State-provided disability services often fail to meet the needs of adults with autism, according to a new report finding many with access to supports don’t have any regular daytime activities.
Only 14 percent of adults with autism who receive state supports have a paying job in the community. Meanwhile, 1 in 4 people in this population have no structured activities during the day.
The findings come from a new National Autism Indicators Report produced by Drexel University’s A.J. Drexel Autism Institute. The annual publication offers a look at the experiences of those on the spectrum as they transition to adulthood. This year’s report is focused on the estimated 111,000 people across the country who receive developmental disability services from their state.
“Billions are spent each year on services for people on the autism spectrum,” said Paul Shattuck, director of the A.J. Drexel Autism Institute’s Life Course Outcomes program, which produces the annual report. “Relatively little is spent trying to understand the types and amount of services people need, as well as the services they actually end up getting or the outcomes of them.”
Researchers looked specifically at 3,520 individuals with autism ages 18 to 64 who were no longer in high school and participated in the 2014-2015 National Core Indicators Adult Consumer Survey. A project of the National Association of State Directors of Developmental Disabilities Services and the Human Services Research Institute, the survey includes interviews with people with disabilities receiving at least one disability service from their state.
Even though the individuals surveyed used an average of six different state services, the report found that “families are shouldering a lot of care.” Nearly half of those studied lived with parents or relatives and 38 percent had no paid, in-home supports. A quarter did not believe they were getting all the supports they needed.
“Many are truly dissatisfied with their quality of life and the difficulties they have finding services that could help improve their situation,” said Anne Roux, a Drexel researcher who worked on the report.
Still, researchers acknowledged that those with services are not representative of all people with autism. Many adults on the spectrum either don’t receive or don’t qualify for state disability supports.
“Some states don’t provide developmental disability services for adults with autism unless they also have intellectual disability,” Roux said. “These policies ignore the fact that many with autism are cognitively-able but still have tremendous challenges navigating the social, organizational and communication demands of adult life.”
The findings highlight the gaps that persist in state policies and services, the report authors indicated.
“It’s critical that we identify, evaluate and promote state policies that appropriately recognize and adequately meet the unique needs of adults with autism spectrum disorder who use, or need to use, state developmental disability services,” Shattuck said. “Without that we will continue to struggle to improve the quality of life for those who use these services.”