gaps here. It seems that there are more outreach groups for autism than any other disability area.
Jennifer Keller	All of them ! These would be my priority over those listed in previous questions. Lets study some places that things are working .
Anonymous	All!
Anonymous	All of this research is important and all of it is lacking.
Anonymous	All of these! Far more than bio medical interventions!!
Lynda Domina	All of the above are extremely important
Jessica	all of the above
Barbara S. Delsack, MCPS; CCS, Inc.;Independent consultant	all the above!
Anonymous	Critical
Delia	all the above to.this question
Anonymous	This is the biggest problem families face and it is the number one question they always ask because it is the most difficult to find.

Families need access to services to reduce the mental and emotional burden of caring for those with ASD

Respondent	Response
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	family well being
Anonymous	Family well being
Neva Parkins, Parent and Advocate	We need policies to encourage, assist and support family self-care. It is hard to meet personal and familial needs when a child experiences ASD and consumes all of your time, resources and emotional availability. Getting respite is nearly impossible and should be more easily accessible.
Tracy Robbins, mother/care giver	resources for single parents who are paid care providers for their own adult child. We don't get paid a fraction of the hours we care for them making it impossible to pay a person to care for the client to enable parent to work outside the home. Lack of sleep falls into this as well, it makes for a non productive employee. Maybe research should be on single parents stuck. If this issue could be fixed, it makes for a happier healthier family unit.
Anonymous	Family supporting interventions
Carla Meads	You need to make sure the family is okay...because if they are not the child will suffer. Start with them and make sure they have appropriate housing, medical help, emotional services.
Darlene Upson	Family education is essential in learning how to parent a child with Autism. A helpful necessity for not only parents but caregivers and teachers.
Anonymous	- overlap with question 4 responses - family wide interventions are critical. A diagnosis of ASD in a child should be a red flag for the entire family, including extended family. Family wellbeing is a major area.
Kristi Layman, Parent	It needs to be recognized that the parents and family need support. Where we live the primary focus is getting the children the support they need at school and there is minimal support and education for the parents.
Lindsay Sherwood	Parents and families need additional support. There are ABA therapy services but very little support for families who are taking care of special needs children.
Michael Notaro, University of Wisconsin-Madison	I would love free or reasonable respite care to be available at my house so that I could leave my house sometimes. I am required to stay while my son's therapists are here which is fine, but I get very little done the whole day. The therapists are here about 30 or more hours a week so if I could have a respite worker here sometimes it would be life changing for me!
JoAnna Bryant, Parent	State wide services in place to support individuals/families - appropriate long term care services that allows access to staffing - appropriate reimbursement rates to hire staff.
Lesly, Parent	Biomedical intervention. Creative therapies. Respite care. STOP CREaTING THIS EPIDEMIC with VACCINES
Kristie	Family and well being
Jenny Latham	Services need to happen asap after child is diagnosed. Parents need help in accessing services.
Colette McCadden	tangible support for families
Anonymous, Parent	Families with young adults on the autism spectrum are frustrated and drowning as they try to help their children navigate the adult world. Transition services for young adults on the spectrum, should extend past the age of 21 and be reimbursed through primary insurance and medicaid. There are not enough transition services to adequately provide the education needed to help these young people learn skills to secure competitive employment and live independently. Once they age out of the educational system, many are left floundering with irregular schedules and minimized social opportunities. Transportation is an issue that is problematic for these young people. Driving can be dangerous for them because of issues with attention, anxiety and other challenges. Access to public transportation is difficult for people living in suburban areas. There is a need for affordable and safe supported long term housing options for people with autism who are not intellectually disabled. We need services to help these young people learn how to manage in the adult world so that they can contribute to our society in a way that is meaningful and productive.
Kayla Weant, Prosper Independent School District	I think more research needs to be done in the area of family well-being. Raising a child with special needs is extremely difficult on the parents and they have levels of PTSD that are often compared to combat veterans. More research needs to be done on how to better support the families so they don't feel like they have to do it alone.
Anonymous	Families get worn out and the individuals quality of life is diminished.
Anonymous	There needs to be a support system for parents at the very beginning before the child is school age.
Jeanne Kacprowicz, mother of 13 y/o with severe autism	Families need to have information on reputable information sources for interventions and information. Too many sites offer false hope if you use their product it will cure autism.
Judy, parent	Family well being is huge. When one child takes up so much time then family dynamics are impacted - sibling relationships suffer, marriage issues arise, lots of stress.
Anonymous	Family support and engagement is important throughout the lifespan particularly for the families of adults with ASD. Peer Support programming can be an important component of community inclusion services and provide benefits to engagement. Streamlined access to services throughout the lifespan is an important component for families to ease stress and burden of diagnosis and care navigation over time.
Megan	Most important is supports to the families currently living with children on the spectrum. Research to the cause and cure do not help families who cannot afford medication, medical care, respite, etc.
Rebecca	There are also cases where autistic people are unable to care for themselves which can make things very hard on their family, especially financially. I think these are areas that deserve the most attention in order to make the world safer for autistic people and those around them, and to help relieve the strain on families who have trouble adequately caring for an autistic family member.

Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering

Respondent	Response
Brandy Crainer, Autistic adult	I'd also like to see more research on caregivers abusing autistic people and how we can prevent it.
Jan Ornelas, Brian's Hale, LLC	There are no services available for families who need emergency assistance. If you take your kid to emergency they just drug them and send them home.
Anonymous	There is nothing in place for families that have abusive/aggressive or self-abusive family members. Putting these children/adults into the few hospital beds (10?) that are available, or nursing homes, is not a solution. Letting these kids continue to abuse their family members is also not a solution. You need a solution that will help protect the family, and protect the child/adult with autism. If due to medical issues (IBD pain), you need a way to diagnose that, treat that, for people who aren't aware that is the cause.
Randy Krause, Parent of 34 year old son with Autism	Sound sensitivities, and fire alarm sounds. The National Fire Protection Agency is presently looking at the negative reactions many people with Autism and other impairments, to fire alarm systems. They are unsure how pervasive this problem is, and need that information. They are discussing alternative alarm sounds in special education classrooms.
Anonymous	Safe, small group homes that are properly staffed and funded are crucial for many adults with autism. So are job training and employment that is appropriate for the individual. Fair pay, safe environments, job coaches, and educated employers are all needed.
Safika Erselcuk	The most important factor is healing any medical issues that affect behavior. If the the child is in pain, other therapies will not be as effective. Most of these treatments are paid out of pocket by parents. There needs to be more recognized coverage of these treatments by insurance companies.
Betsy Cohick, IU 13/parent of adult son with autism/ID	Elopement and safety are a huge problem for individuals with autism. Please train all emergency personal (EMT, Fireman, Police and Search and Rescue people. Funding for GPS tracking systems and an easy way for parents to find and access these services. Please also train group home providers to this area of safety concern. When I showed concern that they moved my son's group home next to a house with a pool they thought I was being a over concerned mother. I don't believe they were understanding of the risk. Another issue although small but irritating: Why aren't residential providers allowed to cut finger and toe nails when taking care of individuals in a group home or residential school? Is there a state rule because no one does it officially? I have been told over the years by my son's providers that toe nails must be cut by a podiatrist even if my son has healthy toe nails and that no one is allowed to cut his finger nails. This is costly to have to go to a podiatrist for this reason and it ends up costing our tax payers money because in many cases MA covers the cost. As parents we do cut nails and there have been people that provide care that just break the rules and cut the nails anyway at risk of getting in trouble. What happens to the individuals that don't have family involvement? Who cuts their finger nails? This can be a safety risk for everyone involved. When my son's fingernails get long he can easily scratch and also break away from me easier when I try to hold his hand in the community to keep him from running into traffic. It is unsanitary because germs and dirt can collect under the nails.
Karen Connelly, 2 children in the spectrum	Health and Safety
Mary Leathers	Heath and safety issues for children with autism, especially wandering. We need to pass Avonte's law to federally fund tracking devices through programs like Project Lifesaver
Nancy Shaw	Health and safety issues affecting children with the use of poorly studied vaccines- no true placebo controls, no long-term studies, no multiple vaccine studies, etc.
Anonymous	Who watches over the service providers?
Simon Huebner	A safe haven is where an autistic will find a place to grow and learn the most. This can be at home, a library, with a trusted role model, in school, after school, etc. This is what is needed the most to reach an overloaded autistic.
Shari Campbell	Safety of the autistic children. Many autistic children are at risk of wandering and becoming missing. Many children on the spectrum are non-verbal. There needs to be a way to track these children or adults when they go missing. Such as GPS systems or having a child/adult microchipped. We microchip our pets there is no reason why we can't do this with our autistic population. Whether it be imbedded or placed on clothing as a bar code or chip. Also needed would be a data base or website that would have all information on that child/adult. Maps so parents/law enforcement could track a missing person as we are able to track down lost phones or cars with GPS tracking systems. There are systems out there now that even have microphones but many have not been well received in schools as teachers feel it is a invasion of privacy in the classroom as parents can hear into the classroom. Some kind of system needs to be provide for these special needs people as you almost hear of a missing autistic person on a daily basis and many have tragic endings. There are so many options out there that there is no reason why this cannot be done in this day and age.
Leslie Phillips	Health and safety issues
Anonymous	Health and safety.. First do no harm. Research Vaccines, research GMOs and research pesticides.. None of the research can be controlled big pharma or the government controlled by big pharm.
Laura Cellini	1. We need to identify all factors (environmental and genetic) contributing to the epidemic of autism and take all measures to stop the epidemic. 2. We need to care for those with autism throughout the lifespan and support their families through increased HCBS waivers, quality residential options, insurance coverage for therapies and treatments, vocational opportunities. For those who are capable we must incorporate more opportunities for higher education. 3. We must keep those with autism safe. Wandering prevention programs and tools must be made readily available. Training for police officers, daycare personnel, teachers, first responders and parents must be provided.
Margaret	Health and safety issues affecting children
Leigh Ann Davis, The Arc	People with ASD need to feel safe in their communities and be able to interact with the profession whose job it is to promote safety, law enforcement. We need solid models for both law enforcement training and training for people with ASD in order to decrease the likelihood of 'crisis' situations or situations that could turn into a crisis when a disability goes unnoticed or ignored among the criminal justice system. As people strive to create truly inclusive communities, the reality that people with ASD are more like to be victimized than the general population as well as more likely to interact with first responders due to wandering.
Chanda Jackson	Health and safety issues affecting our children.
Andrew Gammicchia	Safety for adults with autism needs to be addressed and first responders need to have a mandated training in place.
Cassie Melvin	Health and quality of life across the lifespan, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Focus on the treatment or cause of autism rather than the delivery of services

Respondent	Response
Seth Bittker	There are undoubtedly important questions in this area. To me there has been too much focus on it recently though. I would much rather see more funding into therapeutics and relatedly basic biochemistry of autism than into service delivery.
Parent	These are great but shouldn't be at the expense of the medical research needed to bring real understanding of the cause and effective treatment. It is reasonable to believe that most of the autism population will benefit from research and development of treatments. The benefits from these services programs are unevenly distributed and not evenly effective.
Rosanna Armendariz, Autism Community Network of El Paso	I don't have a scientific background, other than college biology 101 and 102, but I can tell you most parents want to know WHY their child has autism and want the scientific and medical community to come up with effective treatments for core symptoms and maybe even a cure someday.

Need for an adequately trained and compensated workforce to improve available services and service delivery

Respondent	Response
Frank J. Kelly	The #1 gap as I see it is that 80% of the services delivered to a child on the autism spectrum are done at school. We are expecting our educational system to deliver medical-grade care of complex neurodevelopmentally challenged children. And although techniques such as ABA are effective the quality of delivery is highly variable. When combined with comorbidities of sleep, sensory sensitivities, GI issues etc. I think we need to look at ways to "inject" medical-grade training and expertise into our already cash-strapped schools to ensure knowledge and training are disseminated more effectively.
Julie K. Dudley, Autism Society of Oregon	Develop a long term plan to train more professionals to do ABA, Sensory Integration therapy, speech, etc, for every child on the spectrum.
Linda Austin	Make very sure that who ever you are working with has a true understanding of Asperger's and has been trained to deal with it. At this point in time our country does not have very many of those kinds of professionals and most times if you are able to find them then the insurance companies will not pay for the services. I have dealt with this issue for the past 20 years and it saddens me to see they way we treat these individuals.
Anonymous	Very little training for educators
Christy Moore, Parent	2. Policy issues: Requiring "autism 101" training for all teachers. many of these children are mainstreamed, and the chance a teacher will have a child with ASD in their classroom is very high. What they learn can benefit typical kids too.
Ella Philander, Easter Seals Nevada	Consider providing assistance to companies that are training and working with interventionists as they become Registered Behavior Technicians
Kristina Czapkay, A.L.L.E.N. Inc.	Training, intense training is absolutely necessary. People need a more in depth view of what autism is and how it can affect a number of different areas in one's life. Having worked in a public school setting for a number of years it is devastating to know that most of the professionals assigned to be part of an IEP know nothing about the disability, or how to best support a student from a best practices perspective.
Anonymous	A huge gap and detriment to delivery of services is education. To note: ASD education is not integrated within medical and nursing curricula. Any content about ASD is "tossed" in pediatrics or mental health courses. Most healthcare providers "learn" about ASD informally. HCP on the front line do not understand how to de-escalate a situation for an ASD patient with ineffective communication. Additionally, Got transition is a wealth of valuable resource for transitioning primary practice to accept patient with ASD. However, this model still must be evaluated for effectiveness. More research to either support or identify gaps is crucial. We need studies on effective community transition models. Evidence based transition models must address community resources-education, housing, employment, healthcare, transportation, support- for adults living with ASD. No studies have assessed community based transitional models. We must have more options for adults with ASD. Those individuals who age out at 22 are destined to live with their parents until parental demise. What will happen to these people!!???
Lela Rondeau	A need for more educators with BCBAs, increased funding for paid work based learning experiences.
Neil A Snyder, American Speech-Language-Hearing Association	There is a need for research in the area of surveillance of qualified professionals providing services to determine the background, training, and credentials of individuals providing treatment to those with ASD and to determine the nature of the services that are currently being provided. What services are being delivered and by whom? No one approach is equally effective for all individuals with ASD, and not all individuals in outcome studies have benefited to the same degree. For clinicians to determine whether an individual is benefiting from a particular treatment program or strategy, measurement of that individuals' progress using systematic methods, such as in single-subject research design, is also recommended. Research should be prioritized that characterizes current ASD diagnostic and service utilization patterns in community settings, examine the relationship between the likelihood of diagnosis and the services available for individuals with ASD, and that also evaluates the effectiveness of these services and intervention outcomes. The development of outcome measures and means of monitoring progress longitudinally should also be considered a high priority. The U.S. Department of Education (http://www.asha.org/uploadedFiles/US-Dept-Education-ASD-Services-Letter.pdf) and CMS recognize the importance of speech-language services for individuals with ASD, and that only focusing on one treatment, such as ABA may not yield the best outcomes.
Russell Goodman	While mental health options can be used for the comorbid anxiety or other mental disorders... and while physical remedy may help with other average problems... The greatest need is for the needs to be understood. Since these vary from person to person, I highly advocate specialized social workers who are willing to work on a flexible schedule (since there is no specific way to guarantee that solution will be achieved during an 'appointment'). I also advocate social workers to become social "net-"workers, who reach out to find the resources within the community, that they may be able to find and socialize and get balls rolling, where the autistic may have trouble with knowing who to contact how and when. These resources will need to vary depending on the age, from adolescent to adult, once the individual becomes capable of expressing their needs (and the rest can be teased out by the individual workers). This could range from needing meals-on-wheels to helping find contractors to evaluate and repair housing conditions (at a discounted or pro-bono rate, or financed by community resources) to needing someone to help remind them when their appointments are.
Hannah Russell, Primrose School	Somehow we need to recruite more special education lawyers, developmental neurologists, educational Advocates, and service providers in general. Wait lists are years long for services, including ABA, not enough providers exist, and help for educational issues is almost non-exist.
Anonymous	Services for older (teen) children with autism are abysmal. What little is available is in the inner city, far from where many if us live. Good reliable Respite and hab workers are scarce to none, and poorly trained.
Marcia Gray	Getting information out to Doctors about what this looks like (and how it looks different in girls than in boys) should continue to be a big push. I have several friends who have had their pediatricians brush off concerns or even pull back on a suggestion of possible issues ("oh, she's now speaking at three, so you have no reason to worry about her late physical milestones, gastrointestinal issues, sensory issues or interest in peers").
Lucy Beadnell	Workforce development research and incentives
Anonymous	There are not enough medical doctors, psychologists, psychiatrists, therapists and counsellors who have the knowledge and tools to help those with autism.
Mary Nally	Provider competency training appropriate education by well versed educators
Andrea Gilkison, Autism Society of Indiana	....even when that is accomplished..there aren't enough providers to supply the demand. As we stand currently: we are in a lose/lose situation.

Improve the service systems and service models

Respondent	Response
Eric Common, University of Kansas	service systems - emphasis secondary and postsecondary education and job settings. The efficacy and quality of services after age 21 is a bottomless abyss.
bob horn, [Minor/Dependent Name Redacted]	most of the problems i have is more with the systems then with my son [Minor/Dependent Name Redacted]
Jacqueline M Ward	Efficacious and cost,effective service delivery
Nathaniel Geyer, MS	In Pennsylvania there is a bureau of autism with a dedicated staff who helps those on the spectum this model is not shared in the other 49 states and should be a model control site.
Bruce Hall, Bruce Hall Photography	There is no simple answer as the autism community is fractured and divided with no end in sight. The internet is a wasteland of misinformation and often bad advice. Years of battling with schools, social workers, and government agencies who "double speak" with phrases like "circles of support" and "hope" wear families down. From the federal government to local school districts the unspoken mission is to contain costs. Families who obtain good services most often have to fight, and have the financial means, or they just pay out of pocket for the best available services, services never available to the less fortunate. Answer, there isn't one place to turn for services. It's a long and difficult road to find the help our kids need.
Lori McIlwain, National Autism Association	NAA encourages the creation of a central channel, such as Autism.gov, which can be more easily shared among advocacy groups, media outlets, and local channels, thereby increasing the chances of consistency and exposure among all populations. The current call center number through Autism Now is easily shareable, and we recommend this number be available through a more recognizable channel with a stronger reporting system. In terms of the number itself, the majority of constituent response indicates the need for increased response time, and more accurate and helpful information. Overall, we feel a comprehensive federal autism plan is needed.
Mary Parnell, Parent	service systems and employment with support.
Anonymous	Policy issues especially in regard to our understanding of abilities and capabilities of individuals with autism. Information not well disseminated within the greater public and institutions (especially the judicial system).
Alexander Frazier, Director, Autistic Reality	The same priority ranking system goes when dealing with other resources. Please steer away from Autism Speaks, as they are a eugenic-minded apologist group that wants to see autism gone and does not believe that the opinions of autistic individuals hold valid weight in the world. Please also steer away from the Autistic Self Advocacy Network, as they often use radical methods such as cyber bullying and character assassination if their very specific, often incorrect mindset is not met.
Anonymous	There should be an autism center in every state ran by parents. We know what our kids need. We won't mishandle funding.
Angela Gardner	IACC and partnering federal agencies must take the lead in development and implementation of service delivery systems that are streamlined, efficient, and available nationwide wherever the needs are by collaborating with states. The IACC and partnering federal agencies need to host a national conference with all state Social, Education, Health, and Human Services Directors to help with this process. The service delivery system should range from birth to death for every individual with ASD. This survey of seven questions should be done every years especially targeting individuals with ASD and their families about the strategic plan to see what works and what doesn't work and what could be improved.
Maria Grullon, Mother of autistic boy	Too many people without any real knowledge, interest in making autistic individuals function better are in charge of creating budgets, implementing treatment, reporting on and making decisions about autistic people is the main reason that services are hard to obtain. It should be essential for special education teacher, ABA providers, speech therapist and involved parents to have a say in the services that are necessary for the autistic individual, instead I never see their opinion even requested when determining services.
Anonymous	service systems
Racshelle Bean, Parent	Due to the inadequacy of the educational system our son needed to be placed in an RTF. Initially there was abuse & he was moved to an ICF-MR. They do not have the proper training either which causes unnecessary stressers on our families well- being. He is denied mental health care (with the person of our choice) due to personality conflicts with the provider & the facility. Our options are extremely limited due to his dual diagnosis of autism & cerebral palsy.

Need to be more and better access to specialized services for ASD

Respondent	Response
Oliver Wendt, Purdue University	investigations into the role of tele-health for diagnostic and service delivery purposes
Anonymous	More exclusive opportunities need to exist for individuals on the spectrum, especially those aging out of public school services. Worship services, apparel choices, and recreational activities just for persons with ASD are especially lacking but needed.
Beth Secosky	Include payment for the Sonrise program at the Autism Treatment Center of America in all treatment options.
Dwight Jennings	The dental profession has failed to develop efficient, knowledgeable models of CMD (all primitive humans bit tip to tip, only modern humans have over bites. Over bites are biomechanically inferior and excite trigeminal, leading to elevated substance p, ie increases systemic inflammation ).
Bronte Abraham, Parent	Many communities offer adaptive programming -- but they are separate programs for kids with disabilities. They are not comfortable offering inclusion supports. It is important to education on the difference between adaptive and inclusive and include both thoughout the life cycle. Also, anything that can help with job placement -- speicifically development of skill based internships is needed and welcome.
Piper Davis	The individual with ASD needs services that extend outside of the classroom. Spaces where ASD children learn social interactions (playground, cafeteria, daycare, and home) need to be sites of intervention. I don't know what tools could be used or what these services could look like because they are sorely lacking for our family.
Bronte Abraham, Parent	Many communities offer adaptive programming -- but they are separate programs for kids with disabilities. They are not comfortable offering inclusion supports. It is important to education on the difference between adaptive and inclusive and include both thoughout the life cycle. Also, anything that can help with job placement -- speicifically development of skill based internships is needed and welcome.
Piper Davis	The individual with ASD needs services that extend outside of the classroom. Spaces where ASD children learn social interactions (playground, cafeteria, daycare, and home) need to be sites of intervention. I don't know what tools could be used or what these services could look like because they are sorely lacking for our family.

Multiple Themes Addressed

Respondent	Response
Paula Roegge	State-based services are shrinking. Many states are trying to save money by cutting back on services or privatizing them, and our kids and autistic adults are losing. when people have to pay more for therapy, they go less often, and its not nearly as beneficial. the public needs to be educated that people with autism are not 'retarded' or 'weird'. They are not the result of bad parenting. We love our children immensely, but we get tired of the stares and strange looks. Tell people it's okay to ask us about our children! Lots of kids with Asperger's are getting service animals. Insurance reimbursement for these ever so amazing and helpful animals would be a godsend. A service dog can mean the difference between a child attending school or college and being forced to stay at home. They can mean the difference between a girl with Asperger's feeling scared at college and feeling safe. Themes Addressed: Increase the accessibility and utilization of services; Need to be more and better access to specialized services for ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Cathy, Parent/Conservator	Research surely is important, but delivery of services and family well being is really important, and of course that includes safety at home and community inclusion. To be accepted in the community not just awareness. Themes Addressed: Improve the service systems and service models; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Carla Charter, Disability advocate	The biggest challenge i have to access services is that i can not drive due to a vision issue. Our rural area has no transportation. Many of the services are localized and unless i can get to the office I can not access them. We have a teen program in the next town over which would be perfect for my youngest but i have no way to get him back and forth as it is on Saturdays and my husband works. there also needs to be more appointment coordination to limit the days working caregivers are attending appointments. Along with this both medical specialists and other professionals need to expand their hours to accommodate those who work. Coordination of services is essential. Also essential is an expansion of medical professionals and other agency hours to accommodate working parents. Appointment hours should not be about what works for the agency or the doctor , it should be about what works for the family! Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Clarissa Kripke, MD, University of California, San Francisco	Health services delivery for children and adults. Racial disparities in access to services and education. Ambulatory sensitive hospital and ER use. Access to mixed methodology early intervention and parent choice in methods. Themes Addressed: Disparities in access to services should be addressed; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Joseph Clark	ASD is a major reason for family breakdowns and separations. Unless one has a personal fortune the family education, community services and support are horrible. Employees working with adult ASD consumers are not paid enough, nor adequately trained. Many employers pay fast food workers more than ASD aids and that's a travesty. We are basically telling an employee that a hamburger is worth more than a human being ! If ASD workers were trained or certified they ought to start at 15 - 18 hr. Paying low wages only attracts low skilled (often foreign citizens with limited English speaking ability) to the ASD aid employment area. better community, to include police awareness. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Kirsten Sneid, Founding member of Autism Society of the Heartland, Bi-State Autism Initiative, Advisory Board of K-CART and former Advisory Board member of The Thompson Center at MU	This is a community health crisis that requires a community response. The dependency on small volunteer non profit organizations such as Autism Societies and Autism Speaks as well as Easter Seals is absolutely unacceptable. State wide centers for Autism Excellence which could offer visiting scholars to help train staff, parents, community providers as well as offer diagnostic evaluations and a one stop shop for medical/psychiatric services is essential until statewide training is established in medical schools,hospitals,clinics and private practice based service providers. I am all for finding the Cause and the CURE but the biggest wave hitting community service agencies is the CARE. States have known this population is growing and being dumped into community services but have allocated little to the training of behavioral health aides to assist at home school or on the job. States have failed to promote and partner with the development of community options for those with ASD. There are unlimited options in looking at private public partnerships in creating communities that offer maximum independent living options with access to jobs, leisure and safety. Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Kristy Barnett	Resources are a concern because funding is not there especially in small rural communities. Autism does not save itself for only big communities that have more resources available. Autism is everywhere. Funding does need to be provided in order to assist with the service delivery and safety issues that do affect everyone involved with a person with ASD. There is a disparity between the medical and education field. The doctors tell the parents that their child has autism; however, it is the schools responsibility for testing and educating. Yet, the federal and state government keep the education budgets in decline and students with disabilities are suffering because the resources are not available in the school system as they should be. Early intervention is the key for assisting the student with autism in the areas of socialization, communication, and behavior. The sooner these services start the better off the student will be. Themes Addressed: Access to early intervention services is a priority; Disparities in access to services should be addressed; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Wendy Wolfe-Womack	All of the above, Services needed are not covered. Themes Addressed: Increase the accessibility and utilization of services; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
vanessa tuley	1. Cost effective service - therapies are outrageously expensive 2. Insurance reform and inclusion of ABA therapy for companies that are self-funded 3. Better autism programs through public school system 4. Safety issues affecting children - elopement Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
A Kimbrell	1) Integrative services model set up for families of children with autism and funding to service such development across states. 2) Required federal funding yearly for families with children who have autism and wandering/elopement issues. Including GPS enabled tracking devices for children with autism. 1) Educational funding for public schools to be implementing ABA (applied behavior analysis) within SEA (State Education Agencies) and LEA (Local Educational Agencies) specifically in rural areas of state where services are sparse. 2) Behavioral services required to be provided by BCBA's (Board Certified Behavior Analysts) or Doctoral level Psychologists. Themes Addressed: Disparities in access to services should be addressed; Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; Need for an adequately trained and compensated workforce to improve available services and service delivery; Improve the service systems and service models.
Anonymous	Community inclusion and service access are both desperately needed as well. Although it is nice to see the latest genetic research in ASD, that is still not going to change the fact that a lot of us are unemployed, unable to live independently or have a community outside of our immediate families. Additionally, the stigma surrounding ASD from the public (complete lack of empathy for human beings, incompetent, potentially dangerous) can sometimes be even worse than any complications from ASD itself. What I would like to see is more research about public perception and stigma surrounding ASD that similar to what is already occurring in mental health research. Negative public and professional attitudes lead to lack of service availability, exclusion from the community and poor health outcomes. It's time that we started looking at how society interacts with people with autism in addition to studying people with autism themselves. Themes Addressed: Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Need for better services to foster community inclusion of those with ASD.
Amanda	This is the most important issue in the Autism community from my point of view. Parents of young adults on the spectrum often have not been informed of services available to their families. They do not know how to access the services. They are often unaware of educational opportunities beyond high school and their children "age out" at 22 years of age. Parents need to be informed at a young age of what opportunities they can pursue for their children. The wait lists are often 5 or more years for many services. Themes Addressed: Increase the accessibility and utilization of services. Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems.
Annette Blanas	An important issue for families has to do with employment. Families with children with autism are often under employed or unemployed because of the care needs of their children. We need family friendly work policies that promote telecommuting options for caregivers. Lack of income increases family reliance on costly public services and promotes a class difference between families living with disability and those who are not. TRAINING FOR CARE PROVIDERS!!!!! The vast majority of providers working for home and community service agencies know nothing about autism or the behaviors that are often associated with it. They also do not have the training or skills needed to help adults make the most of the learning opportunities in the community setting. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Alexandra Tien, MD	Services are expensive and far away--my son might do a social skills group this summer but it is about 40 minutes away and I have to pay a copay at every weekly group. Educational services such as tutoring or special schools are incredibly expensive. More colleges are now offering programs for those with high functioning autism but there is usually a hefty additional price tag for this in addition to the regular tuition. Who can afford this? And no one even knows the track record of such institutions in regard to future employment. The employment statistics for those with autism are dismal, largely due to the social component. The cost to family well-being cannot be overstated--it is terribly hard for my other two children as well. And larger get-togethers with family or friends are difficult because they are overwhelming to my son. Families need financial and practical support with affected members. Autism is an enormous drain on family finances and also poses a huge emotional strain for all family members. Services are expensive, often far away, and all too often not particularly helpful. Medicines are underwhelming in many cases. Many teachers have little to no training in autism and schools are often reluctant to provide services such as OT for sensory issues. Speech is more geared toward enunciation and less towards problems with syntax etc specific to autism. Technology to help with organization is out there but underused. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Stephanie, Mother of 27 yr old autistic son	Family well being? That's a joke. Community inclusion is an ongoing challenge for many families. I was so very lucky that my son obtained the adult autism waiver. 100's are on the adult wait list in Pennsylvania. Cognitive/ integrative and behavioral interventions are not always covered by health insurance. If they are, they are very limited especially for the adult autistic individual. If the client is relying upon medical assistance for payment, it's almost impossible to find a competent provider. Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Anonymous	Services should be more accessible by being: 1. More available 2. easier to access/ navigate the system 3. Increase in cooperation between state agencies: mental health, education, DHR 4. Insurance and/ or education coverage of needed services Themes Addressed: Increase the accessibility and utilization of services. Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access.
Dena Gassner, Arc US/ ASA	1. Service systems (Soc Security/Voc Rehab) are broken; state polices vary from national policies. Choice is being disrespected. No transferability of VR services. Lack of skilled VR providers. 2. Families and individuals need expedited access to supports and services; surrogate representation for first IEPs and/or evaluations to secure services. We can not expect families to become experts overnight and the children suffer. 3. Family well being including autistic parents needing support. " 4. Lack of support for autistic mothers and fathers addressing of co-occurring depression/anxiety/eating disorders/non-suicidal self-injurious behavior/ suicidal ideation/ disparities and gaps in accessing healthcare" Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models.
Cassandra Stalzer, Parent	There are no recreation or therapy programs (that I'm aware of) that have specific expertise in inclusion for kids on the spectrum. Finding services is a full-time job requiring ninja phone skills and an inexhaustible enthusiasm for forms. A standard history and intake form would be helpful. When you find quality services, you feel like you have to be secret about it lest you loose them. I had a Council member try to recruit my Day Hab provider for their own child! A one-stop shop where you can learn what services are offered by whom would be helpful. A centralized dashboard showing openings or status of wait lists would be helpful. An active support or networking group for parents/providers would be helpful. A place to have open, honest dialog with school districts would be awesome. What about a small grants fund for parents to seek out education about their child's disability? Our educational system is not willing to apply the resources needed to serve kids on the spectrum. As a result they might be provided an educational experience that diminishes their potential. It's not a money problem, it's an expertise, imagination, and will problem. An important policy gap is providing supports to parents who, because of lack of adequate services, risk livelihoods to fill the gaps in services or to prevent trauma inflicted on kids by inexpert providers. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems.
Charlotte	There needs to be education outreach to dispel the myths about autism that contribute to the abuse, ableism and hate of autism that seriously affects the well being of those on the spectrum in our society. Better access to services is also greatly needed including help for the caregivers of those with autism. I routinely see caregivers who are overwhelmed and unable to cope with their enormous responsibilities which not only affects their well being but those on the spectrum they care for. Research on how to improve the quality of life for those on the spectrum and their families who support them is desperately needed. Themes Addressed: Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Chloe Dansinger, grandparent of six year old boy with high functioning Autism	education and family well being. Themes Addressed: Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Anonymous	1) service access-make it easier with less wait times. 2) safety issues and supports-education for law enforcement should be required. 3) cost effective and accessible services. Themes Addressed: Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Carol Moore Early Intervention/Early Childhood Special Education	For children, respite and family supports are essential. The burdens, both emotional and financial, of raising a child with autism are enormous. This should not be left for families to manage on their own without assistance. The supports which are available are fragmented and frequently patched together through charitable efforts rather than provided as necessary medical or social services. There are substantial differences between criteria used to determine eligibility under the qualifying category of Autism for special education services and those used by the medical community. I would like to see IDEA specify that a medical diagnosis of Autism is required for eligibility rather than allowing school district staff to decide if students demonstrate characteristics of ASD and providing "educational diagnoses". There are also significant gaps in diagnosis and subsequent loss of services for people with "milder" forms of autism such as Aspergers. These individuals may have substantial impairments that require supports. Themes Addressed: Increase the accessibility and utilization of services; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Connie Zienkewicz, Families Together, Inc.	Physicians need more training on community services and families need to be involved in EVERY decision from diagnosis to treatment. Knowing the Parent Training and Information Center network in the country as well as the Parent to Parent programs which can each give help and support to families from others facing similar challenges. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Barbra Lippenga	I am worried about what could happen if my son wondered off. Most police and firefighters do not know how to handle an older child with Autism. Like trying to talk to them or running away from them. We had problems with getting the insurance to pay for my sons medicine without a lot of hoop jumping. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Cinda Walchli	See the response to question 4. Also, I feel that we need to utilize more of a family centered approach which involves the entire family system into treatment, rather than just the individual. In Alabama the biggest gap in services and policy pertains to High Functioning Autism - IN that most program and service providers are certified as an ID program or an MI program. Thus individuals with autism and a high IQ are not eligible for services in either the ID or MI populations. Thus there is no certifying body that provides services specifically to these individuals. Instead, they get placed in a behavioral population or an intellectually disabled population which can further exacerbate their condition. Themes Addressed: Increase the accessibility and utilization of services; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Destiny	Service access ,utilization ,family well being ,health and safety for all individuals for their life span ! Please do not exclude adults with autism! Themes Addressed: Increase the accessibility and utilization of services; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Mrs. Danielle Oakes	Service access and utilization, health and safety issues affecting children, community inclusion. Themes Addressed: Increase the accessibility and utilization of services. Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
David Feickert	Having the able act pass in all of the 50 states to help family members with health expense like for example psychological care like seeing a psychologist instead of having to pay out of pocket costs and having better health insurance coverages out their. Having doctors be more trained when it comes to Autism espically newer doctors and also doctors who have been praticing for many years. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Jennifer Diers	Availability of qualified service providers and program options for children with ASD, especially in smaller towns cost of services and waitlists for services and/or waivers and financial assistance...we are missing the critical period of development because of this issue. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Jacquelyn Eder Sample	1. Advocacy and assistance in navigating IDEA and support at IEP meetings to enforce the rights of the student and parents. 2. Continuing education opportunities for parents, as well as service providers, specifically occupational and speech therapies. 3. Specialized training for classroom teachers, classroom aides, lunch room workers, etc. regarding how to work with students with ASD. 2. Finding service providers to provide treatment...not just diagnostic assistance. 3. Advocacy in the school systems. Assistance with navigating IDEA and understanding the rights of students and students with ASD within the public school system. 4. Support, respite, and training for parents. 2. Training for parents and siblings and extended family members. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems. Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Ana Dueñas, Michigan State University	Education, cost effective service delivery, community inclusion Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems; Improve the efficacy and cost effectiveness of services and service delivery.
Emily Norton, Parent	I would prioritize accordingly: community inclusion, health and safety issues affecting children and family well being. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Ellen Maurer	Persons with autism are never cured and the group homes are not a good place for them. Service access is denied if the child is 18 and many are not able to live on their own. In home (their own) supports and services are needed. Health and safety issues are being molested as many of these children are easily persuaded and do not realize that it is wrong so the fall prey frequently. There are many gaps, services stop or slack off and many fall through the cracks. For those who do get services it is a long wait for many as long as 4 years. Community inclusion, most people working with this do not understand the definition so therefore they do not understand how it should work. There needs to be more accessible training for parents. Some parents I have heard recently have disorders such as anxiety and depression. When they begin to see their own symptomology they project it to their children and go to the doctor for more medications for their children. Many times they are given the requested medication without question. Research needs to be done to find out how much of the parents increased symptomology is reflected on the children and how it affects the child. Finding services is difficult at best as they are well hidden. Educationally speaking, the schools I have had my son in had a difficult time because they think they have dealt with Autism when they deal with Asperger's and these are two entirely different disorders. One teacher would drag him to a seclusion room by his throat and lock him in with nothing until he admitted he was stupid. He bit her one day and she slapped him so hard her handprint stayed on his face all day and into the night. It was a bruise the next day. Those are the educational opportunities he was offered. In Oregon, I was told that the principal did not have time for IEP's and behavior plans so the school was not going to run them. The program he is in now is better but still has some of this and it is because the so called professionals do not understand the differences. For other services-if they receive them they are cutoff at 18. There is so much needed for persons especially those with ASD and not Asperger's. Services need to be given more funds. There needs to be caps on what can be charged for services in institutions. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Parent	Many parents don't know where to turn. The government outreaches to illegals, why are our disabled children ignored? There must be extensive outreach to families of the disabled. The children's needs must be taken into account. Often times they lump all disabilities together. This is ridiculous. You would not lump together kindergartners with high school students and yet that is what they are doing with these kids who are mentally years apart. Transportation to programs must be provided with proper safety chaperones in place. Appropriate programming must be provided. These kids are taught down to instead of lifted up, if anything. It is disgraceful. Public (and private) education for those on the Autism spectrum is a joke. A special inspector general must be appointed to investigate programs. They are taking government money and providing babysitting, not education. Parents are totally uninformed and many parents have children with severe and untreated Autism. There is no outreach and these poor people are left to deal with the impossible, fighting for what services they can get. They must be given unlimited support, ABA, biomedical treatment, complementary/integrative interventions as early as possible as well as unlimited respite and community habilitation services for their children. There should be security cameras in every special needs classroom, gym, etc. in the country. These kids are abused and debased. Parents should be funded to have nanny cams in their homes so that caregivers can be monitored for abuse. Again, Dr. Campbell-McBride discusses the reason for all the allergies sensitivities that these kids have and how to download the toxins to improve their lives. Many kids recover on her protocol. She should be called in as an advisor and every school in the country made to follow her protocol and to instruct and fund families to follow it. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Access to early intervention services is a priority; Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Anonymous	there is not a good support infrastructure to help one navigate thru the access, waiver, utilization issues. If you live in a good state then you are lucky community inclusion is a joke - when we still have schools that do isolation and do not drive inclusion because it cost too much and is hard services for ASD are lacking - the older you get the less resources! sexual assault, bullying needs to be monitored workforce development infrastructure needs to be established. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	I believe your pediatrician or family physician is the first place to consider. Education and inclusion in the community is critical as well. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems.
Anonymous	1. We need more services for teens and young adults. I struggle to find OT and speech therapy for my young adult daughter with autism, and there is virtually no career and life skills training available. 2. We need more funding for DD waivers -- my daughter is 19, we're nearing 60 and we have another decade waiting for funding. We've been self-funding her education and therapy for 20 years, and because she was not appropriately diagnosed until she was 17, we still have another decade waiting for support. 3. STOP denying SSI claims for young adults with autism! We've had to hire a lawyer to file an appeal, and this is a waste of everyone's time and money. 4. We need more supports for families with young adults with autism. When my daughter was in school I could work at least a bit. Now she has only a few hours a day of transition school (ages 18-22) and I can't find an employer who'll hire me for so few hours. 5. We need a LOT of first responder training to ensure the safety of young people with autism. 6. We need community-based social and career opportunities for young people with autism. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Anonymous	Need for GPS tracking device implantable in nonverbal individuals with severe autism. Educate primary care to refer to known centers of integrated care for ASD. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Anonymous	For me time is the biggest limiting factor in accessing all the services my son needs; if our public education did a better job of providing comprehensive, quality services, more families would be reached...you have to practically have a degree in autism and advocacy to be able to manage school, therapy, etc - something some parents don't have the time or skill set to achieve, and the single best place to give kids access to everything they need is at school. Again, I think one of the biggest current gaps is between the medical and education systems which MUST be closed for kids and families to benefit. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Hannah Reed, MD, Yale Child Study Center	We should consider investing in a network of multi-disciplinary primary care homes for children with developmental disabilities and their siblings. These would not only greatly improve families' access to care and care coordination abilities, but it would also provide a natural platform for integrated research. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Improve the efficacy and cost effectiveness of services and service delivery.
Heather Price, Parent of two children with ASD	Services: We need access to hbot, GcMAF, immune therapies, and ABA. Why is insurance coverage so limited for the wealth of treatments we COULD be utilizing? Far too many parents are paying out of pocket for what WORKS to recover our children. Why can’t insurance pay for a wealth of options when our children are young and their brains are most malleable? We need cannabis legal in every state, as a valid option for families dealing with autism. Parents need to be able to choose the treatment most beneficial for their child. Medicaid waivers need to have portability between states. Parents waiting for residential treatment for their children or placement in group homes for their children are locked into their state. Medicaid waiver wait lists are FAR, FAR, FAR too long. My nine year old son bites strangers, family, and even friends and teachers at school. I want him to have ABA for this and so much more. He’s been waiting YEARS. YEARS. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access.
R. Paleau	Finding services is like searching for the holy grail - doctors don't inform you, schools don't inform you and even most service providers don't tell you the gamut of what's available - you have to find out on your own, from other parents, and then go fight for them. So information about what's available in every pediatrician's office. Then back it up with educational services that make living in the community safer for those with ASD - specific training and opportunities for them to become involved in their communities and to learn how to contribute. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems.
Jennifer Hendrick, Parent	Federal support for "charter" or "learning difference" schools - State public school funding is woefully inadequate and we have a growing population that the IDEA isn't helping. Recreational services for kids on the spectrum.... Themes Addressed: Improve the quality and availability of services within the educational systems; Need to be more and better access to specialized services for ASD.
Anonymous	Efficacious and cost-effective service delivery, and community inclusion. The broader society as a whole needs more education on ASD and how to interact with persons so that more inclusion is the norm. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the efficacy and cost effectiveness of services and service delivery.
Joan McCarty	Service delivery is severely lacking. Schools assume the worst and put kids in segregated and isolated settings where they are (often) abused. Schools say segregated settings are "cost-effective". Separate is not equal (Brown vs. Board of Education) -- we need to remember this. I have yet to find a service provider. I do everything for my son: education and all therapies. I can't afford to pay for it and there is no way to get support for my son. Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems; Improve the service systems and service models.
Tonya Cummings, parent	There is no one good guide for parents and they just have to piece all of this info together over a matter of years themselves. And, they may be priced out of doing what is best for their children. Schools will fight to the end to avoid providing a beneficial education and FULL inclusion for these children. These kids are frequently mishandled and abused at school because they can't tell anyone. Community organizations should be more proactive in inviting parents to get their children out and be included. It's just overwhelming to figure out all of the many pieces in health, education, and community for the family on how to best serve their kid. The main problem is that all of the great programs available are terribly expensive and not all insurance helps out. It would be nice to know right away which kids would benefit best from certain therapies. Behavioral therapy is very important, but also some kids need medication. Very few doctors know what they are doing with regard to meds and many parents are resistant to trying any. The schools are filled with abusive employees and do the bare minimum to follow the law. It's mostly babysitting for them. They fight parents tooth and nail and are willing to spend more on lawsuits than on kids' education. Bare minimum is their motto. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	Simply put the system needs to be much more simplistic. Should not have to go out of my way to get my town to provide appropriate services. Everything is a fight. Schools need to educate typical way more and include them in the educating of special needs kids. stop trying to make a special needs kid fit in a typical world, should be reverse. Community services need to be enhanced. Not much community relations for special needs kids in my town. Most important problem is schooling. Hard to have an honest conversation with your school, when all they are worried about is the dolllars its going to cost to educate my ASD child. That should be number 1 focus for education. Parents come in and say 1 thing and the school says the other. All based on dollars. Terrible way to be. Lot of kids not getting services needed do to towns not wanting to pay. have to hit these kids hard when there young or the system will pay more later. Themes Addressed: Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems.
Jennifer St. Cyr, WithinReach	There is a black hole of resources and research when it comes to ASD beyond age 3. Our early intervention systems are well funded and well integrated - we need more supports and services and less fragmented services for children, youth, and adults beyond the early learning range. Educational, but this must include the community at large. Neurotypicals need education regarding inclusive practices and engaging with atypical communication styles. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion.
Joyce Darbo	Education needs to treat and value children with autism as people first , autism secondary. They need to include them on campuses as part of the the campus , not a special class in the back o f the campus. Complete inclusion means , sports, dances and special on campus events. The culture of campuses need to change to include everyone. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems.
R.Walker	I have used so little services, except through the public school. Policy priorities in education....teaching to specific learning disabilities, and in my dreams, mandating some accommodations that are in the best interests of the child would be nice. We put a lot on little shoulders...to have the law on their side would be great! For parents of children with profound disabilities, the waiting lists for therapy, for Adult living arrangements are shameful. So often, also, they are the primary caretakers with profound loss of income. If CIL arrangements cannot be made, some remuneration to compensate just a little for that could help many avoid poverty living conditions. They are doing their part to to keep cost effective service delivery costs much lower than they could be. Institutions of any type are multiplicatively more expensive. It might encourage more to care for their children at home, I think because it is paid for, they can't afford to keep them at home, if their children would so choose, too. Respite and day care, are important, too, in regard to quality of life. Policy Issue: Waiting lists for therapy, housing,... Education: work towards tolerance of developmental differences and study particularly autistic development instead of making autistic's more "normal" X 1000. Themes Addressed: Increase the accessibility and utilization of services. The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems.
Janice Rushen, parent	Finding services, applying for services, receiving services can be overwhelming. There is too many obstacles and not enough services available. Waiting periods are long. Also, many families are unaware of what is available to them and schools do not help the parents at all in learning about services available. Also, there are too few service places and often one has to travel very far. I think the biggest gap is in finding services in a particular area, the overwhelming amount of hoops one must jump through in order to get services for their child. I also feel that our educational system (public schools) are not capable of handling or understanding children on the spectrum. There isn't enough time, money or teachers who are thoroughly knowledgeable in the areas of intervention and treatments. I feel the children suffer greatly because of this. Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems.
Julie Johnson Coulter, CoulterWorks	Focusing on community inclusion would be helpful as it might help prepare for future employment. Too many young adults languish after high school. We lived in different states and the variance in services in school and therapy was wide. It is unfortunate that Congress hasn't fully funded IDEA. Our son got no help in GA and we moved to NJ, where he received tremendous help in schools (higher property tax). It's not fair that care and educational services are so uneven across the country. I'm not a scientist but these topics are all very important. As a parent, I always felt like we were burning daylight while searching for answers and support. So much of the support needed to happen at schools and if funding isn't there, then children suffer. Please work on coordinating health care and educational support. For example, our son could not get therapy paid for by medical insurance as developmental delay was considered "not treatable". Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for better services to foster community inclusion of those with ASD; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Disparities in access to services should be addressed.
Julie Long, parent of child on spectrum	All of these areas are critical for individuals with ASD: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion. Starting with better insurance coverage for therapy treatments would be the best place to start. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion).
Anonymous	Huge topic area and where to start! Schools, doing s poor job of even identify kids much less providing appropriate treatment other then babysitting them in a special Ed class. Service access/ systems I'm assuming would be an organization like a regional center? Our regional center is understaffed, overworked and we never really benefited from too much from them. Huge health and safety issue not being addressed with kids on the spectrum. Drowning, the leading cause of death among autistic children and virtually no behavioral support (they just dont address swim lessons). I have looked for years for someone somewhere trained to teach asd children to swim. Why is this not being addressed?!?! The average pediatrician does not know much about how autism affects the whole body in many ways. Access to behavioral pediatrians isn't always easy. Trained professional who understand the biology f autism are needed for daily care of these kiddos. Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need to be more and better access to specialized services for ASD.
Katrina Ostmeyer-Kountzman, Integrated Behavioral Technologies, Inc.	1. Service access and utilization: especially in states with limited insurance coverage for behavioral interventions. 2. Insurance denials and barriers to service. 3. How to bring services to those living in rural and remote areas. 4. Involving systems in the effective treatment coordination. Workforce development in rural areas. Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	Family well being, health and safety issues affecting children, education, service delivery. Themes Addressed: Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; Improve the service systems and service models.
Karen McHale	Access to services for people with ASD is extremely difficult to obtain in the US. Many states have cut funding to state agencies that have provided services to autistic children and their families. It's even harder for adults with ASD. As an adult with autism, I can attest to this. We need more and better services for people with ASD and need to make insurance companies to pay far more than they already pay. Especially for evaluations. My children were evaluated by UCLA Autism Clinic, which is one of the best clinics in the countries. For my daughter, insurance fully paid. But, UCLA stopped taking insurance and we ended up having to pay $1500 for my son to be evaluated. But, their evaluations by UCLA has helped them tremendously and has allowed them more services than other children who have not been evaluated by such a prestigious clinic. We need to have much better access to clinics like UCLA. I think the most important research priorities should be on helping people with ASD to manage autism and to function in a neurotypical world. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD.
kathleen dugan, parent of twins with autism	Better service systems and education (school systems) are needed to address this issue. Themes Addressed: Improve the quality and availability of services within the educational systems; Improve the service systems and service models.
K Wentrack	The most important for families with children with autism is long-term housing for families and their children. Also important: service access, education, family well-being, community inclusion. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Leslie Fox, US Department of Education - OSEP	Community inclusion is critical. Part C programs are almost always home-based and services provided beyond Preschool 619 or Head Start Classrooms are limited. The successful inclusion of children with ASD in high quality child care and community settings is important and parents should be coached in how to advocate and support their child's participation in community activities and environments. The gaps in age of diagnosis and access to services between middle-class/white children and minority children or dual language learners are of great concern to me. Many children living at or below poverty level have access to minimal services even if they use Part C programs because these services operate under a "minimum" necessary allocation of service delivery hours and prefer primary service providers to team collaboration. This is in opposition to research which repeatedly supports early, intense intervention efforts. Wealthier families have the opportunity to supplement with private therapy or advocate within their Part C systems with greater savvy. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Disparities in access to services should be addressed.
Anonymous	Knowledge of available services financial access to services support using insurance appropriate education health and safety availability of specialists community inclusion family well being. Lifespan research provider networks provider access to newest research incentives to treat and learn about ASD. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Leanne GoldatE	I believe this would have to be education for families and services available to those affected at a reasonable cost. While my son does have health insurance through his dad's company, I know not all families are that fortunate. Making sure there are resources available to all families is, in my opinion, important. Also, having services available for my son to engage in activities with other children who won't judge him or make him feel "different" or an outcast. Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems.
Lisa White, Family Member	The stress on the family. More support nation wide for family members not just on the East and West Coast. The stress burden is horrific especially with moderate and severe autism diagnosis. When your child "fails" respite care and the caregivers cannot handle them, you as a primary caregiver are alone. Waiting lists for services, low quality of providers due to low pay, no quality medical care for medicaid patients, too many grant funded programs that lose funding and cease to exist. Themes Addressed: Increase the accessibility and utilization of services; Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Loretta Longo	The most significant gaps in services are the availability of educational interventions and the ability to receive/pay for those services. Not all insurance companies must comply with the autism mandate, as they've looped ASD into mental health coverage and there's a strict limit on what can be provided. Parents then have to pay out of pocket for basic services, but often don't know what is needed, at what frequency, or where they can obtain them. Very few parents can afford to pay for ABA, speech, physical and occupational therapy at the level which their child would need to get the services in order to reach their potential. All children with an ASD diagnosis should be approved to receive special education and all services. One day of push in occupational therapy in a general education classroom just isn't cutting it. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems.
Anonymous	Many families with children on the Spectrum (especially those containing single parents) struggle just to pay for basic necessities. Yet, when insurance does not cover the expense of a needed service (speech therapy, facilitated play groups, etc.), businesses that offer these services charge such high rates that they might as well be considered inaccessible. More funding should be made available for such circumstances. Established institutions and service providers throughout each community need to interact early and often with educators and parents of children on the Spectrum to determine and address the changing needs of the children as they grow and encourage sparks of interest shown by the children in the fields these institutions and service providers. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access.
Maggie Halliday	It's still impossible to navigate the system. The school districts should help. The ddso keeps changing names if programs The front door is impossible to find! The medicaid service coordinators and agencies aren't supervised. There are too many of them and they don't do enough to help.it's a constant battle and it all falls of the parent. If the affected child has a parent that can't navigate the system they will fall through the cracks and get no help. My daughter is 18 - finally approved through ddso last year and still had yet to receive a service...I'm told paperwork is still going to Albany! Why does it need to be approved in Albany? ?? It was hard to find a child psychologist. Pediatric neurologist didn't really know much about treating autism. The doctors just ask the parents questions instead of really evaluating the child. The Dr's prescribe anti psychotic meds way too often to children . Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Maria Montoya, Enroll Detroit	Education service delivery should be more of a priority and there are huge gaps in how traditional schools versus charters serve children. Education and family support are needed. Themes Addressed: Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Anonymous	1. Better insurance and more options for coverage 2. Better services through pediatrician office and preschools (public and private). 3. Better services and accessibility to Regional Center. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
brandon miller, autistic adult	Efficacious and cost-effective service delivery, community inclusion, service access and utilization, service systems, education. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems; Improve the efficacy and cost effectiveness of services and service delivery.
Darin McClain, County social worker	There are vast rural areas that have no access to autism services/providers. Such agencies are concentrated in urban areas. Existing agencies/providers are historically used to delivering services for persons with MR and have not adapted well to an autism focus. Persons with significant behavior challenges that most need residential living facilities are the least likely to get it. Need improved collaboration with local law enforcement agencies with regard to the use of emergency/crisis intervention methods and the use of tracking/monitoring technology. Themes Addressed: Disparities in access to services should be addressed; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering.
Maura Donahue, E MARC Adult Foster Care Program	Some families are directed by the Department of Developmental services (MA state agency) to family support centers but others fall through the cracks. Perhaps schools should be referring source ?? Some families who advocate receive additional funding for respite, social and recreational activities and others do not get this. I think DDS and schools/daycare should collaborate on how to get the word out about what services could be provided. DDS also has too many cases and too few workers. We have one transition worker who has 80-100 families. I hear that families who don't access day hab/social programs don't get calls or any follow up unless they reach out to DDS themselves. Some of my individuals don't have ISP plans or goals. Family support and DDS need to offer more free workshops on various topics for community members, including family members. I feel there needs to be more support services such as respite to help caregivers so they don't burn out. My program is a Masshealth funded program yet DDS has decided family members can't access any respite services when participating in this program (AFC). This makes it difficult for families to get a break unless they pay out of pocket or have their own resources for alternative care providers (paid 14 days under our program). I believe family's need specialists who assist them with behavioral interventions in home and school as well as information on speech/language issues. Families need expert advice on medical/pharmacologic issues. While many of the families I work with have a developmental specialist or neurologist, some see general practitioners who don't have the up to date information on ASD. There is an issue for families trying to get in home services. Many people under 18 have parents private insurance in addition to Medicaid and may not be able to access in home behaviorists. There is a huge disparity in what schools offer; many families have to threaten to sue to get out of school placements or additional services. Themes Addressed: : Parents/caregivers need assistance navigating complicated service systems; Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Michelle Hoffman, WA State Dept of Health-Healthy Starts and Transitions Unit-Children with Special Health Care Needs program	There needs to be more workforce development around providers, especially ABA therapists and Centers for Excellence who can provide diagnostic services. Many families find huge support in non-profit organizations who provide social/emotional support and mentoring, as well as some general systems navigation support. Funding should be allocated to support organizations like Family to Family Health Information Centers and Parent to Parent (both are National Orgs.) to fill in the gaps when families cannot access effective care coordination or have access to other publically funded services to provide respite and emotional support. Funding family support organizations more fully would be a cost effective way to ease the burden of families. My son was diagnosed with PDD-NOS, and then a couple of years later, autism, and then high functioning autism--he is very smart and struggled with executive functions in school and almost didn't graduate because of schools refusing to accommodate him through the IEP process and not following or having accountability for his 504. The subgroup of "high functioning" autistic kids often fall through the cracks as they do not qualify for services, but especially in the school system where there is a lot of potential for them to have success (many high functioning autistic kids are very intellectually "gifted" but due to behaviors, those skills are not supported) I hear so many parents express frustration with schools' unwillingness to follow 504's or offer IEP's and there needs to be policy around accountability for schools in addressing these kids--many of whom have so much potential if they can get past their barriers to success. Schools need stronger supports to understand how to be creative in addressing diverse needs of students with autism and an accountability mechanism to ensure they follow individualized plans and demonstrate outcomes. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	Service access and utilization and funding. Community inclusion. Disparity state to state related to early intervening services Themes Addressed: Increase the accessibility and utilization of services.Need for better services to foster community inclusion of those with ASDDisparities in access to services should be addressed
Nina Boal	Make sure that services are available to all regardless of income. Treatment should include not only the people with autism, but the parents and caretakers. Autistic adults need services as well as children. Services shouldn't be cut off when an autistic person reaches 18. Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Anonymous	How can service providers work together to develop and provide appropriate services for ASD individuals with mental health concerns. How can families transition between child and adult services in a way that better meets the needs of the individual with ASD and the family. I am concerned with awareness and services for the dually diagnosed ASD and mental illness populations. Mental health staff often appear to lack training in how to tailor mental health interventions to ASD needs, for example. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Colette Tarrani	Education, service systems, family well-being, efficacious and cost-effective service delivery, community inclusion. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems; Improve the efficacy and cost effectiveness of services and service delivery; Improve the service systems and service models.
Anonymous	Answer is nowhere as the services so called that are available are [Profanity Redacted] poor. No energy to write more on that. Call me. Jane Strauss [Phone Number Redacted]. I *do * understand what is happening both for me and my kids on the spectrum but there are a couple of issues - 1. schools would sooner be [Profanity Redacted] than actually presume competence r teach for independence and 2. I know what services I need but they are simply not available and 3. PCAs are paid so little I cannot get one with more than 2 brain cells to rub together for my son, so I end up on my own with him beating on me and never get a break. Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Medicaid Waiver programs at state levels desperately need more funding. Some waiting lists span 7-10 years based on complicated “crisis tiers.” Meanwhile, families incur heavy expenses out of desperation to help their child(ren). Real-time and on demand training programs need to be made available to parents so that best practices can be shared between families experiencing common issues. Public school systems need additional training for teachers to include children with ASD in typical classrooms so that both parties can derive benefits (special needs children and typical children). More funding needs to go into facilities and infrastructure that provide street signs which alert the public to watch for pedestrians with ASD as they are prone to elopement and wandering. Finally, transition services need to be implemented into IEPs as early as reasonable in order to begin a career path for those on the spectrum so that they may lead productive lives which improve self-worth and community relations. Since Applied Behavior Analysis is one of the few research-based therapeutic treatments for autistic children that has yielded tangible positive results and gains, health insurance companies need to be lobbied to offer it to self-funded employers as part of their standard plans. Many are under the false impression that all employers abide by Autism Legislation which mandates coverage for individuals with autism by health insurers. In actuality, health insurers are mandated to offer such services but employers are not required to include them in the plans they purchase. This needs to change! Themes Addressed: The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Rosalind Gauchat	People in all venues of life need to understand HOW to include people of all kinds of disabilities - especially taking note that each person is unique and individual. There is no one-size-fits-all approach, except for placing your own self in the other's shoes. Best practices for dealing with the challenges of autism need to be taught for both special education majors and regular education majors. Especially for the zero to 3 teaching staff, more support needs to be given. Inclusive environments is a must. The community at large and the police that "protect" it must be fully educated on the nuances of various traits of various disabilities. Everyone must be valued and respected. Themes Addressed: The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Reem Tarantino	There are often long waits for waiver services, especially for adults with ASD. There is a shortage of professionals/staff providing services and supports to people with ASD. When people with ASD reach adulthood, it is too often very difficult to be able to access needed services and supports. Services, programs, and supports for people with developmental disabilities are often not appropriate for the autism population. Caregivers are not given adequate support. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need to be more and better access to specialized services for ASD.
Sally	You need to provide services that support not only the child but also the family as a whole. Services need to be easy to navigate and understand, they should not be something that creates only more stress for a family. Safety should be a top priority for those families dealing with elopement issues, tools/supports to guard against elopement should be available to families in need at no cost. Community inclusion should start within schools and far too often children with ASD are segregated early on because the general ed programs don't have enough supports within a classroom to make inclusion work. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Lynda Dominal, parent	All of these services are important and need to be utilized and combined according to individual need. In the long run it would actually save money and provide better services. There is a serious lack of behavioral intervention availible and in many states such as Utah where my adult son lives very long waiting lists for community services. After aging out of the educational settings 3 yrs ago he has been on waiting lists and losing valuable skills that are job and independent community living related. Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers.
Shannon D'Aquila, parent	Community inclusion is to difficult to mount until community education and direct services are in place. These direct services should educate the family on how to continue these therapies for their child that spends the majority of her time with the family. When the direct service providers are educating and empowering the parents family well-being is likely to more easily fall into place. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion.
Anonymous	The Biomedical treatments necessary to treat these kids as early as possible to be successful biomedically treating heals the child most effectively implements these these treatments through health insurance asap no delays. It isn’t the research Im conserned with its theb services for all of the Biomedical treatments with physicians who specialize in autism that isnt available through the health insurance thst should be there. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Access to early intervention services is a priority.
Becca Lory	Service access, service systems, education, cost effective service delivery, community inclusion. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Improve the service systems and service models.
Anonymous	This question misses a huge population - the aging parent who is caregiving the middle aged person with autism. There is also a problem to find the right placement for a person with severe sensitivities, complicated medications, and high intelligence. These folks to do well in group homes because others are often IDD. Sensory issues are not accounted for. Staff lacks understanding of medications especially those that are given as needed according to observed behaviors. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Ms. Michelle Wolfson	Community inclusion. Family well-being Efficacious and cost-effective service delivery. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Suzannah Williams	Professionals need to know information about necessary services and where they can be obtained in their community. Pediatricians, diagnosing psychiatrists or developmentalists, and special education admins should have easy access to this info and know they are responsible for providing it to parents. Many parents don't have time, knowledge, or resources to know where to start with treatment/services, and professionals are too often focused on only their part in the picture and don't know how to inform parents if they ask for help. Can autism advocates push health insurance policies to recognize autism as a biological syndrome with essential medical needs? Parents need assistance financing OT, PT, speech therapy as regular, ongoing treatments for a medical syndrome. Schools are underfunded and unable to adequately address the needs of many autistic students. Not enough aides are hired. Not enough training is done. Admins try to limit all services and supports that cost $ (like summer school), which results in high anxiety, behavioral acting out of distress, and poor learning for many with autism. How can we better fund and train schools? For example, Prizant's SCERTS model for education could be a training foundation. Can Congress be lobbied to fully fund IDEA? Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	Community Inclusion for teens and adults as they exit high school. Family Well being and being able to have support systems within the community. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Teri Doolittle, PA-C, MHP, DHSc	Cost-effective services delivery will result from streamlining and aligning eligibility determination processes, evaluation processes, and data sharing integration with the large-scale genetics and co-occurring condition studies. There is too much waste, delay, data loss, duplication, and unintentional fraud as people try to make the paperwork go through to benefit a particular agency of service. Until we make the eligibility determination process a nationwide standard, following the person, there will continue to be an uncontrollable blizzard of paperwork, plus increased costs to families. Streamlining eligibility determination processes between agencies, state and Federal. Creating a unified eligibility determination process based on diagnosis and functional status, not on income. Streamlining the diagnostic and evaluation processes to avoid waste, duplication and unintentional fraud/abuse within the disability documentation processes. Making eligibility for services transferable within all states and territories. Interoperable and standardized recordkeeping with controlled access and permissions set by the individual or their legal guardian. Themes Addressed:
Anonymous	All of them. Information to families of services available. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion).
Wendy	There are hardly any services at all. Regional Center just wants to pay a case manager to come to your house once a year to fill out their forms so they get paid. In-Home Service Support's main objective seems to be denying any services whatsoever for families. I'm a single mom who has worked doing medical transcription for 23 years so I can stay at home to watch my son working for less than minimum wage. I'm the only person taking care of my child and I have never been approved for services. The IHSS service workers are flat out rude and sneer at you when you ask for help. The entire system needs to be reworked and a large percentage of these "case workers" need to be fired. Education needed for those in medical profession, doctors, nurses, etc. I usually have to explain my son's condition to them, especially PAs and nurses. Until the professionals learn more, there is not much we can expect of them. Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery.
Anonymous	Access to affordable services with good professionals outside of the school system through insurance is key!! And family respite options would be unbelievably helpful. Social skills are nice, but the number one issue that will keep an adult from being able to function in life is if they scare people by being violent, e.g., throwing a chair, or screaming, even if not actually hurting anyone. That kind of behavior gets them kicked out of school as a child, and eventually thrown in jail or put in a special institution as an adult. They need to understand that this behavior, even if it is due to brain differences, is a real disability. We need to provide therapy and/or meds to help give kids tools to not melt down if they can't handle a strong emotion. I mean meds that give them enough control of their feelings to be able to practice the skills they need and access therapy. They need to be able to calm themselves, be able to remove themselves from a situation they can't handle, advocate for themselves for what they need so people will understand their behavior, etc. by the time they are adults. Medical coverage for mental health, even with the laws in MA, is TERRIBLE!!! These kids need to be covered for speech therapy to learn how to work in a group without becoming frustrated, and for psychotherapy to learn to handle strong emotions. We need many more providers! My family happens to have enough money to go to good people who won't take insurance because the paperwork requirements are overwhelming and they don't pay enough, but most parents cannot. It is cost effective to the taxpayer to provide these services for people as children. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD.
Amanda Mantua	Locating services is hard. Really hard. Much harder than it needs to be. There are families out there that have no idea where to turn to for services once they have a diagnosis, if they can even get a diagnosis. Once a diagnosis is made, support agencies should be able to be notified by the agency making the diagnosis to reach out to the family, or literature on the service providers should be available by the diagnosis giving agency at the time. There shouldn't have to be such an exhaustive searching process once autism is diagnosed. For low income families dealing with autism, having to constantly battle for services is difficult. Many families don't have access to services simply because they can't afford them, but tend to have the most need for them. Insurance companies as a whole need to do better in making sure children with autism are provided the services they need to make the most of their abilities and learn coping mechanisms for dealing with society once they're no longer children. ABA has made wonderful progress, and more providers should cover it, and cover it for longer than just age 6. Themes Addressed: Disparities in access to services should be addressed; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Alexandra Valentine, parent of a young man w/autism	Service access and utilization, service systems, family well-being, community inclusion would be the top for our family. Need trained people to work with the ASD population, understanding the communication and behavioral abilities.Themes Addressed: Improve the service systems and service models; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
Alanna	Service access in general would be greatly improved by online live chat assistance on the internet instead of just telephone services. Quiet spaces in community areas. Less fluorescent lighting everywhere. More self-checkouts, more detailed written instructions with illustrations too. Where can I turn to for services? Preeetty much nowhere. Kids can get CPTSD by getting vinegar sprayed in their faces for ABA but that's about all anybody offers is aversive conditioning on an abusive level. Practical help is not available. Best option is again to seek out other autistic people and ask their advice. Especially of the autistic person in need of services is older than a toddler. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	I believe that one of our biggest gaps includes the lack of information and resources available for families that live in rural areas. Our educational programs need improved and greater support and more hands are needed in the classroom!!! What we have is not enough to ensure the best quality care. Support services need better qualified employees that work one on one with the children and their families. If education and pay was increased for direct support and instructional aids then retention would not be as high. Consistency is the key. Schools that only pay 180 days a year with no bennfits lose quality employees that have the heart and passion it takes to work with those on the spectrum. Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
allison velarde	This is a HUGE issue for parents, especially low income families. I believe each county or area in the US should have a center, similiar to the UM CARD center (University of Miami, Center for Autism and related disorders) so that a complete evaluation can be done for a family in crisis. There needs to be a strong service coordination program as soon as there is a diagnosis as early intervention appears to be one of the most effect ways to work with a child with autism. A biomedical protocol should also be covered by medical insuranace. We have large expenditures monthly for supplements and vitamins that are not a typical OTC variety. Doctors that use a biomedical protocol are sometime cost prohibitive. There needs to be affordable ways to diagnose and treat children and adults with autism using empirically studied protocolsThemes Addressed: Access to early intervention services is a priority; Disparities in access to services should be addressed; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Amanda C Nicolson, California Autism Center	Access to services is a serious issue. Even in the best areas of the country, families struggle to find the resources they need for early treatment. Programs for youth and adults are even harder to find. Services for other family members (like counseling) is sorely needed as the family unit is severely effected (marriages and siblings). 2. Funding for all services - especially programs for older children, youth and adults. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Alice Ospovat	Parents of young children with autism often find it is very difficult to access any services unless they are independently wealthy. The behavioral problems associated with autism, along with delayed language skills and potty training, mean that most autistic 3- and 4-year-olds will be rejected by most daycare and preschool programs, and there are no public school programs to fill in the gaps. Head Start is only an option for some kids (those who are disabled enough, or poor enough, and even then only if the waiting list isn't a mile long). For the rest, there are few options, even for basic child care services. Many parents of autistic kids find that it's impossible to have a job outside the home unless they have a stay-at-home spouse or another relative to provide full-time, in-home care. This, in turn, puts stress on parents' relationship and on their ability to maintain a stable home life for their kids, on top of being a huge economic hurdle for them.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	I actually don't have an answer, because until we got the diagnosis, support was limited to extended time for testing, and other fairly passive responses to my daughter's issues in school. Furthermore, her father's response (punishment for work not accomplished) has served to damage my daughter's ability to function in a useful way. Services are few and far between in Maryland, if a child isn't recognized as on the spectrum. ADHD may be an indicator of more than just daydreaming. When a child receives a diagnosis, a parent may seek out all sorts of solutions that lead to quackery and result in the provider taking advantage of the parents' desire to do what's best for the child. This "epidemic" of children on the spectrum isn't a surprise. Highly intelligent people are drawn to each other. Given that this is the case, it's not a shock to see more kids developing these delays and other issues. If the school is the source of identification, or the parent has to pay exorbitant fees to determine the truth, how does this help? Testing services and screenings for hearing and eyesight are often given by elementary schools early on. The same sort of screening for Autism signs could catch HFA far earlier. We only just got our diagnosis for the rising 11th grader and are receiving pushback from the middle school for our rising 7th grader (her sister). I want an ability to get those support services in place to assist the younger child with potential issues in school before they become problems. The school's reluctance to provide support based on intelligence testing alone would seem to be a problem. When parents don't have the tools they need to advocate for their kids, and when schools willfully disregard the needs of these kids, we wind up with holes in the system, into which our kids fall and fail.Themes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems
Anonymous	1 service access & utilization 2 cost-effective service delivery 3 health & safety issues 4 community inclusionThemes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	Community inclusion is of utmost importance, and would be supported by education and improved access to affordable service systems, as would family health and safety. I'd like to see more research into effective accommodations, especially alternative modes of communication, with the goal of allowing autistic people to participate equally in the workplace, in schools, and in society in general. I'd like to see policies meant specifically to protect autistic people from discrimination and mistreatment on the basis of their neurology, recognizing the barrier that societal prejudice and against the disabled and neuro-divergent can present in all aspects of life, and the negative impact that pathologization of autism by psychiatry and the medical establishment has had, and continues to have, on the autistic community.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	coordination of care medical advocacy and systems navigationThemes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Parents/caregivers need assistance navigating complicated service systems
Blake Hall	All are equally important. Services and policy regarding appropriate educational environment and supports.Themes Addressed: Improve the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	On Reseach: Trufully I think that there is too much money being used on research and not enough on actual treatment/services. On services in general: Obtaining services is often difficult when you live in a smaller town such as my family does. Themes Addressed: Increase the accessibility and utilization of services; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Service access for families that live in rural areas. Family well being and access to appropriate, cost effective services. Early intervention is key, but education around services available is important.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
David Radford	Access to services is difficult and time consuming, often with lengthy wait times. Depending on geographic location, the quality of services varies, often with economically challenged families not being able to get the needed help for those affected. Need more public education to create a public awareness. Access to behavioral services is appalling. Wait times are often over 30 days, referrals are often needed, and insurance is rarely accepted. It makes getting access to needed therapies, medications, and support nearly impossible and extremely frustrating to say the least. We also must do a better job of creating public awareness, this leads to funding and policy change. With estimates around 1 and 66 children affected, that his a huge population of Americans, and a considerable voting base. If we could engage those affected by ASD, their friends, family, neighbors in a more proactive and interactive way, then we have a better chance of change policy, access to care, early intervention, etc. Social media presence must be increased and directed toward a younger demographic, the teens on their phones, etc.Themes Addressed: Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Stacy	Luckily I met a woman who worked for an a special needs organization. Before her, I did not know that my son was eligible for mass health, and that he needed a specific type of mass health to get the services he needed, such as in home therapy. I did not know that he could get a therapeutic mentor to help him with social issues. This should be common knowledge for people who get a diagnosis, it should be easier to find this information Also, people on the spectrum shouldn't have to fight so hard with public schools to get their children what they needThemes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems
Anonymous	I think there should be an option to have our child in public school year round, summers are difficult and finding an affordable program for our child is nonexistent, and having to set up outside speech/OT therapy each summer is a burden on all involved. How can parents keep a job with all these schedule changes? Something needs to change in the way we care for all those affected by Autism. The outlook is grim with not enough services and funding and the rapidly increasing cases of Autism something has got to be done to ensure these folks get all the services they so desperately need! The enormous gap in state by state Medicaid services and extremely long wait list for services needs to be addressed and changes need to be made! ABA therapy should be covered by every states Medicaid. The thought of having to move to a different state because they have better access to needed services is ridiculous but in my case, and a lot of other families, it seems to be an inevitable next step!Themes Addressed: Disparities in access to services should be addressed; Increase the accessibility and utilization of services
Ellen J Brummel	health and safety, and service systems seem most practical. family well-being should be set up in a very pragmatic mannerThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Carol Bunten MD, The Vancouver Clinic	Support in public schooling towards inclusive educational practices must be supported with funds from the federal government to ensure equity. Teaching teachers to adapt curriculum for all students is a huge priority for all students, not just with autism. Respite care for families affected would be a useful service. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Nancy Cheak-Zamora, University of Missouri	Disparities in early intervention services for racial and ethnic minorities and those in rural communities; health and safety issues, services promoting independence for youth and young adultsThemes Addressed: Disparities in access to services should be addressed; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	The top areas of focus regarding available services should focus on public education for these individuals, health and safety, and including these individuals in the community long-term. In order to support these individuals as functioning members of society in the future, these issues need to be addressed.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	Still more needs to be done in the education system to accommodate autistic children and teens. Inclusion in regular classrooms needs to be a priority as many autistic children learn behavior by watching others. Regular (not special education) classrooms provide a model for how to act in a classroom setting as well as in public. Many insurance carriers limit visits. These children need multiple weekly therapies year round. 20 visits does not even cover half the year. ABA should be covered through insurance as well. Recreational therapies (horse riding, swimming, etc) should be considered for coverage. We need to dispel the stigma of autism. PSA's. Education in schools not just for teachers but for kids too.Themes Addressed: Improve the quality and availability of services within the educational systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Cindy Montgomery, Teachability	Community inclusion, especially for those about to enter the workforce, is a top priority for my company. Family well-being is a top priority for my family. There are not enough services out there for dads. Also, finding a way to educate the community about autism may make everyone around us a little more understanding and relieve family anxiety.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Allie	Educational services are dismal. It is incredibly difficult to get services if a child's IQ is normal, even if the adaptive functioning is very low. ...services for individuals with dual diagnosis (autism and mental health disorders). Education, ... and to the Latino community and other cultures who believe autism to be a life limiting disorderThemes Addressed: Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	Doctors need to do a better job of explaining the services available to help families. When we got our children's diagnosis, it was like I just got clubbed in the face. I was in shock. My dream for my children's future was just taken away. My children's doctor simply gave me a series of pamphlets to get ABA, SLP and OT with no explanation of what it was. Also, parents need more access to respite. I love my kids, but they are physically, emotionally and psychologically draining. I need time away from them to get groceries, go to Target, get my own doctor appointments knocked out, etc. 1. Universal insurance coverage for all services, therapies, treatments and medications for ASD 2. Close the loopholes so self funding employers' insurance companies must pay for ASD services. 1. Poor insurance coverage 2. Poor parent training opportunitiesThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	provide funding for stress management supports for parents so they can maintain their own health to care for their challenging children increase respite resources for families train emergency rooms, healthcare workers, law enforcement in autism and effective ways to support familiesThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Wanda Ross Padilla	support caregivers from isolation. Education: public schools vs private schools? Teachers sensetive, patient, knoweageable, give protection from bullies, socialization...prevent isolation, train autistic kids & adults how to respond to negative suggestionsThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems
Autism mom, Autism Society member	There is a ridiculous amount of disparity between states on services. It creates "autism refugees"--parents that can afford it move to more advantageous states to receive services. States should have more requirements to provide services across the board. We need services, we need support, we need inclusion. ADA should encompass autism. How can environments, like schools, universities and workplaces, etc. be accommodated? ADA should be more than ramps. Ramps are an important start to allowing mobility access, but what about neuro access? We need more public knowledge of autism and also more public support for including our kids in society.Themes Addressed: Disparities in access to services should be addressed; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	The family needs a support system in place, a resource for questions, especially at the time of diagnosis. ABA therapy should be more affordable and available. Safety issues needs to be a priority! Autistic children wander off and it is frightening!! Especially in the school setting, the safety is a concern. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Christine Lai	Most schools are not adequately prepared to deal with the onslaught of autism diagnoses. Public schools assign an aide to the child for a number of hours that roughly corresponds with their level of ability, but that aide is rarely trained in a way that prepares the child for coming adult life. If a child has a 1-1 aide from age 3 to age 21 and that aide is not properly prompting and training the child for eventual independence, that child at 21 will not be prepared for any level of independence and the school system will have failed at preparing the child for the world after school. There needs to be a new school system - a hybrid of the inclusion model and the special ed model which allows children access to the level of support they need, as well as continued access to other typical children for social interaction. The true inclusion model does not work when there are many disparate levels of need for many diverse children. Police and other emergency responders need to be better trained to recognize signs of autism and other developmental disorders, to prevent misunderstanding and potential injury to this population. As yet there is no national mandate for police training in this area. A national swim initiative needs to be established for children with autism as many elopements end in accidental drowning. Themes Addressed: Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Cyndy Langat, Kenya Autism Alliance	We need a-one-stop-shop for such resources of all age groups and genders. Systems should speak to each other so we all stay informed. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Parents/caregivers need assistance navigating complicated service systems
Anonymous	All of the above is important! We need better paid staff with good benefice having gone through serious training, being educated on this condition! It's not an easy job but can be a very rewarding job!Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
J. Berryhill , Autism spouse and Parent	Health and safety are huge concerns. Efficacious and cost-effective services are always a concern. Even with good insurance, it's thousands of dollars per year to access all the therapies my child needs. And there are very few states that have anything in place for teens and young adults. Parents are giving up their child to be a ward the state to access residential facilities and treatments that the child desperately needs. It's a burden on the state to do something the parent would gladly do and pay for if only the facilities and supports were in place. Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
William Craig	The major priority for parents that already have children with ASD needs to have access to research and cost-effective services. We have had no such support, while [Minor/Dependent Name Redacted] was growing up, and have simply had to learn and teach ourselves. It is daunting to know that once my daughter turns 21, than public assistance stops. I have looked a current facilities in Memphis,TN, and it is pathetic. I went to one facility that had over 100 children in a large gym like room with 2 or 3 helpers. There were children that were retarded, violent, etc., and other children sitting in the corner in soiled diapers, and filthy, all in the same room. [Profanity Redacted] would freeze over before I would allow my daughter to go there. With her beauty, she could be raped, abused, and ignored and be unable to tell a soul since she is non-verbal. What would be great, and this is something I'm looking into, is opening a Autistic Center in Memphis, TN that not only gives ASD children a safe place to go, so parents can go to work, but also and help teach these parents, the dynamics of living at home with a Autistic child. Government assistance would be a blessing and welcome. It would be wonderful to collaborate with other parents that have children like mine, that need extra attention.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Anonymous	Education, service access and utilization, service systems, family well-being, community inclusion.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Improve the service systems and service models; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	All of the above are extremely important. It is hard to find out about all service systems that are available. Access to and utilization of services is difficult if the person with ASD is not able to independently travel to the services. Education has not been modified to create ways for the person with ASD to experience sincere success. Diagnostic assessments are too general, often require responses completely unrelated to the specific person's challenges, and don't give meaningful information to parents. Community inclusion is difficult to access if you don't have a lot of money. Often the classes and social events offered by cities cost a lot of money (due to the need to pay for staff), so some people can't attend the activity solely because of the cost. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Debra Schafer, Education Navigation, LLC	Having spent 17 years working with parents nationwide as they advocate for their children in school, I can tell you that the process and system is broken. Districts have the ability to keep parents in an endless loop of delays and to spend thousands to fight parents for services and supports that could easily be provided. Parent accessing private services find themselves overwhelmed in terms of costs and scheduling, with little support from their employers in terms of flexibility. ASD has a tremendous impact on the family, and while there are countless support groups helping parents connect, the impact on families -- finances, marriages, siblings, extended families, work, and health -- cannot be overstated. Services are the foundation for supporting children and teens with ASD. School district services are often insufficient, requiring parents to augment with private services, the costs of which are often prohibitive. Community inclusion is improving, yet education is needed across all stakeholder groups to truly understand autism spectrum disorders. There are many misconceptions and the media also plays a pivotal role here as well. Infrastructure issues as they currently exist are family-based... Another point -- schools keep the "bar" low for many children and teens with ASD, leading them to graduate from high school unable to work, attend college, or live independently. Far too many children are placed in "life skills" programs that do not capitalize on their strengths and provide them with opportunities to excel vs. exist.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Big C's Mom	Families need more information available to them. Schools need to concentrate on educating the general education students in their classes and teachers since many schools push for integration in the classrooms. This does not help our children, they are still being left out of group projects, picked on and singled out from the rest of their peers. Safety is a big concern when placing your child in a school. If there is overcrowding it's impossible to get an approval to transfer your child. There are ways to fight it, but most parents do not know how or where to start. Word of mouth between families is currently the best source to find resources. The retention rate of trained staff in state and city offices that are built to help educate and offer assistance to families in dire need is very low. Every person you speak to at these federal offices tells you something different and you turn away feeling even more let down. Either you know how to work a system or you go in and expect someone to know their job well enough to help walk you through getting your child help.Themes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems
Destiny , Mom of two on spectrum	The costs for autism are astounding. There just aren't enough workers in the field. We've qualified for help many times through insurance and other government funded programs. The issue becomes finding someone willing to work only 10 hours a week for minimum wage. 40 hours on minimum wage is difficult, how can we find anyone to help on less? There needs to be a complete overhaul of the education system for children with autism and disabilities. What many schools call classrooms are more like holding pens where children just learn more obnoxious behaviors. ABA is the only proven therapy to help and yet, very little, if any, of this therapy is happening in school.Themes Addressed: Improve the quality and availability of services within the educational systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Chris	Service delivery and access that is affordable to eligible families, along with supplemental support services, including community outreach and education.Themes Addressed: Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	Yes! This is exactly what needs to be focused on first over any thing else! Service those in need now! Research is great, but not at the expense of so many who are doing without proper intervention and educational services. Teens and adults need services too! These services weren't available and/or covered by insurance when early intervention would've been the best option. It's not too late for them though. Social groups and skills training and educational interventions to address known deficits are crucial in order to lead meaningful and productive lives! It needs to be affordable to everyone! Research a way to financially help families with kids on the spectrum to get their children the help they need!Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Services are impossible to get unless a parent devotes all their time and energy to that. It shouldn't be that hard! There are very few community activities for students with asd. There are no mental health services available in the school for students with asd. No family supports systems available, or interventions. Human services are not doing their job, they drop students for not making contact in 30 days, and refuse to even assess students based on their IQ. This is too much for most families to navigate. I work with high school students, and the biggest gap is getting mental health services for students with asd. I had a student whose daily living skills were at less than 1% when compared with his peers (using a standardized assessment). Dept of human services said he did not qualify for services since his IQ was in the average range. That is heart breaking! Human Services have refused or dropped many services for our families. I had one worker tell a family her case load was too big, she couldn't take another client. This is the same student that scored at -1% on daily living skills. It's very frustrating for teachers and parents to have little to NO outside support services, or to make the supports so hard to get, that parents quit trying and give up.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Anonymous	Schools should be required to include children with autism with neurotypical peers. EVIDENCE BASED PRACTICES NEED TO BE REQUIRED IN SCHOOLS These practices are well researched. For example, this is documented in reports from the National Autism Center / May Institute and UNC / FPG: http://www.nationalautismcenter.org/national-standards-project/phase-2/ and http://autismpdc.fpg.unc.edu/sites/autismpdc.fpg.unc.edu/files/imce/documents/2014-EBP-Report.pdf. With simple, but proper training, it should be easy for school systems to implement these proven practices. The above reports even discuss resources for implementing cost effective training for educators. Unfortunately, most education systems do not use of evidence base practices for helping children with autism. Pivotal Response Therapy is one of the most highly touted evidence based practices for helping children with autism. This was developed by Drs. Robert and Lynn Koegel of the University of Santa Barbara - California. We have seen it help children with autism. Unfortunately, we have also seen school administrators fight against implementing evidence based practices like this. Administrators seem more interested in protecting their ignorance than helping these children. It's important to note that attending a 1 day seminar on a practice is insufficient. Educators, including para-educators that work with these children require proper training. Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Daniel Valencia, Autistic Self Advocacy Network	The most important policy issues are those that affect the entire disability community, such as stricter enforcement of laws already on the books (Americans with Disabilities Act, Individuals with Disabilities Education Act, etc.) and enforcement that considers the realities of autism, rather than assuming that all disabled people are neurotypical wheelchair users. Currently, autism research focuses far too much on causation, which has no discernible benefit for currently living autistic people, nor for parents of autistic children. Research should instead be designed around understanding autism, for example by studying the relationship between therapy methodologies and self-reported quality of life. Furthermore, the most readily available services are actually a detriment to autistic people's well-being, the most prominent example being Applied Behavior Analysis, an unscientific, abusive practice which combines the techniques of dog training with conversion therapy for gay people. Public services for autistic people should instead address basic needs such as communication devices. The most obvious gap in current government priorities is a lack of public recognition on topics that the Autistic community is already well aware of. Examples include the purposes of stimming and echolalia, services to prevent meltdowns and burnout, and the fact that autistic people are more often members of the LGBT community compared to general population statistics.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Ms. G	aggressive professionals specializing in all facets of autism care must be researched to avoid the complacency of today. care agencies in most states do not implement cameras as they deem an invasion of privacy. The only privacy they protect are their workers and not those of the unspoken angels who are at their mercy. Advocate and be the voice of the voice-less!Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Elizabeth Farris, Dallas ISD/Dallas TX	Services are provided through the school system, but training and resources for the teachers tasked with educating students with autism are limited or non-existent. Inclusion in the LRE is not inexpensive. Students can be successful, but investments need to be made to ensure that teachers have the on-going and effective training they need to support students and that resources in materials and people exist to support the student and the teacher teaching them. We put a lot of lip service to caring about children succeeding, but very little concrete evidence of what we claim to believe. Within the school systems, teachers need better training on what are characteristics of autism, which can lead to earlier identifications. Within the school system, support, resources, raining, and services are grossly limited to support students with autism in an inclusive setting. The public school district teacher does not have the training, resources, or any way to get them, in order to effectively serve and educate students with autism effectively.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	All of these are important. also important is to look at race and ethnicity, gender, LGBTQ identity, income level and how that impacts services--which you can get and whether you get any. we need more intersectional research and advocacy.Themes Addressed: Disparities in access to services should be addressed; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Elizabeth O. Morejon, AOTA	Service access & utilization first, then education, finally community inclusion. Many parents are not aware of the services available to their children. The education system needs to be held to a higher standard especially general education teachers and administrators and there needs to be more community-based inclusion for these children, which in turn will positively impact family well-being. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Lara Evans	All the above. Funding and availability of all of these areas is minimal to none. No where near what's needed. Services are difficult to find, not consistent, and difficult to get into due to cost or limited availability. ASD kids that don't have large financial resources often end up depending on family and disability services to 'exist' for the rest of their lives. There is no young adult assisted living facilities here in Nevada. This puts many at safety risk, especially after family caregivers are gone. Educational support services, programs, and opportunities are severely lacking for children on the Autism Spectrum. Children are often handicapped for rest of their lives due to this. There are some services for children up to elementary level. After that... NOTHING!!!!Themes Addressed: Improve the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Erika Schron	What services? Our sons were only ever able to receive Speech therapy and Occupational therapy, we provided the rest at home that they needed. The educational establishment is not able to teach our children to the best of their ability because they use a 'one size fits all' approach to education, which doesn't work for a special needs child. What happens when a child turns 18 or 21 and out of school, then what? What services are there for the young adults that are not able to live on their own? Or those that need adult living facilities? Where are they supposed to go? Medical insurance and schools need to provide more than the basics to our children's bio-neuro-developmentally affected children, other therapies need to be accepted beyond ABA, Speech and Occupational therapies. Our children need medical help that needs to be covered by private insurance and state medical insurance. Our children need therapies to move forward and be productive citizens and they also need to be medically able to be productive, to be healthy and that's the areas in which need the most help. The alternative medical field and the mainstream medical field need to start working together to help our children. The DAN/MAPs doctors are a great start but there needs to be more of them.Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Anonymous	Somebody please create the "book!" The one thing that can guide us all to resources. There are so many different government organizations that can assist us but it's too difficult to maneuver through them all without support. Too many websites to sift through. We need more funds for adults on the spectrum to provide services that will allow them to live independently or in community. Get rid of State Supported Living Centers! Mandate that all insurance companies cover scientifically proven interventions. Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Lindsey Craven	The school systems use seclusion and restraint for behavior modification. The practice needs to end. Teachers/educators need better training and supports for our youth to become successful and not shut down Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Lack of health care coverage for ABA and other interventions by all Federal Employee Health Benefits (FEHB) plans which the Office of Personnel Management (OPM) has approved for the FEHB in all 50 states and territories. School administrators lack of knowledge about autism. School administrators bureaucratic mentality and/or lack of interest during preparation, implementation and execution of 504 plans and IEP's. Lack of total integration of school faculty when these plans are finalized. "One hand does one thing and the other hand does another." Themes Addressed: Improve the quality and availability of services within the educational systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Mariah Hahn, Rensselaer Polytechnic Institute	I have already commented on the lack of USEFUL available services for these children and adults. The inconsistent coverage of various therapies that these children need is shameful and a real problem. Respite services for the family and the need for coverage for at-home care services for children with severe autism is needed. For instance, most children with severe autism cannot be placed in daycare. However, most families cannot afford a nanny for their child. As a result, one of the parents usually has to stay at home, meaning that they cannot earn money to pay for all the therapies these children need that are currently not covered. 4) Policy issues - it is important that policy makers begin to see autism with compassion and understand that it is not a solely genetic issue. It is also just ridiculous that the only therapy that has been shown to be effective in autism treatment (ABA therapy) is not covered by Medicaid (which is the only source of insurance for many children with autism). I can get play therapy, music therapy, and hippotherapy for my son through Medicaid (assuming I am blessed enough to find a provider), but I can't get the one therapy that might actually DO something for him. 5) Insurance companies currently find a thousand ways to avoid providing therapies for these children - the affordable care act has done nothing to ensure that ABA, OT, and speech services are available to these children and adults 6) I think law makers and the public need to be made more aware that we either pay for these children now (and possibly have them be able to function at some level) or we will be paying for 1-2% of our population to live in group living homes through Medicaid later. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Maranda, Houston Autism Resources & Support (HARS)	They are all important, but the "most" important I would say is service access and utilization and family well-being. Behavioral support is not there for many families, which means stress levels and dysfunction is experienced in the family ranks, which is spilling over to how the child is treated, managed, and affected. Without proper early intervention (EI), parents are experiencing significant amounts of stress and trauma-like symptoms which directly affect a child's behavior, which in turn increases parental stress. Service and utilization is the biggest need right now.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Anonymous	Education the public at large but also first responders specifically - police, fire and medical emergency workers - so they know how to quickly recognize and deal with people with autism safely.Themes Addressed: Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Heather Rocha	Family well being Safety Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Heather Baylies-Grigoreas	education family well being communtiy inclusionThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Howard Habler	Community services, safety and special education resourcesThemes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	there needs to be respite services for caregivers and there should be a higher wage for those hired to give respite. Household income and insurance should not drive what services the disabled child receives. I'm responding regarding ALL disabilities and not just autism. There needs to be more coverage for children therapies for disabilities. There should not be limits for children with deficits above 30% for example. This is related to occupational, physical, developmental, vision and speech therapies. educational disparities are an issue. the services we get is based on the district we live in. that's a big issue. there should be consistency.Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Holly	Having access to services that are needed. Programs for executive functioning skills, programs for social skills beyond the basics, programs for ADL for all levels of the spectrum not just one area. Allowing flexibility inn the program, and giving the parents a voice in the treatment. Continuing following these kids past age 5 (you can't get treatment from a developmental pediatrician past that age to determine what developmental age your child is) Educational practices that is not outdated, waste of time, and trying to shoe horn all kids into one mold. If you have a child who IQ is 58, tell me why they are being taught traditional school skills, if you have a kid with IQ of 126 why are they 5 years behind academically. I'll tell you way, because in the state of PA when a child has a IEP and the dx of ASD they take all the kids on the spectrum and find the middle and your child only has to hit the goals for the middle, no matter where they fall on the spectrum. That treatment procedures are outdated, and don't address the needs of the kids. An example is in PA there are no social skills groups to address the needs of HFA who get the basic skills, but cannot jump to the next level. There are no programs to help these kids get employed, because they are too high functioning to use a job coach. They are legally required to self advocate at the age of 14, and have to sign paperwork to have their parents advocate for them. They cannot go on CHIP because they carry a DX of ASD, but CHIP has over 3x's more services than Medicaid. All ASD kids are being lumped in as one, and they need different services and there is no flexibility in the services. And if a parent disagrees, they get crucified. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Irena Koshuk	The biggest gaps: Service systems; Safety issues affecting children and adults on the ASD; Family well-being Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Jennifer Skjod	If you have a child in middle school or older, there simply are not services other than special education --and many special education teacher are not trained in autism. Our public school actually told us they were not equipped to handle our child. The best they could offer was 2 hours of home instruction for him a day. TWO hours for a child that is already behind academically! Not only that, but one of us will have to quit our job to stay home with him --which will decrease our income greatly and therefore, we will be unable to pay for services he needs. Even a family that is NOT low income still struggles to pay for $300 a week in therapy (low estimate) plus all the other medical necessities. The largest policy issues we face are in regards to behavioral supports. Many states do not even have therapists licensed in these areas. If they do, the parents may have to drive 300 miles to see someone to give their child the help he/she needs. Parents often feel entirely inept in addressing the needs of a child with autism --especially if they do not fall within a qualifying income bracket. For instance, in our town of 70,000, there is only ONE behavioral therapist certified in ABA. The only way a child can be seen by this person, is if the family qualifies as low income. All the other parents with children who do not qualify --out of luck! NO other options at all! Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Janet Terrero	The public education system is the childs first community. Educate them to help autistic children with evidence based strategies and a lot of issues with society fall in line in a productive way. The education system now does not help them or the family....they hurt them. Fragmented services. Need more centers that have all autism services. OT, Speech, bio med doc, psychologist, psychiatrist etc. Collectively working together and communicating. Tremendous gaps in our public education system. We need to help the autism people get educated and be productive contributors to society. The public education system is horrible to them.Themes Addressed: Improve the quality and availability of services within the educational systems; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Anonymous	service: access, utililzation, efficacious and cost effective delivery, family well beingThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services
Anonymous	My child has elopement issues. Safety should be a topic priority. Services to get help with this is lacking. I had to have my house modified. It took 2 years to get approved. It's well known that autism and elopement issues can be deadly. The solutions were present but getting the funds and approval are not easy at all and waste a lot of time. Mental health insurance (Medicaid) does not cover elopement issues. We need a service dog. We need a higher fence. We need one on one care at home, in the community, and in school. These were not provided for. Infrastructure gaps include - having the parents income dictate whether a special needs child will have services. I am a single parent. In order to work and provide a home, I have to have someone watch my children at all times. This costs money. When DHS and SSI have income limits without taking into account the expenses to care for a child with special needs.There is a serious gap in coverage. At $10, that's $1600 a mo. After the cost to work, there are no other benefits like food stamps, that are covering the other costs of living. I have been denied benefits for making too much. I have had to quit a real good job just because I can't afford to work. No payments are made for a caretaker of the disabled. Why aren't any of the expenses taken into consideration? I have been penalized for having a high paying job. I am trying my hardest to provide and be a member of the working society but my own tax dollars that I am paying into the system doesn't do anything for me. The government denies my coverage for Medicaid and I need Medicaid to provide for a CLS worker so my family can function. I literally can't be in two places at once. My child is disabled with non verbal autism regardless of my income and needs help regardless of government issued income limits. Why does the government limit my ability to provide a better life for me and my children? The government has abandoned our needs yet still demands my tax dollars.Themes Addressed: Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Jenna Moser	Major - MAJOR - issues with timely access to evaluations and ABA services. I have had a diagnosis for my daughter for over 6 months with no access to in-home ABA services. I am an educated, professional woman and I phone autism service providers daily in search of services. Those more disadvantaged than me face even bigger obstacles to navigating the landscape. Medical providers place barriers to service in what seems like a system designed to put barriers up for ABA services. - Wait times at regional centers for evaluations are far too long - Access to in-home ABA services is extremely strained (no providers available) especially in rural areas. - School districts reluctant and discourage access to services. 1. Research into neurodiversityThemes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
Jenn Carerros, Mom of a child with autism	family well-being, educationThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems
Anonymous	Families of individuals with ASD's as well as educators, health practiotioners and all interested stake holders need to be provided with a list of resources in the community, state, and country that provide support and services for individuals with ASD's. Professional development opportunities, workshops, seminars, and conferences need to be provided to educate stakeholders about the prevalence of ASD's with our society, causes and risk of ASD's, and interventions and supports for individuals with ASD and their families. I believe there needs to be more services and support systems for individuals living with Autism Spectrum disorders in our communities and societies. Beginning with school-age children, there needs to be more funding and services provided to support early diagnosis of ASD, and positive support systems in place to improve their social, emotional and behavioral development within our schools and communities at large. Services and programs that increase social engagement for individuals with ASD's that appeal to their areas of strength and promote increased learning such as in the creative and visual arts, music, dance, theater and performing arts, technology, engineering and architecture, (to name a few) will be beneficial. Also services that will increase the adaptive skills of Individuals with ASD and increase their employment opportunities to be productive members in our society are desperately needed. I believe that grants and funds should be provided to local educational Agencies (LEA's), non-profit organizations and companies to provide services and treatment for individuals with ASD. More State and federal funds for LEA's, non profit organizations and businesses that provide behavioral, educational and complementary interventions involving technology for individuals with ASD's should be provided to support their efforts to address the needs of individuals with ASD's.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Jenny Nash	Access to ABA therapy from an early time. Education of the familyThemes Addressed: Access to early intervention services is a priority; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Jill Longenecker	service access and utilization, health and safety issues family well-being educationThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Jennifer Warren	Please help families to have the power to make decisions based on their own needs in regards to choosing the most effective therapy for their child or adult with autism. Schools and programs differ drastically. What one considers best may be the worst for another individual. The lower functioning individual may not thrive in an inclusion setting but is usually forced there by current trends. Lower functioning and high behavioral needs individuals are losing most all of what they need, especially once they become adults. These individuals may not be able to work at all. This is seen as failure by our current system. They may not be safe in a totally included setting in the community once they become adults. They and their families often want them to live at home as long as possible but they simply cannot afford to do that without assistance. 24 hour supervision is a must for safety. Please consider that many middle income parents simply cannot afford much of the technology that is currently available. Any assistance would be appreciated. For families who have been on waiting lists for any services at all for many years no help is available. Most of the newer technology has been tailored to higher functioning autism. The majority of people with autism also have developmental disabilities. Many do not read or write. They are being ignored.Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	Lack of funding and access to treatments. For those families which earn enough money that they do not qualify for medicaid, many services simply are not available. In Iowa the waiver waitlists are years long, which delays access to treatments that could improve a child's outcome. Treatment and services need to be accessible regardless of a family's income. Further it is not uncommon for children with ASD to suffer depression and even become suicidal without proper supports. This can then lead to the need for a bed in a children's locked psych ward, which are in precious short supply. Being turned away because there are no beds available only leads to a worsening of symptoms and more desperate need for treatment. It is a sad state when a nurse reassures a parent that they see children being turned away for beds, and no beds available in the entire state, all the time.Themes Addressed: Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Jacque Ruch, Easter Seals and Private Practice Provider	Shortages include: Special needs dentistry, OT, PT, SLP, psychiatry, BCBA, in home behavior supports, respite care, residential placements, adult programming, job training, job coaches, supported employment, family support, in home behavior support, training for gen ed teachers and public school staff, training for first responders, and therapists trained to treat those wtih ASD. There are waiting lists in our areas for ALL of those services. Our community health center does not provide services for people with Autism. Therefore almost all children with the medical card with an autism diagnosis in our area, do not receive services. The governor zero'd out the Autism Program Service center which provided free diagnostic services, so no there are NONE in a city of 200,000. There is a critical shortage of behavioral health hospital beds ESPECIALLY for adults. We have had adult student stay in the ER for 7 - 10 days, never get a bed and are discharged. Continued research of evidence based practices, to ensure what we are doing is the most effective strategy. People with ASD and mental illness have an extremely difficult time obtaining services. Also, those with higher functioning levels often can not access supports until they are at crisis level. The greatest factor is lack of funding, and insurance provider's ability to choose not to pay for certain services, based on an ASD diagnosis. The highest level of risk is due to lack of services available directly related to a lack of funding. Service coordinators are key when supporting families with ASD. In northern Illinois, we have 1 family support worker for 4 counties. The rest were cut, due to funding. It is difficult for families to know what is best practice and what is evidence based. They are often taken advantage of by people offering a magical cure. Physicians, especially psychiatrists and behavioral health services are EXTREMELY difficult to find.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years	Family systems are an area that needs attention. Many families struggle - many go thru divorce - many parents need respite, education, training...... Services: OT PT S/L always have been very helpful to me as a teacher. I have concerns that students do not receive as many services as they could - there are always shortages, it seems, in these fields. Doctors do not seem to have the specialized knowledge, especially in the smaller towns in our state, that is needed to help parents and children who,have ASD. I have concerns that ABA services have sprung up too quickly - and that only some of them provide high quality services. Other companies, I feel, have simply jumped on the bandwagon to make a quick buck in a field where $is available. Teachers are providing inclusion services - in many instances - and I feel this is an excellent thing. Their services however, are being stretched too thin. A teacher may go into a six grade classroom - where she may provide service for two students on the spectrum, a student who has ED, a student who has a mild cognitive disability (IQ 75 for example, and three students who have SLD of varying types. They each are to receive language arts inclusion for one hour, but in that on hour, it is impossible to meet all of their needs - particularly if one of the students who,has higher needs (ED or ASD for example) is having a rough day.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Need for an adequately trained and compensated workforce to improve available services and service delivery
Karen Zastrow, Parent	Internet; autism speaks. When my son was diagnosed I searched and searched for treatment options. I discovered ABA therapy, Speech, OT, PT and Early On at my local ISD. However at the pediatricians office there should be direction as to what services are available for autism care. You basically need to search out treatment and services yourself. Process need to be streamlined. Local support groups have been helpful; but difficult to find. I spoke about cost and the barriers that exist for working families. I was told to quit my job and divorce my husband and then I would get my services paid for. Unfortunately this is true. However this was not my personal values; by working I help so many others but there was no help for my son. This needs to be corrected. There are so many resources for autism however pediatricians are not aware of how to treat. Early intervention is key; based on research. ABA therapy is best practice however it is not affordable to individuals that work. My experience is that I live in the state of Michigan and legislation was passed in 2012 for ABA therapy however the loop hole is that self funded insurance plans were able to opt out of autism rider. I am a full time RN as is my husband; we help people every day; no was was there to help us. We paid in excess of $800 per week; yes per week for services for my son: ABA, Speech, PT, OT, Music therapy. We made to much money to qualify and our employers were self funded insurance companies and opted out of autism rider because the legislation allowed this. The local Intermediate School District (ISD) does not support ABA therapy because they do not have the funds to provide ABA therapy - which is evidenced based practice for kids on the autism spectrum. We need legislation that all ISD programs offer ABA therapy to improve the outcomes of autistic children. Need audio/video portable devices so autistic children can be monitored as needed. Need a tracking device for those that wander so they can be located. Police and rescue need to be educated on autistic signs and symptoms so they don't assume they are dealing with an individual that is not following their demands - they identify they are autistic.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	community inclusion, family well-being, service access & utilization, education, Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	Greater respite needs 2b available, services need to be improved: in NJ received greater number of and better services, public and private, than nephew in Michigan. Who knows if that accounts for their difference in functionality now, or not. I had more public services and could pay additionally privately to double services my kid was getting, while nephew had little to none publicly and zero privately due to his lack of family income. Especially true from 0-3 yrs, somewhat true 3-5 yrs. Now at 11 he gets more services in school, but maybe he'd be more functional today if had same services as my kid at start of life. No one knows. Stress on the family is extreme. To say that it has permanently altered family life even among extended family, or that it affects social relationships with other families and children is also understated. My affected kid has an unaffected twin. The unaffected twin is offered birthday parties and playdates, while affected twin is not as often. I mainstream my affected twin as much as is possible in camps, extracurriculars, school, etc. Imagine how I felt when a special needs teacher/mom also with 11 year old twins (B/G) asked if my unaffected girl twin could play over the summer with her girl twin. The fact that special needs teacher/mom, of all people, made no reference to my affected girl twin for a playdate was truly heartbreaking, even if not all in same class. Clearly more research is still needed and research reports need to be widely available to the public. Public Service messages about autism, inclusion, and anti-bullying are still very important also. The public needs better understanding and inclusion, teachers need better preparedness, students with ASDs need more assistance/accommodations, therapists need to be better able show quantitatively the positive differences with treatment.Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Dwayne Kitis, Parent of Child on Autism Spectrum	Significant gaps and education exist in rural regions of the states. Even in small states with a significant financial standing parents must travel 3 hours for diagnostic and specialized services for children. Public Jurisdictional educational oversite bodies continually provide substandard or "just enough" services to meet state and federal guidelines. There is not enough services and diagnostic interventions in these underserved areas. Mental and emotional services for families who raise children on the Autism spectrum are non-existent in rural regions.Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems
kathleen Madigan, NBCT ECGEN 2nd grade teacher, grandmother of an autistic boy	Outreach to families and schools. Perhaps Early Childhood Programs could be the conduit to the many layers of other services instead of each group being a new hurdle for the family. These families are stretched thin already, having to keep reaching out to new waiting lists and paperwork is daunting. Schools need help to update their services. Reaching out to State school systems, doctors and other providers to get this information and training out. Perhaps more grants for college students who are training to become teachers or other therapists. We have a real shortage of these in the trenches. Also perhaps grants for school districts to up their therapist or teacher ratio ( that can't be used for administration in an equation instead of a real ratio.) Outreach to families and schools. Perhaps Early Childhood Programs could be the conduit to the many layers of other services instead of each group being a new hurdle for the family. These families are stretched thin already, having to keep reaching out to new waiting lists and paperwork is daunting. Schools need help to update their services. If the systems collaborate- than this streamlines it for the families and school systems which are already overwhelmed.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Anonymous	The priority should be cost effective therapy for the children and their families, maybe they can organize some activities that are healthy and safe for all of the children.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery
Anonymous	We desperately need service access and utilization, services systems, efficacious and cost-effective service delivery, health and safety issues for girls/women and community inclusions. ASD females are often victims of sexual assault and bullying. These issues MUST be addressed. Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	There isn't a lot of options near me. I would have to drive over an hour to get more help. The behavioral pediatrician doesn't suggest services. I usually find out about services online. The services I would like to get for my child are not fully covered by insurance or aren't covered at all. Certain supports that would help my child are too expensive for me to purchase on my own. The only support I get for IEP meetings is an employee of the board of education. My community doesn't seem very inclusive of children with autism. If Medicaid covered more testing and services, I would know more about why my child has autism. Medicaid also limits Occupational Therapy to 20 sessions a year. My child's therapist has given up trying to get more than that. Medicaid doesn't cover ABA. Educators need more training regarding autism. One of the reasons I decided to send my child 5 elementary schools away from me to a self-contained autism classroom is because the Autism Itinerant didn't seem very knowledgeable.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	I'm not sure if this is included, but the connection between early intervention services and school-based services, especially when different criteria are used, as well as education looking at preventing academic failure before addressing via an IEP. Include teacher preparation and leadership professional development to have a full understanding of policies, procedures, and pedagogies which assist or block students with autism from maximally being involved in the curriculum and other areas of academic achievement.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	In northeast CT we have few services for our ASD children, we have to travel to cities to find expert care. Insurances should be required to cover 100% of services. We have to wait weeks if not months for drs. Parents need free programs teaching them how to respond to their ASD child.Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Leslie Zevnik	Both Service systems and community inclusion!Themes Addressed: Improve the service systems and service models; Need for better services to foster community inclusion of those with ASD
LeTreese Jones, The A.F.F.E.C.T Institute	Service access is a documented challenge. Families which do not reside in metropolitan areas, are often forced to drive hours for services or go without. Funds should be redirected to community training (i.e. faith-based organizations and civic organizations). Also, for those families within metro areas; the services should be centrally located and accessible from public transportation. Finally, incorporating cost-effective service delivery, while utilizing community stakeholders, should be a priority. Ex. Use schools during summer for service providers. The greatest priority should be to address the gaps in services and policy based on ethnicity. It is widely held that minorities are diagnosed later and not afforded the same services due to financial challenges, disparities in insurance and access to services. The biggest challenge for treatment/interventions is cost. Specifically, the priority should focus on determining how the cost of Intensive Behavior Intervention (IBI) can better accommodate the middle and lower class families that desperately need the services. Additionally, from a policy perspective; who oversees the providers of these services? How are the services regulated? The priority, along with the funds, needs to shift from research to services.Themes Addressed: Disparities in access to services should be addressed; Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusionThe cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	When it comes to services I find these to be the biggest issues: -People fall into income gaps where they have insurance, but can't afford the co-pays for therapies: they make too much for government assistance, but not enough to pay a co-pay for every ABA session needed. -Regional services use different criteria or modes of understanding autism than clinical professionals. For example, Regional Center doesn't consider a condition life-long until after a child is 3-years-old, but autism is a pervasive developmental disorder that doesn't go away, even if the symptoms are lessened or seemingly go away with therapy. This system punishes families for getting early diagnosis and treatment by potentially denying them access to services such as respite care. -We need more support for family, community organizations. Some areas have a great deal of family resources for support and community outings, other areas have nothing. These community organizations are a ground-level approach to advocating for inclusion and supporting families emotionally, educationally, etc.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Lisa Nesbitt, Disability Rights North Carolina	Medicaid's EPSDT benefit can be used by Medicaid eligible children to access autism-related services. The biggest gap in services is that too many states are ignoring their legal obligation under federal law to provide autism-related services to Medicaid eligible children (kids under the age of 21). In July, 2014, the Centers for Medicare and Medicaid Services (CMS) issued guidance clarifying its position on Medicaid coverage of services to children with Autism Spectrum Disorder (ASD), including autistic disorder, pervasive developmental disorder not otherwise specified, and Asperger's Syndrome. All states must cover therapies that treat ASD for Medicaid eligible children under 21, even if the services are not covered for adults under the State Medicaid Plan as long as the services are medically necessary. CMS's bulletin can be accessed at: https://www.medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-07-07-14.pdf Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Lisa Geng, Cherab Foundation	Too many parents of children with communication impairments have to struggle with the school and their insurance company for appropriate therapy. There are a number of places to go for help though. Early Intervention birth to three, and then three and up through the town school with an IEP. Insurance coverage. A university near you that has a speech and language department typically provides evaluations and therapy for nominal costs by graduate students overseen by the PhD that runs the department. Sometimes children can be sponsored by a local ELKs as my son was. I have a page here with various ways to get therapies http://pursuitofresearch.org/2016/05/31/5-ways-to-get-free-or-affordable-speech-therapy/ To help with insurance http://pursuitofresearch.org/2012/07/10/insurance-coverage-tips-for-speech-and-other-special-needs-therapies/ To help with school advocacy you can contact your state Parent Training and Information Centers http://www.parentcenterhub.org/find-your-center/ and your state Protection and Advocacy Organizations http://www.ndrn.org/ndrn-member-agencies.html. Of course much depends on the diagnosis and severity. But we need to get rid of the stigma that comes with a communication impairment as we did for the deaf years ago. New appropriate cognitive and receptive testing need to be developed for communication impairments. I witnessed my son with apraxia given a verbal based IQ test while his communication impairment was severe. His ability was judged on his disability which is a violation of his civil rights. I was told he "wouldn't make it" in a mainstream kindergarten class and needed to be schooled in a self-contained learning disabled placement. I advocated against that and he was mainstreamed and did well K through 12 where he was in honors classes in HS. This is my son's story http://differentbrains.com/letter-son-diagnosed-apraxia/ [Minor/Dependent Name Redacted]'s goal is to be a special education attorney so he can help other children like himself in the future. Most with a communication impairment have average to above average intelligence, but either due to misdiagnosis, or without appropriate treatment, they can be dependent on others for life. Give these children the benefit of the doubt when possible. Protection is another area of concern, there can be increased donations of GPS systems to families who deal with nonverbal children who run off in stores or have escaped from schools or homes. Cameras in the classrooms for special needs children to assure children are not being abused. I'm executive director for Late Talker, Silent Voices which advocates for protection and acceptance of these children and offers state-of-the-art resources and research to families looking for solutions. We completed our first documentary. You can see a teaser here http://www.latetalkersfilm.com We are hoping our project will raise awareness through numerous parent and professional documentaries by award-winning documentarian Lise Zumwalt, Themes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Loreen Booker Brown, Career Veteran in the field o ASD, AND DD populations	All of the things mentioned above are needed. I would specifically address the concern of police training. Also educators and school administrators need greater training about ASD and DD populations. Too often individuals are victims of bullying and failure of the resource officer and school administration to focus on incidents that happen with our population. The outcomes of the lack of concern results in more victimization by professional and no validation of protection from perpetrators in the school house. Reducing the gaps in research i.e. behavior intervention and parent training's outside of the school systems purse. Would go along way in supports that provide correct information about parents and students rights to a quality and equal education. Many exceptional education both low functioning and high functioning suffer from lack of resources and administrative after thought of their needs. Parents are overwhelmed by day to day challenges and have lost hope for positive resolutions for their students. Another major area of deficit is Special Olympics, and socialization opportunities during school hours and after-school has been drastically cut over the last three years as well. The school system are responsible for 18 academic school years. Much more could be accomplished with professional and knowledgeable watchdogs who also provide professional expertise... Create grants so that parents can receive real and honest training on IEP, SSP and ISP.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Community inclusion Family well being. Empowering school clinicians to better advocate for children on the spectrumThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
Lucia Rafala, Parent Of child with ASD	a free and appropriate education that truly deals with all sensory and social language issues for students with high functioning ASD. As I see it, if my son doesn't bang his head and throw things then the school doesn't think he needs services. They don't acknowledge that high functioning ASD has issues with higher order thinking, social language, collaborating, etc, all necessary for Common Core curriculum. Educational: schools do not have a clear understanding of aSD and do not listen to parents or outside services that we provide as resources. Every PPT is a fight with lawyers to justify a tiny bit of service. You can't get OT, sensory integration therapy, etc. for high functioning ASD. I can't even get the proper speech and language service to deal with social language and social stories. They just do articulation when they see my son. if they show up for his therapy. monitoring supports to be put in place for families to ease the stress of future planning.Themes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems
Anonymous	community inclusion, law enforcement interaction with our young aspergers, transportation for those unable to drive, modern, safe apartments, for them when the parents are deceased, employment not affecting their SSI income.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Kathy	I believe if the community understands autism better and accepts it, that will help. These questions are so hard because I expected a multiple choice and feel that I'd need to take a lot of time figuring this all out to respond best. And I don't know how much the general public knows about policy issues. I'm in a volunteer group just learning about policy and I have miles to go to get a grip on how all this works. Medicaid and SSI, special needs trusts, why restraints can't be used when they would be a safer option - for example, I've heard that if a child in a group home runs into a street and their care provider grabs them to prevent them getting hit by a car, then the group home gets cited. I don't like restraints, but sometimes my son gets so out of hand that it is safer to restrain him than to allow him to continue coming after others, or even self-inuring himself. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Sally Kirk	My concern is schools failure to implement what is known to work. I am concerned with the availability of behavioral interventions to families, delays in commencing treatment. I am concerned that we already know a lot about how to help, but schools resist doing these things. I deal with school administrators daily who play gatekeeper very successfully, at the expense of children's futures.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Marty	1. Lack of access to obtain a diagnosis. 2. Lack of one doctor to oversee the treatment and managment of ASD. 3. Some places will not cover or treat induviduals with more than one diagnosis such as ADHD and ASD. 4. Tips for preventing wandering. 5. Low cost or free pool/pond safety for all kids with ASD that wander. 6. Lack of social and community group for nonverbal ASD 7. Lack of family support. The ones without extended family around are overhwhelmed. 8. Lack of caregivers for respite, parent to do errand, parent to do things with other children. 9. Lack of sibling supports. 10. Lack of planning for when the population that cannot live on their own, hold down a full time job, etc. There is going to an influx of people in this catagory.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	This area would be my priority. What curriculum and supports are there to homeschoolers. Is there a directory of teachers that would help me set up a curriculum for my five year old granddaughter. I am a teacher librarian and have found great help from the local homeschool group and a retired special education teacher. What training is there for me and the community at large that would take away reluctance for children to play with special needs peers?Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Melissa Sigel	In Arkansas services can be hard to come by - particularly if you are over the age of 6 and do not come from a wealthy family. There are few service providers, and there are a myriad of barriers to getting the few services that do exist. That includes: poor communication about what is available, the fact that these services tend only to be available in a couple of concentrated areas across the state - meaning a long drive for the bulk of the residents in the sate, lack of training for public school teachers about what Autism is and how to help support these children, the high cost of private schools that claim to work effectively with children with ASD, among other things. 2. At this point Medicaid in Arkansas will not cover mental health services for any child with autism - even if that person has a co-morbid diagnosis such as anxiety or depression. This results in children who desperately need mental health services being unable to get them. Children with ASD are more likely to elope. There is technology available to monitor your child and keep track of their location - so if they do elope they can be easily located. This is something that insurance should cover. Many in the field of Behavior Analysis are beginning to make great use of technology - particularly with older children and young adults. This is helpful for communication purposes, being able to receive support from someone who cannot be in the same physical location, creating job aids to help with completion of daily tasks and so forth. Additionally, everyone has these items (iPhones, tablets, etc.), so it is not stigmatizing.Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Michael Brackett, Easter Seals	Service systems, education, and family well-being.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Improve the service systems and service models
Anonymous	Community inclusion Safety issues I would say family well being, but you've already proved you should be staying far away from something like this because of the negative messages you have provided to families in the pastThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	Funding and education for providers to provide all of the above for families and persons with needs. There are services and pediatricians and doctors must be involved to ensure caregivers know where to receive services and supports. School systems must have ample/adequate staff to meet the needs of students with disabilities. Currently there isn't medication for ASD but only for co-morbidities. ... Tweaking the role of case managers can be a huge new field and help the parents to access all of the resources and supports available for children and family members with special needs.Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Melissa Friesl, parent	I think there needs to be more services more readily available. Cost is definitely an issue. Hopefully, insurance can cover more of these services.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	Education: more options for kids on the spectrum. Teachers are overwhelmed and piecing together options for our kids on the fly. Family well-being: better access to affordable respite programs. We have never been able to hire a baby sitter for our child. Respite weekends in our area cost hundreds of dollars per day. Access to Medicaid includes a wait on a multi-year wait list. Parents are forced to choose between working or being home with their child when they are out of school at 2:15 because there are no after school programs to support our kids. Health and Safety issues: Educate first responders about ASD. One of our families greatest fears and is being incapacitated in some way (traffic accident, etc.) and our son being left to fend for himself until someone who knows him arrives. He has limited verbal abilities and may run, hit, or scream when scared. Chances are this will not end well for a child who looks much older than he is because of his size.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	Family well-being, efficacious and cost-effective service delivery, community inclusionThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Need for better services to foster community inclusion of those with ASD
Marilyn Arons, Melody Arons Center of Applied Preschool Research & Education	Provision of services has become a highly political issue due to cost. ABA is inappropriate for treatment of SPD and state governments and those with federal funding are limited in what they do and say if they are to maintain their funding. Very few professionals and clinicians involved with autism have neuroscience training/understanding and often give parents misinformation through no fault of their own. The science community must have a greater say in decision making and the recommendation for services.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Need for an adequately trained and compensated workforce to improve available services and service delivery
Jennifer Furlow, Autism Mom-Warrior	Family well being is a huge problem and no one has time for support groups. A 24 hour phone help line would help. And family well-being check-in phone calls at regular intervals would help. There is a HUGE gap for services in rural areas. Northern New Mexico lost all services (except for wheel chair children and violent children) a few years ago because the local administrators stole money from the program. (they should be jailed.) Easter Seals took over but it took almost a full year for them to sign a contract. Meanwhile...90 % of our therapists, BMS workers, counselors, etc...moved to different parts of the country. These staff members were given brief unemployment benefits but it should have lasted until Easter Seals took over. When Easter Seals took over...they only offer about 10% of the original services and families here are too poor to move away in search of help.......there should be a Federal Fund to retain our services and staff until a replacement organization takes over and issues their 1st pay checks.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Anonymous	Service access and utilization, community inclusion Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Michele Thompson, Nebo School District	ABA-based services should not be reserved for only those who have adequate insurance or unlimited funds. Families who have children born to them with developmental disabilities should be able to access the most accurate information and timely service delivery. Early and effective interventions and services can improve lives as well as reduce overall costs. Community education is also lacking. In order to include all members of society in our communities, we need fewer barriers to employment and independent living as children with ASD grow into adulthood.Themes Addressed: Access to early intervention services is a priority; The broader community needs to be better educated about ASD, to lead to better understanding and inclusionThe cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Michele Tryon , Healthcare provider	Family well-being. Support programs and parent education are critically important. Service access is also important, as programs are developed families need to be able to use those services. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Mindy James	This isn't just about knowing services exist, because the services do not exist. If they do exist the are so underfunded that the vast majority of families that need them are turned down, or have to pay out of pocket. As a parent you grab what you can get and hope something works. However you have to find it. Even mental health hospitals will not take an ASD child in a mental health crisis specifically because they are diagnosed ASD. Specifically children previously diagnosed as Aspergers are being denied services even after receiving a new diagnosis of ASD because they are too high functioning, despite significantly imparing issues. There needs to be more research on adaptation of children and adults into their environment. There needs to be more education to teachers specifically. Also to college staff, therapists, nurses, and even parents. With the high prevalence of ASD it is baffling how little the people tasked with interacting with ASD individuals know. In addition there needs to be community plans for children who run, or who are aggressive.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
Anonymous	Service access and utilization, education, health and safety issues affecting children with ASD. Throughout the US, there is a severe lack of services for ASD children. Because treatment is not a billable service, providers are few. Door locks for families would save lives. Schools are not required to adapt their plan for these children. We need specific educational plans for children with ASD, so schools are required to provide specific tailored educational opportunities.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Minerva Adame	Have a place, whether in person, or better yet online, where inquiring minds can go to access any and all information regarding Autism services and resources. Make a section on the website where someone can input their zip code/location and find local services. :) Provide parents, individuals, teachers, doctors, therapist, police personnel(anyone who interacts with individuals with Autism) with information on what Autism is and how they can best help an individual with Autism.Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Missy Wilson, Easterseals	education family well-being safety issues affecting childrenThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Brynda, Parent of an autistic child	Community inclusion. Family well being, families need support from the community not ridicule when we. For policy, medical insurance needs to address all needs. Also school policy has not caught up with research. We need to force consistent service but it needs to be combined with anti bullying. Autistic should be a protected class by ADA. Also ways to make these kids feel included, so they don't become lone wolves.. Education and community acceptance.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Toni Silveira, mother & educator	Social skills classes are so important. There needs to be more funding for school/teacher training and professional development. ASD education is not just special education as our students can be mainstreamed and can take every class offered. High functioning kids tend to be exited off their IEP's too early and parents have to constantly fight to keep their IEP when kids show success... The behaviors are baffling at times and parents and teachers need strategies to help children, teens and adults to better understand these challenges. Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Monica, Monica L. Kounter	The cost and availability of services, especially those deemed "alternative" needs to be changed so that one never has to walk away from a therapy that is working due to cost and availability of a provider. Dissemination of information overall needs to improve. As parents, we find out about services through "word of mouth", i.e. other parents. We need a national database, divided into regions, states and major cities. This database should include all therapies and services, including alternative, providers, insurances taken (including Medicaid). It should also include funding sources. Parents spend hours on the internet researching and looking for therapies. It is like having a second full time job. There is no consistency in terms of what you find, some of it is outdated, and unless you know what you are looking for in terms of terminology, you may not find what you need. We should be working collaboratively so that everyone has the same access to all information needed to insure the best outcome for each child on the spectrum. I run a Special Needs Support Group for Homeschoolers, and the lack of information/misinformation is a real problem.Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Christine Reel Brander	the service system in NY State is back-logged and difficult to navigate. There are waiting lists and /or a lack of services and supports and the availability varies by region. It is difficult to access services and supports outside of your immediate service borough. their is an overall lack of accountability for meeting deadlines and basic requirements for processing requests and answering concerns. Support services for people with co-morbid mental health diagnoses Appropriate medical and Nursing services to support people living in the communityThemes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Michael Waddell, Saint Mary's College of Notre Dame, IN	Family well-being is the key, as a strong and supportive family is better able to effect the flourishing of an autistic person than any other institution. That being said, individuals on the spectrum should also have access to services that support full inclusion in the community, including especially schools and workplaces. So, 1) family well-being, 2) community inclusion, in 2.1) schools and 2.2) workplace. 3) The area in which there is greatest need---and in which there is greatest room for making a real impact---is in providing a wider range of services, both therapeutic and supportive, to individuals on the spectrum and their families. There is a growing body of evidence supporting non-behavioralist therapeutic interventions, and it is time for the government, in keeping with scientific and clinical advances on these areas, to begin supporting a wider range of interventions. ...and accessing services for people on the spectrum, especially women.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Marty Weiner	Services are expensive. Based on my own recent experience, states and localities do not have the dollars to provide fair services to all who qualify. This should become uniform across states, and within states. So I definitely advocate for national policies and support. But, one size does not fit all, so these needs need to be addressed as well. Themes Addressed: Disparities in access to services should be addressed; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Mary Komperda, Parent	When my son was first diagnosed, I did not have really anyone to turn to for help. I pieced together therapies. I would love to have more cost effective (insurance pay for services). Our insurance only covers 50% of our psychologist, which is vital to our family and my son. but this is so expensive. I have my son do OT and then we have periods we don't. Trying to find social programs and tutoring help, advocates because the school system bullies parents, this is son difficult. The trauma of IEP meetings just lingers and is so harmful in our community. The school system needs to change their attitude and the way they do business. But they don't have to, you are stuck with public school unless you can afford private. The school does nothing to understand and actually is insulted when you offer advise as a parent. behavioral management is difficult when the school is not on board with the diagnosis. Because it such a spectrum and so difficult to understand, your child flounders most of the school years waiting for change! Kids need to be included and the schools need to step up to community schools and help teach our children in a civilized manner that includes all children in the class room. Helping parents with behavior and education is high priority.Themes Addressed: Improve the quality and availability of services within the educational systems; Parents/caregivers need assistance navigating complicated service systems
Nichole	Medical homes it the place to begin. Every pediatrican/general care facility should have medical home philosophy. All services report back to pedi/gp and the team approach to care is developed as any other individualized service plan is. Parents chose who is on the team, teachers, counselors, pastors, psychologists, etc. should attend meetings regarding the care of the ASD child.Every community/town/city should have autism chapters and support groups along with teachings/trainings open to everyone. This coincides with teachers required to have ASD certificates. Public Safety Division should require all employees to attend trainings for safe handling of ASD children and adults. When the community works together to protect families, the communities are stronger. Stronger communities raise the standard of living and increase the level of joy.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	Community inclusion , education for teachers,admin, parents and community are the largest gaps. Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Michael Ridgway	Again all services are important to the child and the parents. And the community needs to be informed of all updated on services to be ready for the parents of special needs children.Themes Addressed: The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
ODESSA	What service are out there for family. The costs, health issues. Just where to go for help.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Parents/caregivers need assistance navigating complicated service systems
Parvati	In many states, there are such long waitlists for state provided services that these may as well not exist. there needs to be more direct funding (not funding for research) for respite care, ABA and family servicesThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Anonymous	education, family well-being, community inclusionThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Anonymous	There is an incredible amount of waste in the current delivery system. Human services organizations have created fiefdoms that exclude less expensive or creative service options (ie recent news on [Organization Name Redacted] in Colorado). It is considered acceptable to simply put children with complex needs on a waiting list for years, even as other children have excess and unused services. There is no incentive for the Human Services organizations or state governments to change the policies. Though there are scant funds for waivers or hands-on support there is an abundance of administrators to tell you about the shortages. Autistic children and their families are forced to use agencies and an infrastructure that does not add value and is wasteful. Less administration and regulation and more one-to-one support is what is needed. Service should be provided based on the behaviors/needs of a given individual rather than a diagnosis that may or may not be correct. Some children are delayed from services or never receive services simply because the diagnosis is uncertain.Themes Addressed: Improve the service systems and service models; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Robert Daniels, Children's Clinic, LLC	Efficacious and cost-effective service delivery and community inclusionThemes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Need for better services to foster community inclusion of those with ASD
Robin Drury	Definite need for more community inclusion. School districts needs to work effectively with government programs and inform parents of what is available to them. Interventions that are covered by insurance need to be expanded...sensory issue (chiropractic, yoga, swimming, music therapies, etc.). Other interventions such as DIR and RDI also need to be covered as well. There is more out there besides ABA that has a positive effect on quality of life ....Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Renee Portnell	All of these are important if there are no services for the family then they can't help their child, know what services to access ( not all state or non profit business will tell families whats out there). cost can be hard on families insurances don't want to deal with a life long disablities, communities are the same " we don't want them" have you seen a diabled park in the community or many of them. Heck no! Health for our kids great until age 26 they are on our insurance then medicaid. No regular dentist visit until its so bad all teeth are needing to be pulled. Not same doctor to see each time, My child can't handle changes in doctors, she needs consistancy.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
David Altieri, Georgetown University	Safety issues fir children! Appled Behavior Analysis is abuse! Lusten to ys autistics! See: https://rewardandconsent.blogspot.com/2016/03/why-applied-behavior-analysis-aba-is.html Social validity! Get the feedback from us actual autistics on how we actually feel about Applied Behavior Analysis punitive and artificial praise cinsequences. You should see we hate it! Ask us what we want! The UN said autistics are the number one experts on autism! This is common sense Golden Rule of Ethics logic! Filpped: Do not do to others what you don not want done unto you! Do you want skin shock on your buttocks? See: http://www.forgetthelabel.com/2016/05/a-shockingly-rotten-way-to-treat-humans.htmlThemes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Robin Weisman	Where to start. Current services systems - eg: most waiver provider agencies , were not design for people with ASD. Need specific training and certification to work with this population, especially adults. Services are not one-stop shop. As a person who services on the Autism Society's local board, on a special needs committee for a community center, and on our county's Disability Services Board, and with 2 adults with autism. I can tell you that understanding the services, linking them together, and obtaining what people need is an arduous process often calling on your own personal detective skills and tenacity. Most people are unable to navigate the existing system and often find things out by circumstance. A case manager should be assigned to every person who receives social security, waiver and other services to help people navigate the system.. This should start immediately upon when the child is indentified and can ebb and flow with the person as they age. Adults in the system should receive the same. Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Rhonda, parent of Asperger's child	Focus services with pre-natal education regarding the effects of cortisol to the fetus. Train educators from early-intervention up to identify different needs of Aspy kids. (Goal should be to develop talent areas, NOT conformity). Inclusion is also not a viable goal, as they don't really feel included anyway. Aspy kids don't multi-task. They aren't good at unstructured time, and won't "just figure it out." Train our educators. We need specialized teachers with specialized classrooms to help these kids excel. There is no reason they can't become the tradesmen, scientists, artists, or mathematicians of the next generation. If they don't finish school, they will often be considered unemployable, and many of them will be forced to apply for disability or become indigent. Help them be brilliant at what they were wired to do. Focus on our schools. Aspy (Asperger Syndrome) kids aren't hard to pick out, but are difficult to educate. Current educational reforms prevent Aspy kids from being successful, as they are wired to learn differently. Early experiences traumatize kids and increase depression and feelings of helplessness for families. Design programs that "fast track" them to learning where their skills are and then continue programs into adulthood. You will see reduced suicide and violence. Idle time to a brain that is wired to continuously organize or create, increases anxiety and other mental health problems. Social skills and areas that challenge these kids would be learned more successfully if they were addressed AROUND their strengths, instead of "despite their strengths." Research educational designs that are specific to these kids and they will show you how to improve them. My son would have been able to help you with educational design improvements by age 5. Many children are gifted in this area. Give them a voice as to what they need. Inclusion was never our request or goal (or his). We wanted our child to feel interested, challenged, and wanted. This was not his experience, nor that of many that live in our community. By 5 years old, he was talking about wanting to die as we forced him to wait for the school bus to go to kindergarden. I would prioritize education. These kids suffer in public school systems who are ill-equipped to address needs to reduce stimulation, increase structure, and help families identify the special talents and abilities that their child will need to develop and rely on to move forward in life. Once talents are identified, they need to be developed and organized into a system that will allow this child to some day be a useful part of society. Many of these individuals can work as skilled and dedicated employees, IF they can find the specific environment they require. Inclusion as a specific goal only makes things harder for these kids, as it adds one more challenge to an already large list of situations that they need to sort out. Social skills (and other challenging areas) could be taught like reading is now...included as part of many activities through out the day. Give them special classrooms where they can focus time on achieving where they were wired to excel. Give them the tools to excel. Well-intended educators spent a great deal of class time and energy (and discipline) trying to make my child conform. He could not and would not. He is not wired to conform. Unstructured time for classmates (to "relax") was torture for him. He was repeatedly singled out, sent out, and became know to every bully. He was rejected, depressed, and suicidal. He couldn't try harder. Redefine "success."Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Use social media to inform parents and educators about Autism and where to find early help. There is nothing available for teens in small towns. Everything is located in larger cities which are not practical to get the teen to. More effort should be put into using graduates who have studied in special needs. Create locations for teen activity and social skillsThemes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Pamela Blankenship, Parent/Grandparent of children with ASD	The creation, maintenance, and enhancement of "wrap-around" services are essential. Such services as respite care, sensory-friendly activities,family support, life-stage transitions are especially important. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Robyn Smith Tweedy, Mother of a 13 year old boy who has severe Autism and OCD	I have more than a lot to say on this issue but I will start with the fact that the PCA workers are so lowly paid that you don't get quality people. It goes without saying but I will say it for those who obviously set this program up so poorly without thinking about the employees which trickles down to adversely effecting the population you profess to want to help and the families you claim the services are there to help. People with special needs need more than just a warm body watching them and filling out ridiculous paperwork while they are supposed to be watching and helping these people. These special people need quality well educated and well trained and happily paid workers because the work is very very hard. Pay these people, people!!!!! We have never ever ever had a person good enough or appropriate enough for our son. EVER!! We just have to be nice and take whoever comes. Outrageous!!!!!! I have been dealing with this for over 21 years and more intensively and more recently with our now 5'5" 200lb 13 year old teenage son who has severe autism. It is so completely cruel that there isn't a place that once the child is newly diagnosed every one of us (every parent, guardian, caregiver, and even concerned involved friend who wants whats best for this child) its a shame we don't have a place we could ALL take effected child who will be life impaired (I've stopped saying all the subcategories like non verbal, relationally challenged etc because ALL of these kids no matter the varying degrees from lightly touched by this to all the way to severely impacted by this, ALL OF THEM, need immediate and COMPLETELY NO COST THAT'S FREE PEOPLE (and non-redtape-encumbered) personalized and appropriate services!!! This should be One place (depending upon the size of the need in that community obviously if the need is greater there should be more centrally located locations for this, but a one stop ship in every single community! that provides every possibly help for that child to have a better outcome and therefore a better future!!!!!!!!Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Robin Havens, parent of someone with autism	There is a huge drop off is service delivery, availability and quality of service providers when people with autism age out of the school system. More supports and choices need to be available to people with autism and their families in terms of activities, services and supports. Individuals with autism who have many behavior issues which prevent them from being left unattended are at risk for isolation from the community since they have more difficulty finding, training and keeping aides who can handle those behaviors in a community setting. Likewise, the families of those individuals are faced with the same isolation and inability to engage with the community because they must care for their loved one with autism segregated from the community if they cannot find adequate staff to help.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD
Anonymous	The community support is completely lacking. Family well-being is more than just respite care. It is parent and sibling training, grandparent training. Frequently, families who have children with ASD are alienated from their extended families due to the severity of their child's autism. More training, more awareness, more "how do you interact with a child on the spectrum" needs to be taught in families and communities. Service continuity is poor. Therapists leave frequently, and children have to go back on long waiting lists to receive therapy again.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	At this time the schools should be doing a better job on including special needs children in peer mentor programs. Most schools do not have this type of program in place. Once your child is no longer part of the public school system, services become very limited or none are available to them. Community inclusion is lacking as well. Programs are not in place (unless a parent starts one) for the ASD community to become locally involved. Job opportunities are very slim. Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Anonymous	Extended insurance coverage for therapies. Recognition of related conditions like sensory processing disorders as qualifying conditions for insurers and school districts. Comprehensive special education services for children with autism. Specialized education for children with autism for example smaller class sizes with specialized instruction while still allowing access to the path to common core/high school diploma rather than extended common core (high school certificate) like in North Carolina. A lot of the kids are very smart and are fully capable of graduating high school, they just need specialized instruction to access the curriculum instead of being held back.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Kimberly Matkin	More education and training for teachers,police, fire, ems rescuers. Better and more affordable services for families. Medicaid should cover everything related to autism.Themes Addressed: Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Teresa McCroskey, parent	Programs that would be helpful are programs for adults and children that helps them be able to go into the public and learn to shop for their personal needs. Like food, clothing, associate with others besides the care giver. They need someone to come into the school and help the child during the day with their work whether it is helping them with fine motor skills tasks like writing a paragraph for reading, or math homework, providing them with an IPad that is voice activated if needed. Program that may help a family well being would be helping the person learn to care for his or her own personal needs, like putting away his own clothes, learn to get his or own things together for a bath, or operate the washer or dryer, or to make simple things for lunch or breakfast. One program that I would love to see go into affect for all Autistics is that the government provide a tracking bracelet for the family to place on their loved one if they get lost, so that they have a way to track them with a chip from the bracelet. Also helping provide the teachers and parents that are just notified that a child has Autism with ideas no how to keep the child safe. Parents could use an Alarm system for their home, so if the child goes outside the alarm would go off. Community inclusion, the autistic individuals need to have some way to be able to have groups that they can go and be part of that are part of their community, not several counties over.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Kelly Walmsley	Not one item on your list exists for our family. We live in Central Illinois, so they are non-existent. If one of them were implemented, they would be so inundated with requests for services that they would need to set strict priorities and my son, who is high-functioning, would not be a top priority and he still would get no services. Pie in the sky fantasy. I don't know how to answer this, as my son has no access to specialists to address his comorbid conditions. We live in a medical wasteland where competent doctors are nearly impossible to find. I am sure he has some urological problems, as well as social and mental impairments, but I don't know how to get him consistent help. Schools put parents and students through [Profanity Redacted] with assessments, IEP meetings, calls, meetings, forms and then they moreboftenvthan not do not implement their own suggested accommodations. They put our children on a path toward alternate placements through consistent suspensions and punishments. Schools don't help special needs children. No faith in our education system whatsoever.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Julie Wheatley	All of these areas should be a priority. Many parents don't know what is available and don't know how to find out how to get services locally. Needed services are not available locally, or stretched too thin and you can't get in. Quality of services is poor. Service providers are not paid a decent wage, therefore, staff is inconsistent, poorly trained, low quality, and not invested in outcomes. Education, understanding, and demonstration of what it is like to have ASD (for example, what would it be like to take a high-stakes test while sitting on a tack, strobe lights going, a constant high-pitched noise, a noxious odor and sitting uncomfortably close to others) would help people to "get-it", possibly develop some empathy and make an effort at real community integration. The unified sports in high school is a good example of real integration.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
gabriele lawrence	Community inclusion to gain life skills, independence and pre vo-tech job skills, family well being as most of us are single moms, ensure that supplements are covered under insurance when doctor prescribesThemes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Xander McDonald, individual w/ autism, parent, sibling, advocate	We need services that cover everyone on the Spectrum, not just a small fraction of children. We need assistance in building autistic community, so we can help ourselves. Building community, increasing empowerment & self determination is what I see as the answer. If a family gets support early on and the individual has access to a community of their peers, that addresses the isolation that is so damaging. We learn social skills best among our own kind. As we grow older, those friends can become our supports, our future roommates, possible dating partners, job leads, business partners. Professionals are valuable but they don't replace a group of peers. We need to invest in building peer support and self determination.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Zoe Goodblanket, Grandparent	Access to therapy that is culturally sensitive is still a challenge. We are still utilizing programs for American Indians and Alaskan Natives and must travel to another city that has a large American Indian population. Working w local school district is challenging and frustrating. We wonder why our family should have to educate staff about ASD and our child's educational and social needs. More training and specialization for educators who work w ASD children.Themes Addressed: Disparities in access to services should be addressed; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anne Sawyer, Parent	Education, family well-being, health and safety issues, and community are most important and necessary. 3) School district curriculum and education for teachers regarding mainstreamed children with autism. 4) Improvement within the Pediatric community to assist and guide parents to the correct support and resource groups and organizations. 2) Education amongst professionals. Educators and health providers (not considered specialists) are a disservice due to lack of awareness.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Mom of Two	1) I think wrap-around intervention services that provide families with support, education, strategies, and access to providers could be most helpful. Physicians or schools could help families begin wrap-around at key points, e.g. diagnosis, the start of middle or high school transition, and transition to adult providers and services, or possibly when a family relocates to a new state. Learning curves are extremely steep at those junctures. State PTICs could be helpful, but in many states they're underfunded and spread too thinly. 2) But state programs that could help are often the first on the chopping block (Illinois--good grief!). Service delivery and access should be a federal priority and responsiblity--particularly because so many of those children will eventually access Medicaid and SS. 3) Let's overhaul the delivery of long-term care services, like personal care and employment supports.They shouldn't be tied to Medicaid. 4) Private insurances are often denying families coverage for autism treatment and therapies, but those families aren't eligible for Medicaid. Families are spending $$ out-of-pocket. 5) Rural access to care and services or inclusive education.Families are relocating or separating in order to find adequate services. (In some cases,families separate across state lines--maintaining two separate households.)Themes Addressed: Disparities in access to services should be addressed; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Andrew Gibbs	Gaps in service related to medicaid access, insurance coverage, mental health crisis care, "aging out," and job training should be key priorities for the IACC. The agencies' biggest priority should be expanding access to services. Medicaid coverage for children with autism should be universal, rather than based on a patchwork state waiver system that leaves millions uninsured and under-insured.Themes Addressed: Improve the service systems and service models; Increase the accessibility and utilization of services
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	Finding ways to control parents that don't properly care for there children no matter there age. Educating others effectively. Giving ASD credit where credit's due. Don't worship parents so openly if at all. And show society that Different makes their world better too. Not just buy letting people like Steve Jobs into it. But, also buy doing things like having less toxic chemicals in your household. Not wearing perfume. Ect. Require tapping classes for PARENTS and support people. If we need social communities created for us that there filled with people who are on OUR level with the same challenges or very similiar ones. Not an aspie with someone with Down Syndrome for example. Pay for testing like the full ALCATT testing options/Cyrex labs tests that are needed. MAKE Them Widely RESPECTED also. Caps are not screaming. There emphasizing through out. Like I said before. Cover Adult needs for aspies who may seem CURED to. But, need some help possibly. Don't baby us either. housing and expand Health care services like Mental Health. Contact me or better yet. Check out my 4 blogs. sensorysolutions1.com , disabilityadvocate1.com, http://whatisnon-toxic4us.sensorysolutions1.com/?p=690 http://onlineconferences4us.disabilityadvocate1.com/wp-login.php?redirect_to=http%3A%2F%2Fonlineconferences4us.disabilityadvocate1.com%2 Thanks for this opportunity to be heard! ASD is genetic and Environmental. But, you know that already. Don't you? Sure some of us can learn to live sometimes somewhat normal lives. But, that doesn't mean we are no longer on the spectrum. Or cured. You need to accept that proper behavior. And seaming normal or cured in your mind isn't the same thing as no longer needing support. We still are unique. And need ideally to be served as such. Which MUST include a shown RESPECT for how we could possibly contribute to the world. The best WE Can. Society needs to uniformly see us as individuals. And judge us only based off our own best. Not held to NT expectations. Sure. Some of us may meet or greatly exceed those expectations eventually- sometimes. But, that shouldn't always be your goals for us. I support therapies done buy properly trained Professionals who have the right mindsets. Although CBT can be fabulous for many of us who speak/communicate well. Counsler's and teachers in America mostly have little to no training in how folks with disabilities think differently. That's a MAJOR problem. that needs addressing provided enough psychologists or doctors of counsler's have enough interest in serving our populations. Feel free to contact me if you need to.Thanks for listening.Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	Exploration of the success of individualized flexible funding to meet the unique needs of a child/famliy. Coverage of alternative therapies such as horseback riding, RDI, Floortime Training for families. Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services
Anonymous	Health and safety issues are important, but they don't just affect children. Autistic adults need to stay healthy too, yet many doctors have no idea how to communicate with us. Educating healthcare providers in how to talk to autistic patients of all ages is very important. Improving education to be more autism-friendly matters a lot to me.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	I see my son socially handicapped. This is of great concern to me as I will not be around forever to help him. There needs to be more research AND programs to help an autistic child learn how to be more social. The only programs currently available are for those who are severely disabled. My son does not fall into the severely disabled category. He needs help, none the less. I have looked and looked into where he can get the help. The only help available is if I pour out ALOT more money I DON'T HAVE. The school systems like to promote pushing the parents to give their children drugs in order to ease the teacher's capacity in handling the often overloaded classroom sociology. I cannot tell you how many times I have been in the administrative offices in meetings with teachers and counselors pushing them to accept my putting my son through behavior modification therapy as oppose to putting him on drugs. My son does not have a violent bone in his body, he is just reclusive. When he gets overloaded, he shuts down, withdraws into himself. I had teachers who adored him and teachers who did not understand him. I am proud that I've been able to get him through the college process WITHOUT having to meet with teachers or counselors. I've pushed my son to do this on his own and it has not been easy. But he has been in college for 11 years and we have loans to pay once he graduates. THERE NEEDS TO BE MORE EDUCATION WITH THE SCHOOL SYSTEMS to help these children adapt and transition to the outside world.Themes Addressed: Improve the quality and availability of services within the educational systems; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Anonymous	More support for community and educational inclusion. More support for PCA's and caregivers- they are so hard to find! Further family supports including family therapy, respite options, etc. Shorter wait lists for all types of service providers (beyond just diagnosing but including treatment, social skills groups, etc) So much here! There's a significant need for further training for health care providers in all areas and environments (ie. ER's, primary care, dentists, peds and adult hospital units, labor/birth, Long-term care, etc) along with increased funding for training, and increased reimbursement for working with DD/ASD clients (as they often need longer visits/ more significant work-ups). .... Greater need for integrative educational services. More support to keep kids in Setting 2's.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
Cindy Clearman	ALL of the above are vital, as a continuum of services is needed provide the most effective programs of children and adults with ASD and their families. Programs for adults with ASD in the community are insufficient in most communities. As a special educator who was served many students on the autism spectrum, my primary concerns are with disparities in diagnosis, presentation of diagnoses and implications to families, availability of appropriate services in the public schools, and training of teacher and support staff.Themes Addressed: Disparities in access to services should be addressed; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Cheryl Eng	This is huge, many areas of the country have almost no services at all, and what is available has a very limited amount of space, hard to get to or not advertised to the people that actually need the services. Paperwork and funding obsticals are prevalent. Either the treatment isn't covered by insurance or it is priced at a rate that the average middle class family can't afford it out of pocket.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Claire	For starters, don't look into Autism Speaks. It's the Susan G. Komen of autism charities, and shouldn't be looked at unless it's an example of What Not to Do. Autistic-led charities are always a good choice, and some federal autism societies and the like have some good things, but also screw up on many levels. So, it's touch and go and needs to work better. Overall, I can't really say, because needs are different for everyone. Things like the Judge Rotenberg Center, however, need to go and should never have been able to start. Overall, a better access to services needs to be done, as well as an addression of the sheer gap between services for children and adults- compared to children, Autistic adults can usually expect to get breadcrcumbs of that amount. Community inclusion needs to focus on acceptance, not awareness. Listen to them. Understand that ASD is not a lack of social skills, but a different default set of social skills and sensory traits and the like. Invest in the social model of disability, not the medical. Make teachers understand that an IEP isn't just "for funsies." Having my IEP ignored or belittled by all but maybe 2 teachers throught my k-12 education was a severe roadblock which had terrible ramifications I cannot stress enough. As well, give better disability training and install more checks and balances. Listen to the kids they're in charge of. Don't do ABA. it's abusive, and there's different modes of communication other than speaking. Not making eye contact does not need to be fixed, nor does stimming. It's natural to us, and helps us live in a world not made for us. There are far, far better alternatives out there that are not abusive. Understand that if you've met an Autistic person, you've met one. we're all different. We're people, not dolls. We're Autistic our whole lives, and need support to function in an inadequate world our whole lives because it's inadequate. As well, we need to focus on acceptance. We're not going anywhere, and continue to exist. We need people willing to accept that we're going to act different than them, and not people trying to change us simply because we're different and not "normal." This can be achieved through teaching non-autistic people that there's more than one way of interacting, and so on, as well as teaching non-autistic people how to interact with us in other ways (i.e. not forcing eye contact).Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for better services to foster community inclusion of those with ASD
Penny Salvato	I have not yet found a system that is easy or timely. There are even fewer services to families in crisis. There are very few services that are available or even affordable for families. Schools provide the bare minimum to students. Even though schools say there no limits to services, they certainly exist. Also the services that are provided are very limited. Most insurances do not even cover Autism services. Our kids are left without help. There are very few services available or even fewer that are affordable. So many of our kids would do so much better with services if we could simply access services.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Donna Gruber	The funding for individuals with autism spectrum disorder should not be at the state level but entirely at the Federal Level like social security (SSI/SSDI) and Medicare. The states are afraid that if they have good services everyone will move there and then they will be overwhelmed so then all the states create artificial boundaries to discriminate against individuals who really need services and create these horrible waiting lists for services that they all need and most parents cannot afford. It is also absolutely ridiculous that a person with autism, which is incurable, has to jump through more evaluation hoops to gain the funding for community based services when there are literally YEARS OF DOCUMENTATION from when they are in school!!!! What an unbelieveable waste of time and $$$. Once someone is diagnosed with autism there should be a one time entry into a system that will provide what they need as they grow up...continuity of care across the lifespan. The current systems of trying to figure out how to get funding, where to get services etc. creates a huge burden on parents who are already completely overwhelmed with the care of an autistic child. There should be access for all people who have autism spectrum disorder and a stop to all these waiting lists and discrimination by IQ. Stop these IQ tests!! Education also needs to be moved away from this useless equality of access to getting specific education from K-12 all through school focused entirely on vocational training, independent living, mobility (getting around), and community living. So much time in my son's education was spent on learning useless things when he could have been learning job skills and skills to live and work in the community. A whole curriculum could still meet state standards but would be written specifically to these goals. Eg studying weather should be focused on how do I dress, how do I plan for transportation based on the weather, how do I make sure my home is heated and cooled etc. The current books and curriculums are 100% useless toward moving our children toward being able to live life as much on their own as possible. There needs to be some kind of research into providing safety for our children and adults. For the ones who elope, there needs to be a nationwide tech system to be able to locate them using some kind of GPS tracking device. There needs to be more work done on how to make sure our autistic adults are safe at home in the communities. There is working being done on Smart Homes and kind of an onstar thing for homes for disabled people but these companies need funding and help and this made available all over the country. The main problem is there is a variety of interventions, information, etc. all over everywhere but not easily found or accessed. There needs to be a one stop place and path for these things rather than every parent having to spend hours and hours and hours of trial and error trying to figure things out on their own...multiply this by every family with an autistic child and you can see the ridiculous waste of effort of having to invent the same set of information, supports, etc. over and over and over again.Themes Addressed: Improve the quality and availability of services within the educational systems; Improve the service systems and service models; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	My daughter goes to a public school. I think they do very well with inclusion. She has a one to one aide all day. She spends part of the day in the class room and part of the day in special ed classroom. She has speech and OT weekly. Like I said in response to #4, the summer is completely left to me to fund and figure out where to find services and transportation. I don't feel we have community inclusion. Wayne county Ohio doesn't even have a support group through the local National Autism Society chapter. We don't have special needs story time at the libraries, swim lessons, or anything for special needs socially. I have now taken 2 prescriptions to the pharmacy to try to use meds to help my daughter focus and I'm still fighting with the insurance to cover them. Why does it have to be so difficult? I'm not even trying for the liquid, which she needs due to sensory issues. The liquid is several hundred dollars per month out of pocket. The nearest autism specialty school is 30 minutes one way. We don't have one in the county we live in. Why??? And why is it up to me to figure out how to pay for it, if we did have one nearby? I rely on MRDD's parent to parent program to help me with therapies during the summer. Not to mention me figuring out how to get her there with a full time job. Not one person has any suggestions on tutors for her or behavioral help. We need more Autism specialty schools and they need to be accessible to all Autistic children and young adults with opportunity for job placement. We need more awareness, acceptance, and respect for our children and adults on the spectrum. Autistic people are not lost or broken, we just have different views, minds, and abilities and it's time the world respected that and made room for us instead of locking us away.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Donna Miglino, Parent	Education regarding ASD needs to be a mainstream topic. At the youngest level, children should be taught about how some people can be different, and how acceptance and compassion are the best ways to support our communities. We are responsible for each other. There should be more sensory friendly access to public places.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Elizabeth	All of this. These are all extremely important. We need funding and stricter requirements about insurance paying for services.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Education and family well-being.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems
Anonymous	Cost effective service delivery is a major issue. Many insurance companies do not cover necessary evaluations or non-traditional treatments. Out of pocket expenses put many families in debt that they can never recover fromThemes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Geovana	Service access and utilization Health and safety issues Education Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Wendy	There need to be many more resources available nation-wide for families, especially siblings of kids with autism. What is the effect on siblings? How can patents address this? I would love to see the impact of specialized schools for children with autism, including those,that are high functioning. I would also be interested in the depth of education courses at colleges and universities and how they help teachers become prepared for dealing with a mainstream population of children on the spectrum. Findings and a plan must be shared with families and those on the spectrum. A curriculum needs to be mandated for university students in education programs. But also, teachers already in the profession should have mandatory professional development.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Rural families need help in getting services. ALL Insurance companies need to be mandated to pay for at least half of ABA therapy. Schools need to be able to better handle our children so they aren't just "babysitting" for the day - - our kids are smart and they need to find the way that our child best learns. Communities need to be willing to include our children in all that is happening. Quality respite care is needed to help the caregivers get that break they need to refresh. All providers need to be able to effectively deal with kids, ED providers, Specialists, etc. There aren't enough resources out there for families - especially ones in very rural areas. We need more providers who have the background and knowledge to help us treat our children since they seem to respond differently to "normal" methods. insurance companies need to be mandated to pay for ABA therapy, not saying 100% but at least half so that it is more attainable for families. Functional medicine plays a part and we need more providers who want to go into this field.Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	We need more residential and educational funding in ASD with therapy to train these individuals to become a functional member in society. Many times it is better for children with ASD not be in inclusion classrooms as it disrupts the learning of others AND a child with ASD can learn better in a structured 1:1, 1:2, or 1:3 environment which can improve functional outcomes. Inclusion can be at social times such as recess, lunch, snack Etc. We will have an increase in success stories with the education provided in this way Also insurances for a child with sensory processing deficits or ADD is limited and many states provide funding for years with children diagnosed with ASD makes you wonder if all the diagnosis is by funding limitations of other learning impairmentsThemes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Anonymous	community inclusion service systems service access and utilization education family well-being again in that orderThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	Intervention. Intervention. Timely behavioral services intervention. Outreach services like respite care, family networking, teen and young adult social networks. Comedy clubs. Service animals. Demographic alignments to the extent possible between clients and service providers/ behavior interventionalists.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Need to be more and better access to specialized services for ASD
Jenni Sherriff	Good question. As far as I know, my community doesn't HAVE any services for autistics ... especially not for high-functioning autistics like myself. Survey the neurotypical community. Educate them on how to properly treat autistics. ... Quit researching autism. Quit surveying epidemiology. Start researching the way the community treats and reacts to autistics. Start figuring out patterns in the abuse we suffer from the non-disabled people in society and figuring out ways to keep that from happening.Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Jenny Keesee	Insurance is a joke. There's so many hurdles to use ours it's not even possible to access it. In Ohio there's no providers. Something is wrong with coding or something and the centers can't afford to utilize insurance to cover needed services so parents are forced to pay out of pocket. Schools do not provide appropriate services and don't want to change what they're doing so parents end up having to pay attorneys to get appropriate services. All community service providers need trained in providing help to families with autism Educationally more education for school districts on higher functioning kids and the issues they face. Also for the Part C, greater education in finding children with ASD and providing INTENSE early intervention. Funding for full day preschool for children with ASD Research how effectively states are helping ASD families/children/adults in all stages Early intervention, School age, adulthood.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Jamie Lopez , Parent of autistic child	It would be wonderful if diagnosing doctor could put parents in touch with an advocate to walk them through the next steps after being diagnosed. Also, waiting lists for therapies are months long. What do parents do in the meantime? Where do parents find help for the changes they need to make themselves within their home? Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Julie Lorenzen	More policies could be developed to support well being of families. Also, the best programs and services are offered in big cities. Not much is available in rural areas. The more rural the area, the fewer the resources. Two questions come to mind: How can students with severe behavioral problems be best served in an educational setting? Should suspension be avoided in favor of intensive and compassionate psychological support? (Ross Greene and his ideas on CPS (collaborative problem solving) in the schools provides the best solution I've seen, but his ideas are not widely embraced ye.t)Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems
Kelly Soisson	Lots of services for young kids. Our teens and young adults need mentor ship programs. They need peers to accept them and include them. We need our kids to have programming in school that meets their needs. The public schools need to be doing out of the box thinking. Yoga, mindfulness work, self regulation and most importantly executive functioning work. We need to be having schools outplacement kids to schools that fit the child. We need more community outreach to get these children to be involved and actively engaged. Parents are overwhelmed, emotionally and financially drained... Help us help our kids to have the skills to survive AND thrive when we are long gone.Themes Addressed: Improve the quality and availability of services within the educational systems; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Kristina, Project Youth Learning and Leadership	Independent supports need to be encouraged and supported through funding. Schools are not closing the achievement gap with these students. They do do a lot, but they cannot do it all, without completely changing their approach. Outside independent teachers, therapists, supports should be able to "contract" with schools and or families and access those students on school grounds --it's unfair to the families that students are required to attend, but then fall further and further behind. After school interventions suffer due to a student's energy level. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Kristen Brown, Parent of two ASD sons	Many ASD children suffer anxiety and depression, but the mental health services when things get really bad are rare. For instance our youngest child had suicidal ideation at age 8. If his ideation were to worsen, we were warned hospitalization would be in an adult facility, there just are no pediatric beds available for psychiatric needs near our home. The closest would be over 200 miles away. Our most fragile when they are most fragile have no options. Let autistic people tease this out. I think Temple Grandin started this and people like to understand why they function the way they do. Then they have that "ah-hah" and see how the fit in the world, just differently. Education is key. Should extend to teacher certification. Currently in California a general education certificate does not require any special education training. This lends teachers who frequently respond to autistic students in ignorance often causing emotional damage to students with autism. State level shift to require teaching credential includes child development courses needs to be implemented.Themes Addressed: Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	1. Family well-being- conducting research is beneficial but once a child is diagnosed with autism there should be some type of consistent support to focus on the financial, mental and physical health of the parents of children with autism. 2. Service access- more autism services should be made available in low income & "minority" communities. 3. Cost Effective service delivery- many interventions that are effective for children with autism are either too expensive or not covered by insurance 4. Safety issues affecting children Themes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Laura Cichoracki, parent of a teenager with autism	This whole system is a mess. Fortunately I am persistent to an unapologetically annoying degree, and our staffers are marvelous people who have my son's best interests at heart. I have no idea where to get information on services of any kind, but I know who to ask to get the ball rolling. I know that not all parents are as persistent in asking questions, taking notes on communication with agencies, and following up as often as necessary. It is a hard job to do and it will make you crazy at times. I also know that not all caseworkers are interested in doing an exceptional job or are simply not trained enough to answer these questions for the families they serve. Additionally, I think more intervention needs to be done with law enforcement. Too many young men are hurt or killed during an autistic meltdown. Law enforcement needs a LOT more training in recognizing the difference between a psychopath under the influence of drugs being aggressive and an individual with autism whose brain is malfunctioning and in the process of rebooting and has subsequently lost self-control. There are nonviolent crisis intervention methods out there, but too few police departments use them. Again, more ABA resources need to be made available. They should be commonplace, mandatory. Law enforcement and first responders need a lot more training in autism. They have to be cognizant of the autistic persons in the community (and that does require some communication on the part of the guardians) and they HAVE to know that using a dominant, authoritative demeanor to approach a person in the middle of an autistic meltdown is going to backfire. Every. Single. Time. They need to know that autistic tantrums are like computers crashing. They are out of control, completely nonfunctional, unable to process any new input until it has completely shut down, been rebooted, and damage repaired. You just cannot boss a tantrum into submission, trust me. Ironically, in my area, if my son needed acute help for a meltdown, the local hospitals would REFUSE to treat him BECAUSE of the autism. I will not ever call 911 for assistance because I can't truly trust the first responders to look past protocol and see him as he is. Instead I have to resign myself to possible injury and/or property damage, because it is the lesser of two evils. It would be so nice to know that IF he ever melts down to the extreme, I could call for immediate help that does not result in him being thrown to the ground, bodily restrained (which also is going to make things waaaaaaay worse), handcufffed, arrested, locked up in a mental hospital, or anything else that has effects past the point of his brain rebooting.Themes Addressed: Need to be more and better access to specialized services for ASD; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
LISA, Special Educator	Almost all of the above should dovetail together to provide comprehensive support to students with Autism and their families. Family support and education is vitally important so parents are not surprised when k-12 education ends and the types of support offered to their adult child differ greatly (or rather POORLY). Also, parents need to look to the future and plan for their student's needs for when they are no longer able to care for them. Many parents do not face this fact until it is too late - if at all. Priority to educate the students with Autism, but also to revamp the entire system so there is additional funding beyond the age of 21.Themes Addressed: Improve the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Lacee Parod, Parent/school employee	Service access and the cost effectiveness of it. Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Increase the accessibility and utilization of services
Lisa Settles, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders	All too often the service delivery is so piece-meal for families with ASD. There needs to be a push to develop treatment centers that house all of the potential treatments that children need in one place so as to minimize stress and financial burden on the families. There should be registries in each state. There should be centralized information dissemination branches in each state and major metropolitan area. There should be family navigation services available in each state and major metro area as well.Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Anonymous	Family well-being, cost-effective service delivery, community inclusion Parent training for behavioral strategies, staff training in educational, community and residential settingsThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD
MaryAnn Pranke, Parent of Child with Autism	Services remain the greatest barrier. Many promises very little delivery. There needs to be performance measures tied to funding. You don't help the people you are funded to help, you don't get funding. Agencies talk a good game, spend a lot of money on PR but continue to deny services. Must still threaten with lawsuits and grievances to get services. Need more education for parents and first responders and bringing these stakeholders together. There are many concerns from parents. My greatest fear is what happens if my son's actions are misinterpreted and he is arrested or beaten or killed as has happened recently? It is a fear we as parents have. More is needed in this area. Themes Addressed: Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Marsha Salome, Parent to 15yo son diagnosed with autism at 3	Most services I found were due to another person sharing. In michigan, there is a family support subsidy. A DHD worker had no clue about this subsidy and found out through me about it. A STATE worker had no idea about a STATE benefit that could help her grandson who was diagnosed with autism. That is wrong. Create a website or lost dedicated to any and all services and benefits and information available. First, create panels of parents and children affected by autism willing to meet and discuss strategies as well as parental FEELINGS. Parents feel very alone, can lose hope, can get stuck in victim mode. That will help no one. Parents need to learn how to advocate for their child because they know them more than anyone. We need to lead by example to educate public. Parents who want to sign up for constant updates could be added to a database that would disseminate info as it is changed, deleted, modified, and or updated. I believe it would be helpful for local law enforcement and fire agencies to have a database about a child with autism living in their community. First responders need this info to respond appropriately and safely in order to assist the child. Parents would sign up for this. Be sure to get all agencies involved in training police, fire, any first responders in what they MAY encounter when meeting a person with autism in an emergency situation when commotion, lights, and sounds may cause panic for those affected. Pulling a gun, tasering, aiming fire hose, etc...those actions will not help. Knowing ahead if time may be just enough to modify the behavior of first responders so as to then have a possible positive encounter with someone on autism spectrum.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Vicki Martin, Lakes Area Autism Network, Warsaw, IN	health and safety issues & community inclusion.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	DELIVERY: The Medicaid Waiver needs more funding or more precise distribution. Violent children in the home getting priority. RESPITE: Some people need more respite than others. More money for respite. Places for out of home respite. EDUCATION: Schools need to be forced to comply with IDEA FAMILY WELL-BEING: My other children suffered socially and academically. We couldn't have an active social life or participate in any activities that required parental support. We were all locked in the house. We all lived with the safety of their brother in mind. Autism was life-altering for us all. SAFETY: Elopement. The local police department has included him on a roster detailing our specific concerns. COMMUNITY INCLUSION: It is getting more difficult for our son to participate in community life. He went on a field trip to the zoo in December with his school. He chose to sit in the car. Sitting in the car at the zoo in December is not community inclusion but it will show that it is in the statistics. We took him to the beach recently. We tried to change him into his swimsuit in the car but he wouldn't have it. He went kayaking fully clothed. What if he had removed his wet clothing right there on the beach? Fortunately, nothing bad happened. He had a wonderful time. In the larger community, there have to be a lot of concessions made for him. I don't think there is a budget for that, especially in staffing, snacks and appropriate transport. The State stepped in with early intervention at 2 years old. Then, the school district took over with an excellent early childhood program. Every school district should have one. We are very satisfied with the schools and their support for our child and family. We pay for it by living in an affluent community. It is worth it. RESPITE: In home and away from home respite is needed for family time, parental illness, or times of crisis. Our son was lucky during a crisis period to find a bed in a pediatric psychiatric ward. It was not appropriate for him though. Staff wasn't trained to work with PECS.. They weren't prepared to care for his every personal need. SCHOOLS HELD TO IDEA: Our school district has been awesome but during our time of crisis, other parents of autistic children were making the news for lives destroyed. Those tragedies would have been preventable if the schools had been held to their obligations under IDEA. (See the cases of Kelli Stapleton and Dorothy Spourdalakis) CONFIDENCE THAT OUR CHILDREN WILL BE CARED FOR: States are cutting budgets at the expense of the severely disabled all across the country. How can we parents have confidence in the system when our children can be used for political in-fighting and cost savings? Strengthening collaboration is important since moving everyone into the community is off-setting costs onto other sectors, like medical, law enforcement and community centers/park districts. If you are so sold on community integration, then you have to work with the communities. Those local tax dollars must be contributed to our children too just like the local schools use the tax dollars to educate our children.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Improve the service systems and service models; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Mary Schmidt	Service access and utilization, family well-being and community inclusion. Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Megan Galvin	Family well-being Education Service access and Utilization Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Melanie Pucino	Education I have fought for 2 years to get a 504 plan. I would like to not have to pay so much co-pays to get the services my child needs. We are not entitled to social security, as we work. Help working families I feel educational, I have faced numerous problems with my child's school. I would like to know my rights as a parent, to what help my child can receive. The school is failing my child. Make it easier for usThemes Addressed: Improve the quality and availability of services within the educational systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Meridith Myers, Tanager Place	When a child is first diagnosed with ASD, they should be connected with an ASD care coordinator who can help the family identify and find needed services, along with funding sources. There also needs to be universal coverage for ASD services.Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Anonymous	1. Train and provide qualified navigation support personnel or social workers who will review available service options with families AND CHECK BACK ROUTINELY, offering assistance/counseling to determine areas of need. Some hospitals have Autism Navigation Nurses. Expand their role. 2. Provide incentives to the profession of care-workers (e.g., AA degree/certification in ASD care, higher pay, access to quality CEUs, benefits packages, supervisor evaluation rubric) to promote recruitment and retention of quality career caregivers. 3. Expand role of professional in #1 to include home and school visits. 4. Focus on transition and adult services, including supportive housing and work opportunities. 1. Utilize and expand "medical home" initiatives to include Autism Navigator professional. 2. Develop one-stop collaborative historical collection of an individual's medical, educational, vocational, housing, CAM intervention, and behavioral supports to streamline service delivery.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery; Parents/caregivers need assistance navigating complicated service systems
Lani White	Family well being, service systemsThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models
Toni Poh, Educator	Autistic kids should be able to stay in their own school with their siblings and neighbors. Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Priscilla Arena	Community inclusion. I find that parents of typical children really don't understand anything about Autism. Autism awareness are simply words, rather than something people are taught. There is an incredible amount of judging that goes on. Services: It is a common thread that public school districts have not only a lack of understanding about ASD, ( mandatory further training to educators needs to be implemented), but they have an unwillingness to educate parents on services they are entitled to. Many times the school system is the first place people go to for help and direction. They constantly mislead people so the parents don't get a diagnosis till later for the child, which in turn prevents earlier intervention and may inhibit the child's progress. In actuality it may ending up costing the state/gov't more as they are out. Educational needs the most research and help. Teachers that" claim" to be" certified in" special education" simply took a 2 hr online course. How could an educator possibly learn all that they need to about Autism in that time. So the teachers end up misinterpreting behaviors and punish asd kids, contributing to the alienation, which in turn contibutes to the child's depression.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Paul Raich	Service access and utilization. Not having service causes lifelong consequences. We were able to get help to get the services our son needed. But if we didn't get the help of if we could pay for something out of pocket? The answer is not very palletable. Second health and sAfety should have more importance. Every few months, you here about a child with ASD who runs away and ends up dying. I worry about this happening with our son.Themes Addressed: Increase the accessibility and utilization of services; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	There are many gaps that need to be lessened in service access and utilization. Families need to be better informed about education and what they can access and there needs to be more education out there in general. Inclusion is also an area where there is an enormous gap that needs to be lessened. More employment opportunities for those with disabilities are neededThemes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems
Anonymous	Family well being. Lack of support systems mean many families are figuring it out on their own. Early intervention is decent but after that it's down hill Second making sure Aba and other services are available to all familiesThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Anonymous	Service access & utilization. I live in a small town, not many providers, and few that accept the state's (FL) managed care plan. Those that do, vacancies are non-existent & appointments are hard to come by. That leaves many only two options, go without therapies, or pay out of pocket. Most go without (like we currently are). There is a waiting list to be put on "straight" Medicaid instead of a managed care plan that hinders access to care, but the wait is like for years, if it even happens at all. An eternal limbo. Education is a sick, sad joke. They wanted to cram my son into a tiny trailer classroom with 10-15 other children both violent children & children who cannot defend themselves nor speak, nobody potty trained. Then, although legally there was supposed to be a teacher & an aid, there was only a single teacher, no aid. To add insult to injury, the school ridiculously only offered 30 minutes of speech therapy A WEEK for my then non-verbal severely ASD son when previously, privately he was receiving 3 HOURS a week of EACH speech & occupational therapy, & one hour a week of physical therapy. The pitiful educational system ultimately forced us into homeschooling. federal laws to mandate coverage for all therapies (especially ABA), removal of bureaucratic roadblocks to adequate care/coverage for therapies, medical care, & DMEs.... Provide substantial advocacy assistance (medical, insurance, financial, Social Security red tape/roadblocks) to families caring for ASD afflicted & the patient as well.Themes Addressed: Improve the quality and availability of services within the educational systems; Improve the service systems and service models; Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems
Samiya Ahsan	Kids with disabilities who dont have the ethnic communities to support them often have no one to play with them and no inclusion else where. For lower income, medicaid will not cover ABA which is essential for autism, medicaid does pay the msc who has still not managed to get one single thing done. The system serves itself and the children are screwed. Family well being is soemthing i am hearing abot for the first time here. Only people who can afford lawyers manage to get the educational needs of their kids metThemes Addressed: Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD
Suzanna Dillon	1. Service access and utilization - particularly educationally-sourced services rather than medical services 2. Community inclusion - particularly in health-enhancing programs. 3. Health issues affecting children and youth with ASD We also need to more closely address health disparities for children and youth with ASD. Support to community-based programs needs to be prioritized so that youth learn healthy habits and have community-based programs to access across the lifespan.Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Alexa Appel, Autistic person	Acceptance. Hiring more adults. Less on curing, more on finding ways to fit people who are aging out of the system into new support networks. Destigmatization of disability in general. School accommodations. Making public education, in general, less actively hostile to young minds who learn in ways that differ from the accepted "norm", because honestly it's not actually all that good even for neurotypical kids it's just that they manage to adapt to that ridiculously maladaptive environment.Themes Addressed: Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Shayna Franks	Not much you can do about wait times, there just aren't enough people in the field. But when seeking services. I had wait times from 6-8 months, which is terrible since they could benefit right away.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery
Rebecca Singleton	Our family's greatest need in this area is community inclusion We need support and systems in place for the maturing children with ASDThemes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Cindy Fogle	It's not just about the lack of availability or convenience of services, but the abundance and availability of competent service providers. This includes promoting education and careers in various therapies. Classroom cameras!Themes Addressed: Need for an adequately trained and compensated workforce to improve available services and service delivery; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
a	community inclusion education family well-beingThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Need for better services to foster community inclusion of those with ASD
Shannon, Mom to 3 boys with autism.	CMH only accepts Medicaid not private insurance. Other places take only private. In many towns half the families can't get help because they have the wrong kind of insurance. Family stress is extreme; there are NO mental health services for parents to deal with the stress. Schools can't afford to meet the needs of our children & put them home based. The parents are expected to supervise & educate them seeing a teacher only 4 hours a month. How can the parents maintain employment? The kids get no peer socialization when they most Need to learn social skills. Educate the public; they harshly judge parents, autistic adults & children because they are ignorant of why autistic individuals look normal but act different. Research based therapies exist but no service providers accessible. Closest provider is a 4 hour drive each way & out of state. Our insurance won't cover (because they are out of state.) Affordable mental/behavioral health services are only available in major cities. Most families can't afford to move. We NEED access to providers & means to pay for them. We can't afford fencing & trackers to keep our kids safe. You go to the bathroom & they're out a door or window & running.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous, Behavioral Specialist consultant	In my experience, children have access to most available service. However, the educational system is not prepared to support the person centered plan. Then when transitioning to adult services after school, the availability of service declines at a critical time when it is easy for the individual to regress. The parents that I worked with, were eager to learn, and already were aware of the behavioral effects of the diagnosis. However, funds were limited even with waiver support. I was only permitted to see most clients once a week for an hour. this does not allow for interaction and intervention demonstration.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services
Anonymous	Most definitely Education.. The enemy of children on the autism spectrum is COMMON CORE!! The people who put together this program do not even vaguely understand the basic nature of the deficits of children with ASD! (Social, behavioral & communication skills) How can the TRUE potential of these children be tested or gauged if you are asking them to do what their brain cannot! It's like asking a hearing impaired person to listen & then comment on a concert! Adjustments have to be made in testing & progress reports! Every child is an individual, whether autistic or typical. Lumping all children into one common core is a disservice to all!!! But especially more education, awareness & understanding of ASD for not only the families & parents themselves, but any professional or lay person that is involved with children. ASD is complicated because it displays itself differently for each individual ! Themes Addressed: Improve the quality and availability of services within the educational systems; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	As earlier, reaching traditionally under-served populations. Community participationThemes Addressed: Disparities in access to services should be addressed; Need for better services to foster community inclusion of those with ASD
K G	Our area is extremely limited in Pennsylvania. There are numerous services available but all near major cities 2 hours away from me. There is very limited services locally. I would like to see more services offered to rural communities. I had a very difficult time getting teachers to understand my sons issues because they are internal. People assumed just because he did not outburst in school, he was fine, but they didn't understand what we dealt with at home.Themes Addressed: Disparities in access to services should be addressed; Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	All elementary schools should have trained ABA aides and follow IEP's. They say they do, but then they don't. Autism children often need a one on one aide, and not be put in disability classrooms with all types of disabilities that was done by two schools in Tampa, Florida. I was appalled. I'm a frustrated grandmother of an autistic grandson who is now seven years old. Fortunately, when first diagnosed he received therapies through the state of NY. Unfortunately, when the family had to move to Florida, the schools were not prepared for autistic children's special needs and private therapy organizations were too expensive. The gap that needs to be addressed: federally funded companies that do not have to apply to state regulations to pay for autism therapies. A horrible loophole. [Minor/Dependent Name Redacted]'s Dad's company will not pay for autism therapies, and private organizations are too expensive. My daughter had to hire an a advocate to fight for [Minor/Dependent Name Redacted]'s IEP and it wasn't followed. She could not afford an attorney. I'd like to see that all companies must pay for autism therapies. It's going to take a lot longer for [Minor/Dependent Redacted] to recover from untrained aides and lack of badly needed therapies. [Minor/Dependent Name Redacted] is cognitive and Autism speaks needs to fight for universal coverage for children and adults through the federal government. If your organization can alleviate that federally-funded insurance loophole, [Minor/Dependent Name Redacted] and I will be forever in your debt. [Minor/Dependent Name Redacted] could be integrated in a regular elementary classroom at least 60% of the time. Autistic children should have that exposure. However, because behaviors haven't been addressed, he will have to have those therapies along with understanding. Special ed teachers AND aides need to be educated on how to help, instead of injure, autistic children in the classroom. They cannot be treated with the same solutions as the regular children.Themes Addressed: Improve the quality and availability of services within the educational systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	efficacious and cost effective services including therapy that is covered on an outpatient basis in addition to school based therapy family well beingThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the efficacy and cost effectiveness of services and service delivery; Improve the quality and availability of services within the educational systems
Grace Gengoux, Stanford University	Community inclusion for social programming and employment. Cost-effective service delivery (parent training, group treatment models)Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Need for better services to foster community inclusion of those with ASD
Julie Curry, son with autism, 21 yrs old	My son diagnosed at age of 4. The school system did not provide education he was entitled to,nor how to meet his needs. I was strong advocate. Teachers uneducated in autism at that time. It was constant battle. I reached out to many organizations to assist me and they did including Dept of Education. He did get a core 40 diploma, but now what does he do. Horrible at preparing a parent, legal guardian what's next for my son. The monies for education used elsewhere, certainly not special needs. Used for sports, scholarships for achievers. Services and lack of staff, due to pay or their income. Lack of doctors to treat autism if a patient soley has Medicaid, not fair!Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Megan E Sova-Tower	Education of the public should be a priority. Bullying has a high incidence of occurrence for those diagnosed with ASD- is this because of ignorance? Of the student, but also of the general public as well? Service providers outside the educational realm need to start working with families and schools in order to have a cos-effective service delivery. we must also focus on the education of the public in the understanding and supporting those identified with ASD.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Shimika	I have no clue where I can turn to for help in my area. There should be a website that can help locate resources, and services available to children. Parents in my area do not know where we can take our kids to find kids like them who understand and can gather and get our kids out in the community to help them feel like they belong and not a freak. Also for low income families costs is a big concern so we do not have any idea of what we can do for our kids that we can afford.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Penny Githens	Medicaid Waivers are not reimbursing daily service providers at a rate which allows agencies to maintain staff. Individuals with autism need consistency in all areas of their life, staff included. At present, this just isn't happening. The federal government needs to step up and fully fund IDEA. They also need to push for better outcomes for students with autism. Too many schools still do not use research-based methods. And, there are very few instructional programs in reading and math which are effective for those with autism. Research also needs to occur which looks at ways to help those with autism improve their executive functioning and planning skills.Themes Addressed: Improve the quality and availability of services within the educational systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Pamela Oguagha, Parent of young adult with autism	So much time energy funding resources are spent on early intervention no one seems to remember that children will grow into adults. My daughter didn't receive many services, because of misdiagnosis. We came from a progressive state (CT) who believed in inclusion. It helped my daughter (after our move to MD). I worked in the disability world for 8 yrs, 5 before my daughter was born; This helped too. What the schools/system didnt do I got from the community. I looked for places that had offices of inclusion like the Girl Scouts to help my daughter. I partnered with an org. that provided inservices for organizations/groups my daughter wanted to be a part of. We would then have a 30 day trail run. This proved very successful. Even when my daughter didn't/wasn't a good fit, we learned what to do or not to do for the next group. I educated myself by reaching out, actively SEEKING other parents/parent groups who provided support/education. With my daughter's school, I hired an advocate MCIE (Maryland Coalition for Inclusive Education) and actively attended her meetings. I told the principal of her high school that we are a team, Team [Minor/Dependent Name Redacted]. The more I can do as a parent, the less you have to do. This frees you up to provide the help/support needed for other families. I would have a pre IEP meeting with each part of that team (PT, OT, SP/L). These meetings we would discuss the previous yr, what worked what didn't and how we could help my daughter grow. Loved this support system!Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for better services to foster community inclusion of those with ASD
Anonymous	Service access and utilization, education, health and safety issues affecting adults and community inclusion.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Nancy	The price for therapy is far to costly. If you don't have good insurance you are looking to pay up well into the 10,000 for therapy for your child and that's not ok. How can we help our children when it's so costly? There isn't nearly enough help out there for families. And when there is the wait is long and drawn out. There needs to be more services, more groups, more programsThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	service access and family well-beingThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services
Anonymous	Community inclusion for kids with autism can include park districts (recreation depts), sports, and creative opportunities. These can be integrated with typical kids and make a difference in social skills. I prefer to see family well-being addressed with long-term relationships with extended family, neighbors, friends, and faith communities. Addressing family well-being through governmental agencies (such as county mental health dept) communicates to the family that they are broken and needy because of the child with autism. A lot of those with kids with autism have other children, too. Help those kids have a good childhood by not "othering" them. Some kids with autism do bolt, especially younger ones. Getting word out about tracking devices (such as those used for adults with Alzheimer's) as an option for these kids is a great idea.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Jackie, Parent	All again! These are issues we are facing now! We need help with services, Education, family well being, community outreach, inclusion, safety, cost effective services. Services for children after the diagnosis. Educating teachers and schools about Autism. Finding the right education for children with the diagnosis. A wide range on spectrum and people do not understand the invisible disability. We have information showing Autism is on the rise, we need to find adequate placement and lump them together.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Again, I feel that more needs to be done outside of larger, metro areas and more focus on rural needs. Services are extremely limited in rural settings yet the needs are still there--and may have more of an impact due to ignorance of Autism beyond cities still. Thee will need to be vast amounts of training available to medial staff, not just developmental staff, that can be accessed as individuals grow older.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery
Kristi Stockdale, Parent	Coordination of services is often piecemeal, with unclear responsibilities between insurance companies, public education, and government services. The role of the educational system in providing services is very significant, given the number of hours children are typically in school from age 5-18. We found that our school system was very poorly prepared to teach a child with autism (vs. a more general developmental disability). Best practices on optimal ways to teach reading, reading comprehension, computational and applied math, and writing need to be developed, along with ways of testing progress that take into account the language deficits that many AS individuals have.Themes Addressed: Improve the quality and availability of services within the educational systems; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers
Anonymous	Evidence based practices proven effective for treating autism are limited in some regions. We need incentives for professionals to practice in these regions. We need policies clearly indicating what services will and will not be provided. There needs to be a very clear indication on the credential required to provide evidence based treatment, the funding sources, and what is to be provided if/when these credentialed professionals are not available. As a BCBA I have kids that lose insurance coverage and have no choice but to enter the public school system with severe life-threatening challenging behavior. I have been denied the ability to coordinate services prior to their transition and have been told I am not a behavior expert. The school system then assigns a counselor to provide treatment and the child regresses and severely harms others. Our schools need better accountability. Our students and families need better and EASY access to the appropriate evidence based treatment OR insurance companies need to be mandated to continue coverage. Insurance companies continue to recommend public school for kid with Autism "because that is their responsibility."Our schools need to be mandated AND funded to provide evidence based practices or insurance providers need to be prevented from denying coverage due to school age. We can't continue to lose coverage for our children due to their age or the school's lack of participation in treatment only to see them re-enter a school district that is financially unable to provide them with the services they need. No family should have to hire a lawyer to receive care for their children, but this is becoming the new trend.... Technology for communication and social skills has advanced in the past few years, but the cost is too large for our families. We need policies mandating insurance to cover these costs or we need to provide incentives to these technology companies to lower their prices.Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need for an adequately trained and compensated workforce to improve available services and service delivery
Susie Ross	All of the above. ASD adults don't have access to anything to help them cope with things that are not routine. For example, I leave work every time my 23 year old has a mid-term or final because she has meltdowns about failing, and I come home to talk her down from the meltdown. Educators do not understand ASD and its spectrum of symptoms and behaviors, or even how it manifests differently in each cost. When I die, there is no one for her to live with, and she cannot make enough money to live on her own. Group homes are for those with more pressing needs, and she will fall through the cracks because, on the surface, she looks fine. And she is fine, short term. But when life presses in on her, she collapses entirely. I have watched it happen many times, and there are no affordable services available for her, short of an institution that may be cost effective but a poor choice for her. She can't even drive a car, and having crazy work hours in retail are stressful for her. She needs a better emotional support system, and a way to live in a small setting with people who understand ASD. That does not exist. She can't get health insurance she can afford, either. Today, she is at the high end of the spectrum and is in college but still shows many signs of developmental delays, but when she tells people she is autistic, they think only people like Rainman are autistic, so there needs to be more education on autism and its symptoms. Plus, there are no real services for her because she is good with self-care and lives with me. There is nothing in place for her if I die, and no one else is around when she is facing a meltdown over a situation she cannot handle because she lacks the ability and social skills for those things. She is not mentally impaired, but the educational system made her feel that way, even though she graduated high school with a 3.2, taking the Regent's Core, and doing so without modification. Educational systems must be changed to reflect that ASD manifests variably, and these children need to be treated as individuals, not as a "one-size-fits-all" kid. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Susan Morales	Research educating rural communities and the older population what autism really is, what the autistic person needs and in turn is capable of, and what AND why services are needed. My son will be 12 years of age this August, and is going into Junior High. His public grade school special education teachers were amazing. However, I am very concerned that going into junior high, he will be lost and unprepared. It would be great if junior highs / middle schools had an autism training program for future students so that autistic preteens would get used to navigating between classes and multiple, different variables during their school day that they previously did not have to deal with. In Arkansas, the Medicaid waiver waitlist is often ridiculous - taking literally years. My son needs special shoes as he is extremely flat footed. Years is not an option. It is very frustrating in Arkansas to get any benefit from many programs as the waitlist is just awful. Additionally, I stated in my previous response, I believe that preteens need more help adjusting to life after grade school. They need to have a training program where they learn to navigate multiple classrooms, multiple teachers, and other changing variables that they had not encountered before. Themes Addressed: Improve the quality and availability of services within the educational systems; Increase the accessibility and utilization of services; The broader community needs to be better educated about ASD, to lead to better understanding and inclusion
Anonymous	Services system Services accessThemes Addressed: Improve the service systems and service models; Increase the accessibility and utilization of services
Tina T	Education, health & safety, Education, Education. Themes Addressed: Improve the quality and availability of services within the educational systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Tara McMillan	A financial plan to take care of the vaccine injured child who has autism. It is devastating to the family as well as the child. Who will take care of them?Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	These are all Porten issues. Access and delivery of services, community inclusion, education, health and safety, family support, these are the issues that affect the day-to-day lives of individuals on the spectrum this is where I feel time,money and energy should be focused. Currently the greatest area of concern for us is access and delivery of services. Services. There are so many ways that access and delivery of services can be improved. One example is transportation. This can help with employment, socialization, education, community access. Currently the waiver program is lengthy, and once approved, to hire a service provider it goes to a lengthy process of background checks etc. that make it all but impossible to get a driver for the disabled. they could just put the waiver money on a debit card so that individuals could access Uber or taxi's like the general population, it could make things so much easier. That is just one solution that would streamline the delivery of surfeit services and make access easier and more affordable. That would be a less costly option than trying to expand bus lines and monorails out to the suburbs and to link and connect every job location, education center, etc.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the quality and availability of services within the educational systems; Improve the service systems and service models; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	As I have previously stated this is a huge problem for me. Family stress is increased with constant communication problems and feeling like there is nowhere to go makes things worse. I am already driving around 4 hours a day to take my son to an autism school as there is no appropriate placement for him in my area. That leaves very little time to utilize services that don't seem to exist anyway. To echo my earlier frustration I have tried very unsuccessfully to find a therapist or counselor in my area. If I do manage to locate one they aren't accepting patients. And there is the issue of affordability as my insurance covers very little. I feel a lot of anxiety as time moves on that I am not doing the right things to help my son succeed due to a total lack of resources.Themes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
[Minor/Dependent Name Redacted]'s Mom, Parent	service access nd utilization - should be easy to access, we should not have to requalify every year, beneficial services should be standardized so they are available to anyone who has the diagnosis education - small class sizes, all teachers need Aides, IEP process should be simplified and streamlined, teachers should have creative freedom to use what techniques work. No mandatory testing for these kids, their education is already being micro-managed! health & safety - Police, Firefighters, First Responders need training in Autism Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	service access and utilization, family well being, community inclusionThemes Addressed: Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Anonymous	Accessing Available services in the Mid-South Region is a well kept secret. Parents are not told about what is available. If they happen to stumble upon something there is either a wait list, or they don't qualify because they make too much money, or their child's IQ is too high. Your average blue collar workers are the one that suffer the most. They make to much money to "qualify" for help but they are not "rich" enough to pay out of pocket. A lot of parents divorce so they can qualify for state funded services. ABA therapy MUST be covered by insurance. It is peer reviewed, evidence based, and has YEARS of scientific studies behind it yet families cannot access it for their loved ones because they cannot afford it. It is should be mandatory that ALL school aged students receive at least 20 hours a week of ABA services by trained behaviorists. Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Linda LaPointe, JERICHO Bureau for Exceptional Children and Adults	Family well-being and community inclusion. Families of children moderate to severe ASD are struggling to get through the day. They usually do not have the time or energy to be great advocates for their children because they are spending 90% of their time try to keep that child safe and others around them safe when their system becomes overloaded and they cant help their behavior. Yes services are expensive and those costs need to be looked at but I also feel that the services that are being delivered across the spectrum evenly whether a child needs social skills or needs a helmet to not hurt themselves when overwhelmed need to be revisited and that the majority of funding needs to go to the families who are living daily with severe behavior challenges. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	Lack of providers available for behavioral treatment (OT, Speech, ABA, psychology) is a huge issue. Most especially for families that rely on Medicaid as their primary health insurance. Lack of support and funding to provide appropriate and effective interventions in schools. Lack of a source of care coordination for families attempting to navigate services & supports.Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Stephanie Dahl, parent (2 children w/ ASD)	The most important aspect of accessing services for a family with autism is establishing a consistent and organized delivery model for all care. The sheer number of specialist, the variable services provided by region, the cost barrier, the jargon, the exhaustion - a parent finds themself in the position of needing a master's degree in social work to navigate the complex and arbitrary maze of government vs. medical vs. insurance vs. private pay therapy vs. educational support - it's overwhelming and expensive and inefficientThemes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models
Anonymous	Family well-being and cost effective service delivery. We need to make sure families are able to tap into support that allows them support their other children as well as the child with ASD. We also need to be aware that their is a significant population of students aging out who need a continuum of services similar to what they were receiving in their educational settings and that these students will not necessarily be in the work for full time.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Artea Lombardi, Parent of Eden Autism Services	This is definitely a problem. However, there are a number of parent groups, Regional councils, Autism NJ and special schools to contact. Physicians need to be more aware of what is available because they are in the first line of access. Speech therapy, education, and other services are all very expensive. In theory the fee-for-service direction sounds good, but there is not enough funding to provide services for the challenged. There will be some safety issues down the road with this program which will definitely affect our children and adults.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering; Need for an adequately trained and compensated workforce to improve available services and service delivery
Jim Wurster, New Avenue Foundation	All of these topics are key to us parents. We are concerned with us as we age and are the only caretakers of our children. Children do grow up to become adults and the services are very much lacking for them. We don't need more research to tell us what we already know and already live every day. We need help via funding to implement solutions for our loved ones and families.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Andrea Colburn, parent	There are significant gaps in services that are needed but either too expensive and/or not covered by insurance or have waiting lists far too long to be most beneficial to those who need them. There are also HUGE waiting lists for waiver services offering personal care to the individual and respite care to families overwhelmed with the intensive care needed by those on the spectrum. Couple this with the inability to hire untrained people (can't just call a regular babysitter) to get a break and it's a recipe for burnout which may lead to the individual being placed in an institution and/or increased medical costs for caregivers for stress/health related issues.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the efficacy and cost effectiveness of services and service delivery; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	Access to good services for families with working parents. Proximity to services and supports. ( Not inner city for suburban families) Affordable or funded support and services for working class families.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed
Jeanne Fitzgerald	We have sold our children to Big Pharmacy. Their profits have become more important than the health and safety of our children.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Joe Hickey, CHSC Dubuque	Community inclusion opens the door to services. The cost of ASD touches families Community involvement helps ongoing treatment. Typical families find the costs prohibitive. Community involvement allows individuals to access services. It also allows for respite for caregivers.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Patricia Garon	Medical funding and social services funding and support to imparitively include psychological and Behavorial and adult independent assistance and training for Autistic people and their families. Families suffer extreme hardships trying to provide physically, emotionally and financially for their Autistic loved-one against an uninformed and insensitive community.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Lisa Ackerman, TACA	1) State services are not consistent. We need consistent service offering for early intervention, school aged and adult services. Then of course, funding for the standards. 2) Utilize existing non profits to educate and support families. 3) Move on supporting Avontes law thru the bill process ' we need a push from the IACC to finalize this important wandering legislation. 4) Work with existing adult programming for the elderly, Alzheimers models and replicate meeting autism unique needs. 5) Modify and expand the Autism Treatment Network to have the American Academy of Pediatrics for autism standards of care FOLLOWED and covered by INSURANCE. Only two do this well: Massachusetts and Arkansas. The rest need to follow the best and only be funded if they follow best practices. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Improve the service systems and service models
Bonnie Hawkins, Parent	I sometimes wish insurance would include money for community inclusion. It definitely is helpful with increasing positive social skills. She is in Girl Scouts, but would love to take dance. Before school, when outside services were involved, only a teacher would come, no PT or OT. We lived in an area where no one would drive to although it was written in her infant IEP...services were not met.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems
Lisa Downey	We desperately need universal insurance coverage for proven therapies that work such as ABA and speech, we need better accessibility to services for those in rural areas, and we need support for families and parents for education and empathy.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Gene Bensinger	The creation of a new, large scale, flexible, adult focused autism service infrastructure must be developed and based on individual consumer, not regulator, choice. Multiple agency and government sponsored tax incentives, attractive financing (including guarantees and grants), and zoning reforms should be promoted and replace the current approach of adopting a scale challenged and limited menu of funding eligible service models. The creation of a transparent and consistent national system of consumer accessible service provider report cards, administered by an enhanced inspection and oversight body (similar to the UK system) must be put in place. A national certification system focused on developing a career path for support workers and professionals should be developed.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the service systems and service models
Anonymous	Make funding available and collaborate with existing non-profits that know where these services are and help them reach all the families that are diagnosed. One urgent need is a place for severe behavior individuals to be placed in emergency situations where they are harming themselves and surroundings. There is no one for families to call and emergency 1st responders are not equipped to handle this. Schools are denying to accept diagnosis and say things to parents like we suspect ASD but do not test. Parents are having to pay 6000 to get an evaluation as their insurance does not cover it - so give free evals to families and make them accessible. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Robin Davis	Currently there is no middle ground. As a single parent of a 15 year old with ASD I am unable to work full time because he can not attend regular public school however there is no special school for him to go to either. We have lost our home and most of our belongings and now live at poverty level because there is nowhere for him to go. I have a neurotypical child as well and it is very unfair to her that we can not have a normal social life because of where we live. I can not afford to pay someone to stay with him while I work. I had a $64,000/year job that I had to leave because there was nowhere for him to go.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Elena Kelley, Mother	As a resident of Illinois we are in a bad way as far as services for our children. I live in constant anxiety as to who will take care of my daughter and how. I'm 63 now and worn out. So where can I turn to for services? We get a smidge from the state, but not enough for those of us who worked our whole lives and made enough to live but not enough to become wealthy....I think the desire of most humans is there to help their fellow humans, but without money to pay helpers/experts what do we do?Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous, Pittsburgh Center for Autistic Community	1) Developmental disability waivers or autism specific waivers with adequate funding in all states. 2) Autism education for mental health professionals. 3) More adequately trained autism treatment professionals, more access to adequate behavioral support services; even places like Allegheny county that has better service availability than surrounding counties have too much red tape and policy limitations on access to care. (for example, a child needing a lot of behavioral support will not necessarily get more for treating co-morbid conditions). Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Safety is of concern-need low cost easily accessible devices for the individual who is at risk Too many families have limited resources and funds to meet the needs of their loved ones We need to put a priority on services going directly to the individual Training is nice but the priority should be Direct Services!!Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wanderingImprove the service systems and service models
Anonymous	Resources are needed in the educational and behavioral health systems to provide high quality, efficient, family centered services and supports for individuals with ASD. Funding for these services varies greatly from state to state and is often not covered by insurance companies. Allowing insurance companies to deny coverage based on a diagnosis of ASD is outrageous. Providing a chronic care model for the medical care of individuals with ASD is difficult in the current health care climate that rewards speed and productivity over quality and outcomes. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the quality and availability of services within the educational systems; Improve the service systems and service models
Gilda M Sanchez	More funding for state provided services such as more assistance, resources, staff, and vendors for example, the Westside Regional Center in Culver City, California. Support Groups for family are needed as well.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Deborah D'Arcy	Services for adults are funded through an outmoded Byzantine chain of public and private agencies and providers, each taking their cut, diminishing the impact of our tax dollars. Can we examine a more streamlined system wherein the funds are transferred directly to the service providers without the intermediaries? Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the service systems and service models
Annie Acosta, The Arc	Family Engagement. Research suggests that active family involvement is very important in the outcomes of persons with ASD, yet families are not receiving family support services in a timely manner. Research needs to focus on barriers to family support services. Coordination of Systems. Service systems are very complex and don't always work well together. Research is needed to identify models for seamless coordination of services and supports. Coverage Mandates. Funding frequently determines both the quantity and quality of services. In order to better understand the factors that influence access to ASD treatments and services, studies must examine coverage mandates under federal and state laws, including private health insurance and the Early Prevention, Screening, Diagnosis and Treatment program (EPSDT). Health and Safety. We need solid models for both professional training for law enforcement and first responders and training for people with ASD in order to decrease the likelihood of 'crisis' situations or ones that can easily escalate when a disability goes unnoticed, ignored, or misunderstood. Non-traditional and Non-Medical Interventions. More must be known about the availability and effectiveness of interventions delivered outside medical settings (including family and school-based methods). For instance, animal therapies that are sometimes reported to be effective by families should be tested. Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Patrick Johnson, American Academy of Pediatrics	The American Academy of Pediatrics is pleased with IACC's explanations and recommendations within this section, especially the mention of evidence-based autism interventions in diverse community settings and schools. In general, it is important to recognize that the barriers for ASD services are immense, particularly with insurers; therefore, we recommend that including the particular policy or legislation singled out within the Strategic Plan that would make ASD treatments and services more widely available, especially in rural and low-income communities. Pediatricians across the country concerned with the lack of accessibility of ASD services would then be empowered to advocate on behalf of those policies. Future research should also focus on enhancements in the field of medical telecommunications as a treatment for ASD. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion); Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	Private insurance needs to cover more services with a greater number of hours allowed for evidenced based practices. Easier service access. Free GPS trackers for those known to elope. More training for 1st responders. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Azuree Natice	I'm in California and our Regional Centers are not fully-funded and haven't been for years. Our special ed teachers are not well-educated in current research regarding autism as a neurological condition instead of as a behavioral disorder nor are they trained in best methods of teaching autistic students or best practices in handling challenges. Too many families are struggling with a lack of adequate supports and services. Community inclusion has improved but has a long way to go. Sheltered workshops and a pittance for pay needs to go and dignified employment in the community needs to be supported and expanded, exceptions from minimum wage laws need to be eliminated, and those who are too disabled to work in the community need to be supported and valued and not left to live in poverty with families who are overstressed and overstretched.Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery
Angelique Higgins, parent	Implement a 50 state, annual strategy for autism diagnosis monitoring, so that the true numbers can be compared over time. As part of this 50 state monitoring strategy, break down the numbers of low-functioning/non-verbal/no self-care patients from those who are high-functioning/verbal/self-advocating. Increase budgetary planning and begin to search for private sector partners to develop long-term residential care facilities for the low-functioning autism population. Develop and fund gold-standard diagnostic and treatment centers based on biomarker testing and biomedical remediation. Stop relying on school districts to be the front line of treatment and remediation. Address serious health and safety issues such as wandering with free microchipping/braceleting or other remediation programs. Increase budgetary planning for long-term residential care for low functioning autism.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the service systems and service models
Idil Abdull	I would second what Dr. Mandell has been recommending in this area from housing to law enforcement education and training to wandering to public awareness of ASD. I really think in light of what happened in Miami, law enforcement training is a must. We also still don't have autism amber alert. Devices or seat belts to keep kids safe in cars and ways to keep them safe at home and in group homes is sorely lacking. For example, there are safety harness in school buses but not good ones are available for regular vehicles as though somehow autism meltdowns only happens in school buses. I also think we need better and targeted services and support for nonverbal autistics including testing made them specifically. We always assume if someone is not verbal then they don't understand or can't comprehend. That is simply wrong. Additionally, access for poor and minority kids has not gotten better. I think agencies like HRSA that give blanket federal funding to state health departments such as Minn health dept without any oversight or accountability. In other words, no matter how good or bad job the health dept does in disparities - they still get the same federal funding from HRSA. If there are no financial consequences for reducing disparities then the same thing will keep happening which has been empty words. IACC must really address unequal access and diagnoses for under-served communities with policy and research recommendations. Thanks! Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Catherine Milian, Mother/Occupational Therapist	Development professionals are ill equipped to handle the bedside manners of giving parents the Diagnosis of Autism. Parents are left to find and search for the local resources. Though some would love to hide their child's Autism because of society's treatment. Acceptance is a key element of copying as a family. The studies show diagnosis as early as 6 months. Though early screening has it's benefits of early intervention. The problem lies on the funding of getting a child what they need. This morning the news broadcast a caregiver shot in North Miami, FL trying to return an adult to his group home. Its summer time right now and most are on vacation. The regulation of what happens in these places need to be monitored more frequently. The amount of education for the individuals who care for our children needs to be regulated from every state much better. The individuals such as the police and or firemen should have better training on how to perform their duties when having an Autistic adult or child in their city or town. Besides the parents need more family support when either providing services and or getting emotional support for each other. Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Maureen Durkin, University of Wisconsin-Madison	1. Availability of low-cost or free, accessible and cross-culturally applicable screening and diagnostic tools and services. 2. Trained workforce to identify and provide services for all individuals with ASD.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery
Patricia Garon	Gaps in research and early detection severely limited due to non- government funding.Immediate and encompassing education for early detection needs to be acknowledged by Doctors, Educators and Law-enforcement.Services and support and funding imparitive to the Autism community.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery
Lisa Ackerman, TACA	Families are not experiencing any changes to services or help for these costs. No innovative treatments have been found. I would like to propose the following changes to the IACC: o Consider a more diverse board at the IACC to include some of the world's researchers in cause and innovative treatment such as: Dr. Martha Herbert, Dr. Jill James, Dr. Richard Frye, and Dr. Dan Rossignol. It is my opinion that the current IACC board lacks in ground-breaking research and medical treatments happening today o Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum. ' Collaborate with families via support groups in identifying needs for those living with the autism today. . ' Since 2006, over $3 billion has been spent on the IACC. Families are not experiencing any changes to services or help for these costs. Push the U.S. Dept. of Human Health (HHS) and IACC to collaborate and recognize the needs for services and support for families. We cannot operate in a vacuum. ' Collaborate with families via support groups in identifying needs for those living with the autism today. ' Operate with a sense of urgency in your strategic plan and committees. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Michael Buzzard, Parent of children with Autism Spectrum Disorders	More funding needs to be available for research into causes. Looking for Diagnosis our family had to travel to several different regional and east coast hospitals to try to get appropriate diagnosis. Also more time and resources need to be provided to assist families in guiding them in seeking the appropriate resources, treatments, doctors. We had to learn over years of hard work and trial and error to learn to navigate and even we still are very low knowledge in what supports and resources are out there.Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Denise Rozell, Easter Seals	Easterseals encourages the IACC to prioritize research on decreasing the racial and ethnic disparities in the diagnosis and access to treatment in children and adults. Additionally, there continues to be difficulties in obtaining diagnosis and services in a variety of other populations where specific attention should be provided: rural, adults, families with low incomes, dual language learners, and communities of color. Screening and diagnosis for the very young has improved through early intervention services, but additional work in this area continues to be important. Obtaining and paying for screening and diagnosis in communities with low socioeconomic status continues to be a challenge, even though Medicaid should be covering these services under its EPSDT program. The fact that many states are still not covering a range of autism services under EPSDT or are paying rates so low as to deny access to care coupled with the Medicaid coverage gap and the expense of the services means that many children are not receiving the services they need. The importance of early intervention services for all children cannot be overstated. The total annual cost of providing services to people with autism is presently $35 billion in direct and indirect costs to care for all individuals each year over their lifetimes (Ganz, 2007). With early diagnosis and intervention, the cost of treatment can be cut by two-thirds over the lifespan (Chasson, Harris, & Neel, 2007). Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	We are concerned 'Eight objectives partially met'' These covered 'safety and efficacy of interventions, health promotion, medication trials, interventions to prevent recurrence in siblings, medications to treat co-occurring conditions, community studies evaluating intervention effectiveness.' Although treating symptoms of co-morbid conditions is important, there is a need to find the cause, not medicate the symptoms. We agree that 'JASPER demonstrated significant improvement'' but seek clarification on how this differs from Floortime/DIR. We read with interest about 'New technologies, including devices to serve as social prosthetics (to provide social feedback or information) or tools for communication assistance'' We are concerned, however, that much of these recent research developments are not widely disseminated or understood by families or health and education professionals, the very people who need to be most aware of effective intervention models. We agree 'Future efforts will need to address the needs of the ASD population across the lifespan. Much of the effort to develop treatments to date has focused on children, yet 'it is possible that the number of adults with ASD may be much larger than the number of children with ASD.' We hear from families that once their child ages out of educational entitlement, services drop as they are based on much stricter eligibility requirements and much more limited funding.Themes Addressed: Increase the accessibility and utilization of services.; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Rosanna Armendariz, Autism Community Network of El Paso	One of the biggest problems I've seen and experienced is insurance refusing to pay for ABA. Where I live, Texas Medicaid refuses to pay for ABA and so do many private insurance companies. Applied Behavioral Analysis (ABA) is scientifically proven to raise IQ and improve functioning in children with autism, yet many of us still can not get this highly effective therapy for our children. As a result, our children will be less likely to become functioning members of society and will end up "burdens to the taxpayer." Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Lisa Falke, Commonwealth Autism	more funding for services for adults with autism and more research into effective service models for adults with autismThemes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the efficacy and cost effectiveness of services and service delivery
Anonymous	Granted, every child is not the same so the priorities are not going to be the same, but I could have my son seeing several therapists a day and overwhelm him, but instead we are having to figure out the priority of the month :/ Speaking to policies, we would love to see more therapists and services covered by medical insurance. So much is out of our pocket in the Commonwealth of Virginia.Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous, Pittsburgh Center for Autistic Community	1) Educational equity. Classroom inclusion. Autism education for educators. 2) AAC availability -- particularly medicaid/medicare coverage for AAC-related software and the hardware necessary to run it (such as tablet computers, select smartphones etc). 3) Clinical research on interventions that help autistic people learn and achieve their goals rather than emphasis on indistinguishability.... 5) More comprehensive treatment plans for after diagnosis, including an established behavioral component that helps bridge gap between medical and home/community. Themes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems; Improve the service systems and service models
Dr. C. Rick Ellis, Spectrum Psychological and Forensic Services	Trillions of dollars will be spent if you don't stop the cause, correctly identify in the schools and provide effective treatment including Neurotherapy and biomed. Special funding to provide advocates to help parents get services in the school. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems; Need for an adequately trained and compensated workforce to improve available services and service delivery
Anonymous	There should be a resource to identify whether schools are adhering to research validated strategies for educating children with autism, and there should be trained coaches that can mentor younger teachers. Would like to see a centralized website with model programs and information featured, and federal funding to train educators and providers in underserved areas. There is too much teacher blaming and not enough teacher coaching. Funding special education with highly qualified teachers and support teachers is critical. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems; Improve the service systems and service models
Liza Krassner, Parent and UC Irvine Public Health employee	All of the above are important. As a stakeholder, I have seen gaps in education, health and safety issues and in long term planning for an aging ASD population.Themes Addressed: Improve the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion); Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Jennifer Kiney	Everything needs to be made more accessible. Definitely need to push private insurance to cover more services. Hospital-based services are out of reach to anyone with private insurance. Hence, more funding to community, non-profit, private service providers. More services for teens and adults. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	All of these are too important to prioritize. Please have more funding for adults with autism. Education, jobs and safe housing. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Marc Freeman	As an adult, my son needs all of this and can't access it! There is too much bureaucracy, not enough resources and way too little money to meet the needs of adults with ASD, especially here in Texas. Children have much better access because they are still, essentially, within a closed system of school and living at home. Adults have none of that support and are dependent on their parents. But what happens when their parents are no longer there?!Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
M. Hail	community inclusion, family well-beingThemes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	Waiver services must be available with "reasonable promptness" as required by the Social Security Act. Such services should be an entitlement and portable across State borders. No Wait. No Borders. Further, all services must be person-centered....and in accordance with the individuals personal goals and preferences. Refrain from coercing individuals into making "choices" they would otherwise not make ....coercing them by financial coercion - threatening them with the loss of their life enabling supports if they do not live with and engage with people other people choose as "desirable".choose. In other words, people with ID/DD need not sacrifice their happiness and their lives to accomplish "someone else's agenda". Our lives. Our choices. Respect that. Support that. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Yvette Cunningham	Yoy here lots of go here for help, My son is 19 and we are just getting help with issues that should have been available 18 yrs ago. Services access. Major problem. Cutting funding, cutting service, the kids start responding, cut services. This doesn't work, the treatment must continue, they regress right back to were they were, no retention for years, treatment must continue for life. Safty is big, they have tunnel focus, get lost easy, panicking, can't handle change. Themes Addressed: Increase the accessibility and utilization of service; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Jade Sands, autistic adult	As an Autistic adult in California, the Regional Center system has been enormously helpful not only in providing services to me, but also in pointing me to other worthwhile services and even helping to fund some of them. As it stands, it is very difficult for parents and adults with autism alike to locate services that are worth their time, not restrictively expensive, and not complete medical quackery (such as "Miracle Mineral Solution"). I think having similar regional centers in other places that could provide therapies and other services, and act as a hub for outside services would be extremely beneficial to all families affected by developmental disabilities. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the service systems and service models
Cheryl Miller, Parent and teacher	The most cost effective is to allow the trained BCBA behavior aide into the classroom. This is a year or two process that will help the child and help them be successful in class and later in life. What is happening now is the child is given some aide that is not trained and is ineffective and even making the behaviors worse. What does the future look like for this child. An aide with them for the rest of their school instead of just possibly one or two years. Research shows that the right services and training given early is what is making a difference,....not just give them any aide that is not trained. I have already won a case as a parent against the district for not giving the required placement and services. I am wondering why it is not transparent that the district is spending thousands of dollars against helping students but the district settles and pays two attorneys. This is supposed to not be shared...how is that transparent? Spend the dollars on the kids not on the attorneys. If the parents are willing to pay the BCBA aide then why is the district allowed to restrict them from being in the classroom with the child to help them learn.Themes Addressed: Improve the quality and availability of services within the educational systems; Improve the efficacy and cost effectiveness of services and service delivery
Kristie Patten Koenig, New York University	Public school models of education children with ASD because as a FAPE mandate it is the one hope to reduce the disparity between the have and have nots in autism service delivery. We must provide excellent special education. For example collaborative team taught models with a gen ed and special ed teacher, minimizing paraprofessionals as a means for true vs. physical inclusion. Themes Addressed: Disparities in access to services should be addressed; Improve the quality and availability of services within the educational systems
Anonymous	All of these topics are equally important and really need to be researched and offered as soon as possible it is really sad how poor the services are for families effected by autism in some areas, I cannot tell you how heartbreaking it is to feel like there is something out there that could make a world of difference for your child only to find out it isn't covered by medicaid which is by far the most common insurance provider for people on the spectrum. ABA therapy as well as other specialty services need to be available to all people on the spectrum regardless of their insurance provider!Themes Addressed: Increase the accessibility and utilization of services.Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Dr. Tanya Skalecki, The Arc Mesa County	Each state should be required through policies to have an Autism Accountability Committee that includes parents, family members, advocacy organizations, universities, medical doctors, and licensed psychologists to discuss local issues, concerns, identification and progress related to each state/local communities ASD population. Parents and family members are very concerned about school services, mental health services and transition to adult services. Parent's are frustrated that school districts do not recognize Autism Spectrum Disorder (ASD) medical diagnoses as the educational determinations for ASD are difficult to obtain when students with high functioning ASD (Old terminology of Asperger's/PDD) are not covered in the educational eligibility under many states. Too many students with ASD are falling under the educational criteria of Severe Emotional Disability (SED) and not getting the research based interventions to treat individuals with ASD. Data collected from school districts are unreliable as too many students with ASD are not getting counted as ASD because they are not correctly categorized and pulled for reports. All ASD students identified under the DSM-V by a licensed neuropsychologist and qualify as a student with a disability under IDEA and need specialized instruction should automatically meet the educational criteria for ASD. Educational State Agencies, can easily remedy the disparities of educational determinations by adding to their eligibility criteria "OR the student has been medically diagnosed with ASD by a licensed neuropsychologist" Policies should include additional public awareness, research and intervention support preK-college/work force. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systemsImprove the service systems and service models
Anonymous	Community inclusion Health and safetyThemes Addressed: Need for better services to foster community inclusion of those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Aimee Vitug-Hom	All of the above topics are of great importance. Additionally, there is a demographical disparity in cost-effective and quality services. Themes Addressed: Disparities in access to services should be addressed; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Education and family well being. What can lower income families do when they feel their special needs child isn't getting the proper academic needs at school?Themes Addressed: Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
LOUISE KATZ, ATTORNEY	Delivery and cost are obviously important but without governmental resources to develop and sustain services for individuals wish ASD the crisis that is now occurring across states will become worse. Restrictive policies that (for example) disallow services when a person still lives at home with elderly parents, working siblings or other relatives is an example of how resources could be used to eliminate the need for more costly and limited services such as housing.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Improve the service systems and service models
Laura Baker, Dr.	Education and access to camps and other recreational opportunities.Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems
Anonymous	Also, we need to figure out how to get these treatments easily, quickly, and affordably to the people. Businesses and people need to remember that there will always be ways to make money and the goal here is to just help the kid and family. It should not be a competition. I know when a service really cares because it says "we want your kid out of here by next year," implying that means we did our part and the kid is now back to functioning. My family member attending a school to help those on the spectrum and the goal wasn't so much come stay here for 12 years, it was give us two years here and then your kid will be socially and emotionally prepared to go back to public school. Doctors and libraries need to recommend websites, blogs, and schools for the parents to go research. They can easily have a print out page of this information to hand out. There almost needs to be a Yelp Review type app just for ASD services, Doctors, and medicines/supplements.Themes Addressed: Parents/caregivers need assistance navigating complicated service systems; Improve the service systems and service models
Trish, special ed nurse and parent	community inclusion -no need for more research. educators, service providers and the public in general need sensitivity training at a young age, so they don't grow up to be intolerant idiots.Themes Addressed: Need for better services to foster community inclusion of those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery
Kimberly Perritt, Teacher	Cost-effective therapies and other integrated servicesThemes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	family well -being community inclusionThemes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	See answer to #4.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	Making services for adults accessible and more organized - how can families find what's available? Can we make accessing those services easier, for example, by centralizing some of them? Are schools unlawfully requiring a private diagnosis of autism (at parent expense) before providing SpEd services?Themes Addressed: Increase the accessibility and utilization of services.Parents/caregivers need assistance navigating complicated service systems; Improve the quality and availability of services within the educational systems
Amanda	Education. Health issues.Themes Addressed: Improve the quality and availability of services within the educational systemsPrioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Anonymous	Service access and utilization for both child and adult autistics. Specificly services that hold space for self advocation. Community Inclusion is also an area that needs immense amounts of attention. Themes Addressed: Increase the accessibility and utilization of services; Need for better services to foster community inclusion of those with ASD
Gina Pepchinski	The principal responsibility to aid families of children with autism should not be in the hands of the local school district which usually does not have the expertise or means to provide the services needed, particularly the intense intervention that is needed on initial diagnosis. There should be federally funded, perhaps regional centers of excellence providing for diagnosis and treatment.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need to be more and better access to specialized services for ASD
deborah weiss	service systems and community inclusionThemes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the service systems and service models
Susan Walton, Outdoor Autism & Special Issues School	All are important: Service systems (and more of them!) perhaps most so. Themes Addressed: Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)Improve the service systems and service models
Michelle Baker	family well being, health and safety issues, community inclusionThemes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	Access and education about where to turn are primary issues here. Additionally, maintaining competitive living wages for individuals providing these services is imperitive as well. There is a very high turnover rate to people treating autistic individuals. Not all providers take Medicaid and Medicare insurance as well due to the low reimbursement rate. High quality services are difficult to access as a result of this. Families should not go bankrupt because they want the best for their children. They should not be "co-payed" to death. There should be respite benefits available to families as well. Services across the lifespan is another primary concern. There should be no "cliff of 22" when services drop for people who need them. Employment (meaningful) needs to be addressed as well. Autistic individuals are an untapped resource in our country.Themes Addressed: Increase the accessibility and utilization of services.Parents/caregivers need assistance navigating complicated service systems; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Kathryn Hedges	Inclusion and public acceptance are very important. This includes anti bullying. Access to services is an enormous barrier, especially if a parent if an Autistic child is also Autistic with difficulty navigating bureaucracy. Access to services should not be based on broad "functioning levels" but address individual profiles of needs. It is possible for someone to be literate but lack the executive function for self care. If someone overutilizes ER services because they lack the executive function to manage their health, providing support could save money overall. If someone could live in the community with assistance, it's cheaper than congregate care as well as more humane. Children need to be protected from abuse, bullying, and filicide. This would involve public education and support to prevent burnout.Themes Addressed: Increase the accessibility and utilization of services; Parents/caregivers need assistance navigating complicated service systems; Need for better services to foster community inclusion of those with ASD
Kristine Croto	This is all incredibly important. We need real data on what services are accessed, which ones help (by a standardized measure, not just by parent report), how kids are doing in classrooms, and how they are being underserved. Themes Addressed: Improve the efficacy and cost effectiveness of services and service delivery; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Anonymous	Services are dramatically underfunded and inadequate across the board. A specific gap we've seen is that few children receive meaningful help with social skills. Schools argue that they only have to help with academic skills, and often lack anyone who's even qualified to help children learn to play with other kids or make friends. But social skills may be the most important factor in terms of long-term outcome. Many children do not receive services outside of school, and schools are the only real social context many kids have. Ideally schools would provide meaningful social interventions. If schools will not provide social interventions, we should explore requiring them to allow outside providers in the school. Kids can't learn social skills effectively outside of their primary social context. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems
Anonymous	Education and community inclusionThemes Addressed: Need for better services to foster community inclusion of those with ASD; Improve the quality and availability of services within the educational systems
Andrea Gilkison, Autism Society of Indiana	Please see my answer to #4. Themes Addressed: Increase the accessibility and utilization of services; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Kelley M Peabody	Services need to be more readily available. We live in a rural area and services are hard to come by. We need more individuals with the knowledge to work with our kids in all the areas where they need help. Sensory,etc.Themes Addressed: Increase the accessibility and utilization of services; Need for an adequately trained and compensated workforce to improve available services and service delivery
Dhinesh Krishnaraj, TACA (Talk About Curing Autism)	the early intervention program - we did go through that in Loudoun county of VA, they put him in a special class, he just goes sits there and come back without any improvements for a year, his teacher keeps sending note every day that he hit the kids, pulled their hair, didn't ate lunch, snacks, etc., we weren't sure what was the reason for going to this class and why she keeps telling us he is doing these, finally we had to get him out of the school and send him to India, to be with lot of people around, now in 3 months he made very good progress in behavior and talking and doing things on his own am not sure what the government spends to public schools, but they must try to improve the overall behavior and bring the kids to live normal life, we are not just sending the kids to them to take care for few hours, there must a law for the schools to do OT, Speech and ABA there, but the school teacher advises us to go for ABA on our own, then why should we send him to school, for what, just to have snacks and come back? Do any of you have the power to tell the government to make sure all insurance companies on all plans to cover ABA, OT and speech therapies? then do that first, is paid as high $3K a month for all these services with $0 covered by Cigna insurance (through my employer), if you can help in anyways put a law that all types of insurance should cover ABA, speech , OT and sensory enrichment therapies regardless of federal or employers sponsored insurance.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessl; Access to early intervention services is a priorityImprove the quality and availability of services within the educational systems
Anonymous	Access to effective services and effective education are the priorities. They will find their place in the world if they have the tools to get there. They do not need to feel out of step by forcing them into uncomfortable dilemmas. If loud sounds hurt ears, then what does it matter if they're included in the marching band. Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems
Tina Santana, Parent/Self	My son is a flight risk, so safety is always on our minds. We need to look at being more 'community' in our approach - primary physician, educator, parent, siblings, family - we all need to share the load. In turn, more creative efforts may prove to be the most cost effectiveThemes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessPrioritize services to improve the health and safety, including addressing interactions with law enforcement and wandering
Rachel , Waterson	I would like the local job and family services to cooridinate with the The local developmental board to provide child care so I can work. Finding childcare that doesn't charge me what I would make hardest thing to find for a child with disabilities. my child needs a daycare modeled like a special education classroom. The board is the place I turn for respite and small reimbursements but they tend to give the run around because they are overloaded with low funds. Need more federal funding to go to local supports. Public schools actually have been very helpful in giving my son consistency. Also the local autism society and local children's hospital are helpful in finding services.Themes Addressed: Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessImprove the quality and availability of services within the educational systems
Jen Meyers	Parents need more help in dealing with the schools to make sure that their children are getting everything they need. Most of the time, they don't even know what they can ask for or what is required. I went into this thinking that the school had his best interests in mind just like I did, but soon realized that the schools only care about providing as little as possible to keep down costs. I was fortunate to have a relative who is a special education teacher who helped me navigate the IEP meetings and deal with the child study teams, but most people don't have that kind of resource. If parents don't advocate for their children,no one else is going to, unfortunately.Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems
Anonymous	Education Family well-beingThemes Addressed: Improve the quality and availability of services within the educational systems; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Stephanie Mendelson, SASI (Suffolk Aspergers/Autism Support & Information)	cost effective services, acceptance and knowledge among communityThemes Addressed: Need for better services to foster community inclusion of those with ASD; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Erin Fallon, Teacher and Parent	Early intervention is key to maximizing the outcomes of children with different levels of abilities. These services are home based and address the concerns of the family and the unique concerns of the child. If we invest in the child early, the cost for care for an adult will be drastically lowered.Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Access to early intervention services is a priority
Pat C	Too many organizations skim money from budgets and only a small fraction of funding is used to provide services. Document the money trail from the federal level through state level than down to the person to see how much money is actually reaching individuals. So little gets to the service level that agencies try to find employees who will work for close to minimum wage. There is a tremendous shortage of people who are trained to work with individuals with autism and even fewer who can afford to work for $10 an hour! CDASS for all Medicaid waivers is the most efficacious service delivery. Provide an option for families to manage funding and hold them accountable for how the money is spent. There are too many agencies! One for SSI, SSDI, Section 8, food stamps, DVR, PASA's, Behavior Services, Mental Health offices, DHS, courts for guardianships/conserverships, etc. families need encyclopedic knowledge of where and how to get help. Each agency has different requirements, case managers, forms, assessments, etc. How about providing one link that would help families/individuals identify services that are available and what they qualify for then walk them through each of these? Too often, community inclusion means taking a group of people with disabilities bowling. The definition of community inclusion must be engaging in life activities with typical people in the community. Community inclusion like housing, recreation, relationships, employment must be with a wide array of people. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Need better coordination between service providers, taking into account what is relevant for the individual and the choices of those with ASD and their families/caregivers; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service delivery
Nicole Miller	Access and utilization. My insurance plan still denies coverage for needed services even though there is a mandate in Michigan and the employer has a rider. Systems do everything possible to block access. Family well being would improve if access was better. I spends the majority of my time as a parent just trying to access needed services.Themes Addressed: Increase the accessibility and utilization of services.The cost of services is prohibitive, and research and policies are needed to reduce these barriers to accessFamilies need access to services to reduce the mental and emotional burden of caring for those with ASD
Anonymous	All are important but top two would be service access and utilization and educationThemes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems; Current priorities are appropriate (service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion)
Stacey Phelps Anderson , Parent of three teens w/ diagnoses of either Autism or Aspergers	The entire family is all effected and services need to be made available to have counseling at home for the client, siblings, parents and any other relatives living in the household. Services should be allowed to be accessed by county nationwide based on meeting DSM-5 criteria. Community inclusion needs to be taught by highly qualified ABA therapists who can help the clients be part of the community rather than leaving them at home with families who are alienated from the community. Water safety must be taught by qualified swim instructors and tracking devices need to be made available for those community members that have a wandering diagnoses. Themes Addressed: Need for better services to foster community inclusion of those with ASD; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Prioritize services to improve the health and safety, including addressing interactions with law enforcement and wanderingImprove the service systems and service models
Anonymous	Life span issues and services. Single mothers of children with disabilities have the hardest time, financially and getting the support needed.Themes Addressed: Increase the accessibility and utilization of services; Families need access to services to reduce the mental and emotional burden of caring for those with ASD
Morgan Smith, An Autistic Adult	As for services, there a very few services for autistic adults. When I try to find anything, even support groups, all I find are things for children or parents. Another big thing as it goes to diagnosis is how expensive a screening is. Most don't take insurance and alot of citizens are unable to pay for a diagnosis that would really help.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Anonymous	Not enough funding to Regional Centers in California to adequately handle the volume of incoming calls for those seeking early intervention services. Funding is very inadequate for family support resource centers. A dollar amount the same as 20 years ago does not work as expenses increase and the number of families needing to be served has skyrocketed. These family resource centers help with child find and help assist families with the intake process so they are more comfortable in seeking early intervention services and following through on the therapies and services their child needs.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
DeAnna Parker, Parent/Professional	Services: Services (my opinion) tend to dwindle after 5th for our kiddos with ASD. I would like to see more services offered to the 10 year old and up age range. They wont stay children forever!!! Education: I could go on forever about this, but I will make this simple. I don't feel that there are enough opportunities educationally for kids with ASD who live in rural areas. Themes Addressed: Increase the accessibility and utilization of services; Improve the quality and availability of services within the educational systems
Rachel , Waterson	Its frustrating that a cause is not known because it allows the insurance companies to weasel out of paying for therapies because they consider it a mental health or behavioral issue rather than a physical disability. My son has fine motor issues too but no explaination or testing as too why it affects not only his speech but his motor skills too. Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Need for an adequately trained and compensated workforce to improve available services and service deliveryImprove the service systems and service models
Anonymous	MANY more autism trained service providers (especially for adults) and specific programs and classes for functional and social skills training are needed all across the country. These service providers and programs need to be affordable. Also, transportation needs to be made affordable and available for this population because so many can't/won't/shouldn't be driving, but absolutely need the services and programs interventions and treatments. Lastly, there need to be an increase in family and sibling support programs to help them understand what is happening and learn how to positively deal with living with a person with ASD. Families are extremely affected by having a family member with autism. Financially, emotionally, psychologically, physically, really ALL domains are at risk for damage if the supports are not in place to help families in crisis (or to help them avert crisis). Themes Addressed: The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Families need access to services to reduce the mental and emotional burden of caring for those with ASD; Need for an adequately trained and compensated workforce to improve available services and service delivery
Leslie Hollis	Focus should be in funding quality, research based services for all children. Many rural areas have NO qualified therapists for many milesThemes Addressed: Increase the accessibility and utilization of services; Improve the efficacy and cost effectiveness of services and service delivery
Anonymous	Our primary focus here should be in the huge disparity in access to beneficial services that provide respectful intervention. A primary focus should be in communication. All individuals on the autism spectrum should be able to have access to tools and therapies to support full self-expression. At this time, this is not a reality. There are not enough AAC options accessible to individuals. The expense can be astronomical if insurance does not provide these services. Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access; Disparities in access to services should be addressed
Erin Fallon, Teacher and Parent	Early intervention should continue past the age of three and should not be suspended due to the lack of funding. families depend on these services.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Cathy Peterffy, peterffy	To provide quality current care that is covered . I do not care to fight insurance companies and to fight schools to be held responsible despite having safeguard process which is completely inadequate.Themes Addressed: Increase the accessibility and utilization of services; The cost of services is prohibitive, and research and policies are needed to reduce these barriers to access
Diane Frillman	Not much. Public awareness does not create compassionate people to make friends with your children and interact in a natural and caring way. It is like we are cut off from the rest of the world. I had to explain to their teachers that Autism does not affect intelligence. However, I could never get through to them that children with Autism "DO IT TO LEARN IT." That is totally backward from the established way of teaching. Teachers were taught to learn the THEORY FIRST and then the practice and application. Not so, with children with Autism, they have to just jump in there and do it, and THEN they understand the theory. Many teachers do not understand that it takes AT LEAST two weeks to learn a habit or begin to loose a habit. It can take up to 4 months for children with autism to learn a task, habit, new behavior, etc., successfully, and that goes for bad behavior too. Most teachers simply to not have the stamina, love, and enthusiasm to teach Autistic children. And I might add, even the so called "Special Education" teachers give up too soon as well.Themes Addressed: The broader community needs to be better educated about ASD, to lead to better understanding and inclusion; Improve the quality and availability of services within the educational systems

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