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Adults With Autism: Supporting Quality of Life

When you think of a person with autism, is the image that comes to your mind one of a child or an adult? Just like all of us, most people with autism will spend much more of their lives as adults than as children. For those individuals who need significant care and supports, the transition into adulthood often is full of unknowns. What kinds of services do adults with autism need?

There are as many answers to that question as there are adults with autism. For those adults who need long-term supports and services, empowering them to have a high quality of life involves supporting them in doing activities of their choice, spending time with people of their choice, and doing work that they enjoy.

Chosen activities

Chances are, you had to do things as a kid that you didn’t want to do — because someone else was in charge. The beauty of being an adult is that you can, within limits, do what you want. (Of course, we give up some of that autonomy when we make certain decisions and take on responsibilities, but that’s a different conversation.)

For the most part, we get to choose whether we want to go bowling, swimming, or golfing during our free time. Many adults with autism who require services to access activities in their communities don’t get to make that choice.

All over the country, organizations that provide services to people with intellectual and developmental disabilities, including autism, face the daily challenge of providing individualized, person-centered services despite a shortage of funds and direct support professionals. Because hiring and retaining DSPs is difficult — and getting more difficult in the tight labor market — many service providers simply can’t find the staff they need to give everyone they serve the opportunity to do what they want to do, when they want to do it.

Perhaps nothing is more important to the quality of life for adults with autism and IDD than having well-trained, experienced DSPs — and enough of them to give each individual the opportunity to make their own choices regarding how they spend their time.

Chosen community

IDD service providers have a mandate from the federal government and the US Supreme Court to strive for community integration of those they serve. Medicaid’s Home and Community Based Services (HCBS) program won’t provide funding for housing in settings it considers segregated. Most states had interpreted guidelines from the Centers for Medicare and Medicaid Services (CMS) to mean that HCBS dollars could not support housing where more than three or four residents have disabilities.

Just last month, CMS issued new guidance regarding HCBS and its definition of community-based. The guidance is still being interpreted, and different states may come to different conclusions about its meaning. However, it does appear that the guidance opens up the possibility of HCBS funding some housing options that had been considered segregated, such as intentional communities and specialized apartment complexes. Self-advocates have expressed concern about the new guidance, while some parent groups, especially those concerned with the well-being of individuals with significant disabilities due to their autism, have cheered the change.

How the new guidance plays out in states and communities remains to be seen.

Employment and ABA services for adults

Nearly half of 25-year olds with autism have never held a paying job. There are efforts all over the country to develop employment opportunities for adults with autism and other forms of IDD – from hydroponic farms to coffee shops to digital arts and animation. Some individuals enjoy working in sheltered workshops, while others long to find a job in their communities but cannot due to lack of support.

In addition to the shortage of DSPs and job coaches, adults with autism who still need to develop important skills before trying to enter the workforce face another obstacle. Many cannot access one form of therapy that excels in teaching such skills — applied behavior analysis.

Almost all states have mandates requiring insurance companies to provide ABA therapy to children with autism. Those who have Medicaid can get ABA coverage under the EPSDT provision of the Medicaid law until the age of 21. But there are many, many adults who have challenges with skill acquisition and could benefit from ABA, but state mandates and Medicaid don’t cover the service for them.

Task analysis and ABA can be used to teach a wide variety of daily living and job skills. Peter Gerhardt, Ed.D. outlines some interesting ideas in this presentation, including how supervisors can use ABA strategies to develop accommodations that increase the success of their employees with autism. Video prompting based on task analysis is also a great tool for teaching new skills to adults.

Every year, about 50,000 teenagers with autism become adults. There has been little research into the needs of adults or what supports best enable them to thrive. For many adults with autism who have significant support needs, their ability to access person-centered services and necessary therapies will be the determining factors in the quality of their entire adult lives.

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