CLEVELAND, Ohio — The transition from high school to adulthood is a critical moment for young adults with an autism spectrum disorder, but new research from Case Western Reserve University suggests many of those individuals are struggling to access the services that could help them thrive.

Young adults with autism were receiving an average of 6.13 services such as medical care, mental health care, case management and speech and occupational therapy.

But researchers from the Jack, Joseph and Morton Mandel School of Applied Social Sciences found their caregivers felt they needed an average of 3.18 more services such as job training, social skills training or transportation, to help them live independently or enter the workforce.

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Those who were still in high school received an average of 2.5 more services than the young adults who already graduated. That reinforces the belief among experts that there is a “service cliff” after graduation, where individuals lose access to some of the services they had access to or qualified for while they were still in school, said Karen Ishler, a senior research associate at the Mandel School and the lead author of the study.

“Just because you have a diagnosis of ASD, it doesn’t automatically qualify you for services. It doesn’t mean you’re going to get services,” Ishler said. “For the average family out there, that just makes their lives much more complicated.”

The study in the Journal of Autism and Developmental Disorders focuses on 174 parents, grandparents or guardians of young adults with ASD. Over an 18-month period prior to the coronavirus pandemic, the researchers conducted interviews with the caregivers to learn what services they were receiving and what services they were unable to obtain.

Ishler worked with a team of researchers including David E. Biegel, a study co-author who is also the Henry L. Zucker Professor of Social Work Practice Emeritus at the Mandel School.

One of the researchers’ key findings is the fact that a Medicaid waiver, which provides funding for services so an individual with a disability can remain at home, was perhaps the single biggest factor in obtaining those services. On average, someone who had a Medicaid waiver received 2.8 more services than someone who didn’t, the study found.

The problem is that obtaining a Medicaid waiver isn’t easy. A 2016 study found there were more than 400,000 names on a waiting list for a Medicaid waiver, and they waited an average of four years to obtain one.

That’s a real issue, because services often play a key role in helping individuals with ASD find work and live more independently, the researchers said.

“It portends a lot of outcomes for the future,” Ishler said. “If you aren’t going to get connected to the appropriate (services) … then when you leave high school, you’re basically on your own.”

The “service cliff” could become even more of an issue over the next decade when 500,000 individuals with ASD are expected to reach adulthood. That will further increase demand on a system that is unprepared and underfunded, Ishler said.

The study was funded by the International Center for Autism Research and Education, through a Mt. Sinai Health Care Foundation catalytic grant, and a grant from the Mandel School.

The service cliff

Autism spectrum disorders are varied, and there is a wide range in the type and severity of the symptoms someone experiences. However, many individuals with ASD remain reliant on caregivers into adulthood; Ishler said they have the lowest rate of independent living compared to those with other developmental or learning disabilities.

Young adults with ASD often lose access to important services when they leave high school. Even those with a Medicaid waiver must be re-evaluated at that time, which could mean a loss of coverage or a gap where they’re not covered. A 2019 study found one in four individuals with ASD lost Medicaid coverage when they were re-evaluated, and fewer than half of them regained it within five years.

That critical transition from high school to adulthood is often confusing for parents and guardians of young adults with ASD, said Ilana Hoffer Skoff, the co-founder and executive director of the local nonprofit Milestones Autism Resources.

“I think families are struggling with the fact there is a lot of input for early intervention, there’s continuing input through the school years, and then there is a drop-off,” she said.

The Mandel School study found that 82% of the young adults with ASD were still living with a caregiver, and 41% were still in high school.

Among those who had graduated, just 47% were working. Another 31% were unemployed, while 21% were enrolled in postsecondary education or vocational training.

The study also found 93% of the young adults had at least one additional diagnosis, and 78% had a mental health disorder, intellectual disability or a serious medical condition.

The high unemployment and limited access to services like adult day care left many caregivers feeling overwhelmed. Many told the CWRU researchers their adult son or daughter with ASD spent most days at home, using the computer or playing video games, Ishler said.

“It’s just tough, because it’s not like these parents can really go to work 9-to-5,” Ishler said. “Some of these young people can’t really be left unsupervised.”

Addressing the issue

Years ago, caregivers struggled to find the resources and services they needed to help young adults with ASD. Today there are enough options, but caregivers often have trouble navigating the system and accessing them, Ishler said. What they really want is a roadmap that can help them figure out how to find and obtain services.

“(Caregivers) felt like they were completely lost,” Ishler said. “Almost as if you were trying to navigate New York City without a map.”

Because Medicaid waivers were so predictive of obtaining services, Ishler and her fellow researchers felt improving access to those waivers could be hugely beneficial for young adults with ASD.

In Ohio, individuals with ASD must apply for a Medicaid waiver that is available to anyone with a developmental disability. But Pennsylvania has a program that targets Medicaid waivers to adults with autism, and early data suggests that approach is effective, Ishler said.

Helping families and caregivers navigate that complex system is a core tenet of Milestones’ mission, Hoffer Skoff said. The nonprofit focuses on educating and providing resources to help individuals with ASD. Milestones also has a free help desk staffed by social workers who can put families and caregivers in touch with therapists, tutors, support groups and other services.

“We’re very fearful of people feeling like they’re isolated in this journey. That they have to do it all,” she said.

Ishler said the data from the Mandel School study shows how difficult it can be for families to access services, even in an area like Greater Cleveland that is home to world-class medical care and other resources. She hopes the study will help drive the conversation about the need to expand access to Medicaid waivers and other services that could help ease the transition out of high school and into adulthood.

“Rather than seeing a cliff, there should be a mountain of services available,” she said. “I do hope there’s a call to provide more support to these young people.”

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