“REPOSTED WITH PERMISSION. ORIGINALLY APPEARED AT THE POLICY IMPACT PROJECT. AUTHORED BY ANNE ROUX AT www.policyimpact.org
Renewing Autism CARES: Addressing Critical Needs for Autistic Individuals and Families
The federal Autism CARES Act, which has existed for the past 17 years, is due for renewal by September 30, 2024. This law authorizes funding and guidance for autism surveillance, training, and research programs. Before these programs began in the early 2000s, there was little to no policy that directly addressed autistic people’s needs. Thanks to the establishment of the CDC’s Autism Developmental Disabilities Monitoring (ADDM) program, research and policy activities have grown exponentially, as ADDM quantified the dramatic increase in autism prevalence – now 1 in 36 children.
Findings from scholarly activity, and the aging of the earlier cohorts of autistic youth, have generated new thoughts regarding the focus of Autism CARES Act investments. In recent months, leading autism advocacy organizations have issued statements and provided testimony with recommendations for updates to the Autism CARES Act.*
Recommendations from these organizations include:
Some proposals also call for restructuring how recommendations for autism research funding are made and how autism policy is coordinated.
Our own services research at the Policy and Analytics Center receives funding through the Autism CARES Act. This funding is critical because services research, which focuses on services that are needed and used by autistic people, has always been allocated less than 10% of autism research funding. This means there is limited research funding focused on improving people’s functioning and quality of life. We have used this funding to advance understanding of the needs of autistic transition-age youth, the needs of autistic individuals who have been historically under-represented in research, and physical health issues common among autistic people. This funding also partly supports publication of the National Autism Indicators Reports which advise decisionmakers and advocates on how autistic individuals and their families are faring. As such, we are uniquely positioned to speak to how the Autism CARES Act could better address the needs of autistic transition-age youth and adults.
Our recommendations:
- We concur with the need for increased services research and policy initiatives focusing on:
- autism care, particularly in the areas of adult diagnosis, which is often prohibitively expensive yet required for program eligibility; mental health; and delivery of physical health services in ways that are appropriate for the sensory and cognitive needs of autistic individuals
- the communication needs of non-speaking individuals
- daily life challenges of autistic adults, including accommodations for sensory needs
- an emerging crisis stemming from limited systems-level capacity to support autistic individuals as they age, particularly those who have aging care partners
- We concur with the need for research to improve the system of care for autistic individuals who require round-the-clock support (both long-term and intermittent, depending on people’s needs); and we add the need for research to also improve the system of care for autistic individuals who do not meet eligibility requirement for care given absence of a discrete intellectual disability (but who often have severe and persistent mental illness that interferes with functioning).
- We further recommend research and policy focusing on:
- Effective supports (e.g., financial, respite, training, emotional) for families who are the primary providers of care for autistic people who cannot live on their own, or who cannot find or fund accessible and safe living arrangements in a place of their own. These needs are exacerbated by long wait lists for Medicaid home- and community-based services, a significant shortage of direct support workers, and difficulty finding affordable housing and funding for rental assistance.
- Understanding of capacity and efficacy of public health insurance mechanisms which are the primary funding source for care of autistic individuals, including investigation of the large numbers of young autistic persons receiving dual Medicaid-Medicare benefits.
- Cross-system capacity to deliver services and supports in the areas of employment, housing, and planning for the transition into adulthood.
*We reviewed recommendations from the Autism Society of America, the Association of University Centers on Disability, Autism Speaks, and the Autism Science Foundation.
