Only 1.1% of autistic adults who needed employment services received them in 2016, according to the Policy Impact Project in the A.J. Drexel Autism Institute’s Policy and Analytics Center.
Between 2008 and 2016, a new study from Drexel University’s A.J. Drexel Autism Institute found that an estimated 1.98 million autistic adults, representing 99% of those who likely needed employment services, did not receive support through Medicaid or the Vocational Rehabilitation Administration.
The study, recently published in The Milbank Quarterly, examined data from the Centers for Medicare & Medicaid Services as well as the Department of Education’s Rehabilitation Services Administration. The researchers analyzed the distribution of employment services among individuals with autism and those with intellectual disabilities.
“Employment is a crucial factor affecting the health and well-being of the approximately 5.4 million autistic adults in the United States, just as it is for individuals without disabilities,” stated Anne Roux, a research scientist and director at the Policy Impact Project in the Autism Institute’s Policy and Analytics Center (PAC), who is the lead author of the study.
In both Vocational Rehabilitation and Medicaid programs, the research team found that only 1.1% of working-age autistic adults who potentially need employment services are getting them. In 2016, around 4,200 autistic people were receiving services through Medicaid waivers, while nearly 18,000 were receiving Vocational Rehabilitation services.
Two employment services, Medicaid and Vocational Rehabilitation, offer different types of support for autistic adults. Medicaid provides long-term employment services, while Vocational Rehabilitation offers short-term services. However, between 2008 and 2016, Vocational Rehabilitation served eight times as many autistic individuals as Medicaid did. The difference in the number of people with intellectual disabilities receiving services from Vocational Rehabilitation compared to Medicaid was smaller, with three times as many individuals served by Vocational Rehabilitation.
Medicaid funded employment services for fewer autistic individuals, but its spending on employment services for autistic adults was more than double that of Vocational Rehabilitation.
However, total spending on employment services for autistic adults decreased by almost 30% among Medicaid enrollees but increased by nearly 400% among Vocational Rehabilitation service users over the same period.
“Public spending as a whole is going toward short-term employment services, even though many autistic individuals are likely to need some level of flexible, longer-term support throughout their working years,” said Roux.
The research team was surprised by the gaps in the capacity to provide public employment services.
“It is difficult for me to wrap my brain around exactly how few people are receiving public employment services,” said Roux.
Roux pointed out that autistic individuals do not have guaranteed access to support services for functioning and wellbeing after they finish high school. When special education services end, there is a “services cliff” – a gap in service eligibility – because there is no federal law that allows autistic adults to continue receiving the services and support they may need throughout their lives. The “services cliff” is worsened by very limited access to employment services. Even when services are available, the process of accessing them is often very challenging, preventing individuals from reaching their potential and trapping them in a life of poverty and increased healthcare costs.
The research team aimed to explore how employment services for autistic adults are funded in the U.S. However, they found that there is no publicly available data that tracks employment services for autistic individuals within the Medicaid and Vocational Rehabilitation systems.
“Therefore, the significant gaps in our ability to provide these public services are often only recognized through the stories of individuals who continually report that they cannot access the assistance they require, or by individuals seeking to improve the delivery of these services,” stated Lindsay Shea, DrPH, leader of PAC and the principal investigator for this research. “These findings validate those experiences and underscore the importance of funding for these services.”
As a result, the research team suggests that there is an urgent need for policy changes to enhance the employment services systems in the U.S.