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