A Place of Their Own: Residential Services for Soon-to-Be Adults with Autism
An unprecedented number of families will soon watch their children with autism leave school and flood the adult disability system. Up to a half million children with autism will reach adulthood in the next decade, according to estimates.1, 2
These children, the first wave of the so-called "autism epidemic," will enter a disability support system already under strain, according to a journal paper co-authored by Peter F. Gerhardt, Ed.D.,chair of the Organization for Autism Research's Scientific Council. The influx of newly-minted adults represents a "looming crisis of unprecedented magnitude for adults with autism, their families, and the ill-prepared and underfunded adult service system charged with meeting their needs," the paper said.3
Across the nation, adults with autism spectrum disorder (ASD) encounter difficulties finding housing and other services tailored to their needs. They face "long waiting lists for subsidized community-based services," according to the U.S. Interagency Autism Coordinating Committee (IACC).4
A 2009 study reported that about 88,000 people with developmental disabilities were on state waiting lists for housing services.1 And numbers continue to climb. "There are states that have waiting lists of eight years or more before they can provide services," said Steve Muller, president of the National Association of Residential Providers for Adults with Autism.
Less research on adults with autism
Research on adults with autism has taken a back seat to children's issues. As the number of children diagnosed with ASD grew rapidly in the 1990s, researchers focused attention on early diagnoses and interventions. They have devoted "less attention to issues concerning adults with ASD," according to the Institute on Community Integration at University of Minnesota.5
"We would like to see increased research on adults with autism, particularly on quality of life issues," said lead author Jennifer Hall-Lande, Ph.D.
In a policy paper, the Autism Society of America predicted that many parents will experience a shock when their children leave school and enter the adult system. Every child with a disability is entitled by law to a free, appropriate education from birth to 21. Public schools must provide educational and therapy services based on a student's needs.6
Once someone reaches adulthood, however, the service system changes dramatically. Adults don't automatically get services just because they need them. They get them when their state has enough funds to pay for them. They also may find themselves dealing with multiple agencies for vocational, day, residential and health care services, rather than just one organization.
Most young adults live with parents
Due to a "lack of focused, coordinated, well-funded services," many youth and young adults with ASD must depend on relatives and programs such as welfare and Medicaid.7
One study reports that adults with ASD are more likely to "live at home with family" and "less likely to live independently" than adults with other developmental disabilities. Another study found that almost 80 percent of people with ASD ages 19 to 30 live with parents or guardians.8, 9
As parents grow older, these living situations may become more difficult for families, experts say. "It takes a toll," Dr. Gerhardt said in an interview with IAN.
Residential services may vary by area, but they generally include options such as:
- Staff support provided in the client's home, which could be the family home or a home the client rents or owns.
- Living with a few other adults in a home provided and staffed by a disability agency.
- A farmstead, a working farm for adults with disabilities found in some rural areas.
- Larger residential-care facilities.
Many families rely on government Medicaid waiver programs to pay for adult services, including residential support staff. The federal government adopted the waiver in 1981 so states could pay for residential and other services in communities, rather than institutions. With federal oversight, states create their own waiver rules.
States generally require adults to have a certain disability, demonstrate a need for support services, and have financial need.5 Many services are available only to people who need the high level of care typically found in institutions.4
Most states require people to have an IQ score below 70 to receive waiver services,5 which could disqualify many children with ASD when they reach adulthood. Experts considered intellectual disability to be common among older generations with autism, but it is less so among the younger generation. The Centers for Disease Control now reports that a majority (62 percent) of children with ASD do not have intellectual disability.10
Nonetheless, research shows many people with autism still need help with communication, community living and social skills,5 which may affect their ability to live independently.
Parents can take steps now to help plan for their children's future needs. Where possible, they should apply to their state developmental disability agency before their children reach adulthood, said Diane Dressler, program director at the Maryland Center for Developmental Disabilities. Parents also should collect paperwork that will be needed for their children to apply for federal Supplemental Security Income benefits at age 18, she said.
Some parents want to bridge the gap caused by long waiting lists. "We're seeing more families trying to band together to buy a property where their soon-to-be adult kids would reside," said Ian Paregol, executive director of Community Services for Autistic Adults and Children in Maryland. Those families plan to purchase residential support services themselves or through waiver programs, he said.
Legislation that would help parents save for adult disability services tax-free has been pending in Congress since 2011. The Achieving a Better Life Experience (ABLE) Act would allow parents of children with disabilities to save for their future expenses, just as people save for other expenses through college savings or individual retirement accounts. "That's a step in the right direction," Mr. Paregol said.
Dr. Gerhardt said the school and adult systems should work closely together to improve the transition into adulthood. If students left school with jobs and better community living skills, they would require less expensive support services as adults, he said.
Another challenge is the lower levels of training and pay typically given to workers who provide support services to adults, Dr. Gerhardt said. "We need to professionalize the adult service system. It is harder to become a licensed manicurist than to become someone who works with an adult with autism. We bring in people with the least education and smallest knowledge base and pay them the least amount of money," he said.
One possibility is to put residential programs at universities; graduate students in disability-related fields could provide support services to adults with disabilities, he said.
- Urban Land Institute Arizona, Southwest Autism Research & Resource Center, & Arizona State University (2009). Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders. Resnik, D. D. (ed.).
- Goehner, A. L. (2011, April 13) A Generation of Autism, Coming of Age. New York Times. Retrieved from http://www.nytimes.com
- Gerhardt, P.F. & Lanier, I. (2011) Addressing the Needs of Adolescents and Adults with Autism: A Crisis on the Horizon. J Contemp Psychother 41:37-45. View abstract.
- U.S. Department of Health and Human Services Interagency Autism Coordinating Committee (2010). The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research. Retrieved from http://iacc.hhs.gov
- Hall-Lande, J., Hewitt, A., & Mosely, C. R. (2011). A National Review of Home and Community Based Services (HCBS) for Individuals with Autism Spectrum Disorders. Policy Research Brief 21(3) 1-11.
- Autism Society of America (2007). Position Paper on The National Crisis in Adult Services for Individuals With Autism. Sullivan, R. C. Retrieved from http://www.autism-society.org/
- U.S. Department of Health and Human Services Interagency Autism Coordinating Committee (2005) 2005 IACC Autism Spectrum Disorder (ASD) Services Roadmap. Retrieved from http://iacc.hhs.gov
- National Core Indicators of the National Association of State Directors of Developmental Disabilities Services and the Human Services Research Institute. (2011). NCI Data Brief: What does NCI tell us about people with autism? – An update. Retrieved from http://www.hsri.org/
- Easter Seals and Harris Interactive. 2008. Living with Autism Study. Produced in cooperation with the Autism Society of America (ASA). Retrieved from http://www.easterseals.com.
- Centers for Disease Control. Retrieved from http://www.cdc.gov/