One in every 59 children are on the autism spectrum, yet residential support is currently available to only one in 498 of the population. There needs to be more funding and research into solving the challenges of adults with autism and their growing need as they age out of federally funded programs and into unknown territory related to housing and supports.
Autism in adulthood research is critical to understanding the range of support autistic people need to thrive; who is falling through the cracks, what and why certain models have better outcomes, and how will we meet the demand in the near future. Yet less than 2% of autism research funding goes to adult issues.
What is IACC?
The recently reauthorized Autism CARES Act mandates research funding and coordinating of the many federal agencies be guided by the Interagency Autism Coordinating Committee (IACC), a federal advisory committee. IACC is comprised of both federal officials and public members which can include: autism self-advocates, family members, advocacy organizations, and community professionals. IACC creates a forum for public discussion on issues related to autism and in turn provides advice, strategic planning and recommendations to NIH and HHS regarding issues related to ASD.
When announcing appointees for a past IACC committee, former HHS Secretary Mike Leavitt said:
“This important committee will play a key role in coordinating autism research, services, and education related to Autism Spectrum Disorder. Its members bring to the committee a wide range and great depth of expertise, including research and program administration, advocacy and personal experience with the condition.”
What is the Autism CARES Act?
The primary source of federal funding for autism research is from the Autism CARES Act. Autism CARES Act became a law in 2006 as the Combating Autism Act. It has since been renamed and reauthorized in 2011, 2014, and most recently in September 2019. Autism CARES Act supports and requires the existence of the IACC and its strategic plan. IACC is given the responsibility to advise on federal autism activities. The Autism CARES Act of 2019 authorized the expansion of the IACC and more than $1.8 billion in funding towards autism research for adults and children over the next five years. This $1.8 billion includes annual funding for the National Institutes of Health (NIH) at $296 million, the Centers for Disease Control and Prevention (CDC) at $23.1 million, and the Health Resources and Services Administration (HRSA) at $50 million.
IACC Hosts Housing Workgroup
Hearing over and over again in public comments about how people struggle to access housing and residential supports, IACC hosted a Housing Workgroup convened in July 2019 with the purpose of: Addressing the Housing Needs of People on the Autism Spectrum. The goal of this most recent working group was to examine and discuss a wide variety of housing options and service models for people with autism that ultimately enable autistic individuals to achieve person-centered outcomes.
The AHN’s, Desiree Kameka was invited to speak on housing issue trends and insights she has learned from the decade of launching MHAF’s housing programs. She shared an overview on the challenges adults with autism and their families face, but also hope that local communities are rising to the task of creating more opportunities.
In response to the reauthorization of the Autism CARES Act, in February 2020, 87 organizations from across the nation, led by the Autism Housing Network (AHN) in partnership with First Place Global Leadership Institute, co-signed a letter to IACC leadership, strongly encouraging the committee to prioritize autism research to impact challenges faced in adulthood as identified in their previous strategic plan:
- Respond to Question 5 of the 2017 IACC Strategic Plan, “What Kinds of Services and Supports are Needed to Maximize Quality of Life for People on the Autism Spectrum?” which received only 5% of research funding
- Respond to Question 6 of the 2017 IACC Strategic Plan, “How Can We Meet the Needs of People with ASD as They Progress into and through Adulthood?,” which received only 2% of research funding
- Continue the IACC Housing Workgroup
The joint sign-on letter went on to state, “We believe innovative housing models like the properties and their representatives who spoke at the last IACC Housing Work Group, ‘Addressing the Housing Needs of People on the Autism Spectrum’ on July 23, 2019, must be studied as they provide evidence that the built environment combined with technology, individualized service delivery, and fostering of integration with the broader community, may deliver better outcomes for the broad neurodiverse population in a more cost effective manner.
Unfortunately, barriers to innovation exist. Due to lack of research, current policy and regulations regarding federal and state funding streams are based largely on ideology rather than evidence-based practice.”
Read letter and see the Sign-on Organizations: http://bit.ly/37mzrvt
I hear about all kinds of efforts for “raising awareness,” and how to “learn more,” and workshops to “educate” the public. OK, great. However, there is nowhere for my teen to go when he can’t live at home anymore. Lots of lovely looking projects on websites for people who are in “transition” to independent living. What if they are not in transition, but need supportive housing and daily management forever? Then all of these projects have lovely success stories, and a donate button, but never any information on how one gets in. Some I have contacted respond that the fees are in the realm of only for the well-heeled. So while it’s great that everyone wants to do another study, or hold workshops or have events to make everyone “aware,” we aging parents already know what is going on. We are advised to “seek support,” and know “we are not alone.” Yippee. I’m not alone. Now what? So until you can tell me what I am supposed to do, I’ll just say hurrah for the people who can pay, or who have kids who can learn to be independent. That’s not my kid. So if efforts are on raising awareness, I would say our kids have a very long wait for nothing.
I am in a very similar situation as the first person who commented, except I have two young, adult sons with Autism, ADHD and depression. I have been trying to put together a plan for when I am no longer here, which includes getting them into housing before I’m gone to help them learn to live without me and I cannot find any housing options that have less than and 8 year waiting list, but that is low income housing. I cannot find any specific housing where supports for people on the spectrum are incorporated. I am really worried as I am aging and have heart disease.
I am sorry to hear of your situation. It can be so difficult.
Have you had a chance to look through the AHN Housing Directory? http://www.autismhousingnetwork.org/housing/
Or Resources that can be filtered by topic or objective (assistance with living expenses OR person-centered planning tools): http://www.autismhousingnetwork.org/resources/
We also offer consultations to help more individually: http://www.autismhousingnetwork.org/schedule-30-minute-consultation/
Best of luck to you!
My niece is almost 27 and still lives with her father. Since leaving the structure of H.S., she is no longer thriving as there is not many options for her day to day. She is on the severe end of spectrum and there are no living options for her. Her mom is no longer in the picture. God help her if something happens to my brother. Its a shame. We have known about the autis increase for years, but verylittle has been done to address the adult population. Did folks think that all these kids wouldnt become adults? I have tried for years but gave up because all the info was child centered. Focus groups, meetings, donations oh my! When is someone going to get there hands dirty and start building affordable, nice communities staffed with appropriate educated professionals instead of winging it employees/aids? This has been going on way too long and is sinful we cant help this adult population. There seems to be money.for everything else. Frustrated beyond belief!
My adult son with asperger’s would like a roommate to share the cost of living. He needs a roommate with responsibility enough to faithfully share a monthly cost. My son ,like so many others is unemployed. I, his fixed income mother, pays the full cost of everything . I want him to learn to live independently. The need for shared housing is a must.
I have a 24yr old son on the spectrum who will need some support services when living independently.
I never thought that I’d have such an amazing son. He has a very long history in working in customer service, but he has high functioning autism/ adhd. I realize that there are other alternatives out there. So, I am encouraging my son to rest for a while, and let Mon take the wheel. He has not worked for a month now, but will soon receive unemployment. He and I are seeking a specialist to give him a diagnosis. We will know where to go from there. We are also seeking programs and housing that will assist him in independent living. Feel free to contact me if you have any information. I appreciate you. Thank You!
I am interested in your program. I have adult high performance autism/adhd. I would like to look more into your program.n I believe you may have what I need. Thank You!
So glad to hear your interest. We are happy to help. I suggest clicking through our website particularly in our Resource Directory http://www.autismhousingnetwork.org/resources/. Let us know if you need anything else!
I am a parent of a 23 year old young man on the Autism Spectrum. I am very interested in participating in the discussion about housing options for our young adults with Autism.
Please let me know how I can become involved.
Thanks for your interest! The Coalition for Community Choice is our advocacy program if you would like to have more information on policy and how to help. We post on our facebook page: https://www.facebook.com/CoalitionforCommunityChoice/ or you can sign up to get the CCC Newsletter: http://www.coalitionforcommunitychoice.org/join-ccc/
Really can’t wait to see what happens