A handful of organizations, like the Adult Autism Center in Murray, Utah, are leading the charge to help adults with autism receive services after age 21.
When students with autism or developmental disabilities turn 22 years of age, they are no longer eligible for special education services provided by their state. Young people often receive the bulk of their autism services in schools.
Government programs shift their focus from Applied Behavior Analysis (ABA), speech-language pathology, and occupational therapy services to programs on developing social, vocational, and functional skills. While these real-world skills are essential, for many people with autism, the shift away from ABA and other therapies can be premature.
“Everyone has the capacity to be a lifelong learner. Some may just require more support once they age out of the public school system,” Joe Nawalaniec, adult autism supervisor at the Adult Autism Center, told Autism Business News. “The adults we serve often show a regression in skills if there is a lapse in services. Like everyone, the individuals continue to develop skills throughout their lifespan and gain independence.”
The Adult Autism Center provides support for adults with intellectual and developmental disabilities by giving ongoing autism services that can help them reach their full potential and experience the highest possible quality of life. The center also partners with families to help their adult children progress and succeed in their personal goals.
Nawalaniec said the demand for adults on the spectrum to continue services after aging out of the public school system is “huge.” The center currently has over 200 individuals on its waitlist for its day program, which specializes in working with adults with autism spectrum disorder (ASD) or individuals with severe maladaptive behaviors.
“With the right support, the individuals we serve are able to continue developing the skills needed to increase their independence,” Nawalaniec said. “We receive 5 to 10 emails a week from people out of state wondering if we know of any services in their area.”
Spectrum and supply
Although the demand for continued autism services is high, Nawalaniec said there are very few programs in the country that serve adults on the spectrum.
That number gets even smaller once you look for programs that serve adults who are severely impacted by ASD and exhibit challenging behaviors. Nawalaniec noted that other providers are also specializing in this population. This list includes the Columbus Center in Salt Lake City, which primarily works with adults with level 1 (formerly high functioning) autism, the Ernie Els Foundation for Autism in Florida, which offers a program for adults on the spectrum, and the Teri Center in California which works with adults who ASD and other disabilities severely impact.
The lack of U.S. facilities assisting adults with autism is primarily due to a lack of funding. While Medicaid covers ABA therapy for children in all 50 states, the same is not true for adults across America.
“It varies from state to state whether or not Medicaid will cover ABA therapy for adults,” Nawalaniec said. “For example, Medicaid did not cover ABA services for adults until 2023. There is state funding for adults with disabilities, but the [assistance] rates tend to be very low, which leaves providers unable to offer the kind of support many adults with autism require.”
Funding and staffing are the primary challenges for the Adult Autism Center.
“There seems to be a lack of interest in working with adults on the spectrum or adults with disabilities in general,” he said. “We have a children’s center as well, and they get significantly more applicants than we do.”
The Adult Autism Center has been able to access additional funding through the Adult Autism Treatment Fund (AATF), a Utah-specific program that providers can access once they show evidence-based treatment.
“We’re very fortunate to have a large center where our clients feel safe and comfortable, and this wouldn’t be possible without the AATF funds and generous donations we’ve received from individuals in the community,” Nawalaniec said. “Without these funds, we would not be able to provide the high level of support that our clients require.”
Nawalaniec said he hopes Medicaid will cover ABA therapy in all 50 states in the near future, which would allow providers to hire additional staff and expand programs that can serve adults with autism. Until that day, he urged providers in states that do not fund adult services to work with state legislators to increase funding for adults or push Medicaid to fund adult ABA services.
Continuing behavioral health services for adults with autism is something Nawalaniec and the center see as a significant opportunity for providers to help individuals grow and prosper in adulthood and assist clients as they integrate into their communities and gain independence.
“It’s really awesome seeing our clients generalize skills across settings and achieve things that many thought they never could,” he said.
Catering to adults also helps open up new scheduling opportunities for operators. Many ABA and autism providers primarily serving school-aged children have to work around their school day. But this could leave time for many adults to receive services.
“Where can you access adults? Well, a lot of adults you can access during the day when the younger kids are in school,” Doug Moes, chief clinical development officer at The Stepping Stones Group, said at BHB’s INVEST 2022. “So [that’s] food for thought when you’re thinking about how to leverage your workforce.”
Boston-based Stepping Stones is an autism and behavioral health provider. It operates in 45 states. Its 8,000 employees serve more than 1,000 clients and 300,00 children annually.
