Services for people with autism spectrum disorders, including speech-language treatment, have primarily addressed the needs of those younger than 21. For those transitioning to young adulthood, services and supports are inconsistent or non-existent. Yet services such as speech-language treatment can play an important role in young adults' successful transition to employment, postsecondary education or training, independent living, and community participation.
But how do families find these treatments? And who pays for them?
"National, state and local policy makers have been working hard to meet the needs of the growing numbers of young children identified as having an ASD," says Paul Shattuck, assistant professor at the Brown School of Social Work at Washington University in St. Louis. "However, there has been no effort of a corresponding magnitude to plan for ensuring continuity of supports and services as these children age into adulthood."
Shattuck looked at rates of service use among young adults with ASDs during their first few years after leaving high school and found that 39.1 percent received no speech-language treatment or mental health, medical diagnostics or case management services. He found that overall rates of service use were 23.5 percent for medical services, 35 percent for mental health services, 41.9 percent for case management, and 9.1 percent for speech-language treatment. Their service use in high school, however, was 46.2 percent for mental health services, 46.9 percent for medical services, 74.6 percent for speech-language treatment, and 63.6 percent for case management.
These figures indicate that speech-language treatment in high school was provided at the highest rate of all reported services, but fell to the lowest rate of all services after leaving high school. Medical, mental health and case management services fluctuated as well, but not nearly as widely as speech-language treatment.
Shattuck acknowledges that "the ability to succeed at social interaction and communication is necessary for success in employment, post-secondary education, job training and community participation." Funding streams for adult services, however, rarely cover speech-language treatment. Shattuck contends that policies "yank away" an intervention that probably matters most in helping young adults with ASDs succeed in the community.
Because communication disorders are a hallmark of autism, speech-language treatment should be provided as teenagers move into adulthood, when training, jobs and community interaction may place greater demands on communication skills.
Several state initiatives that address the needs of adults with autism are included in the "Report on State Services to Individuals With Autism Spectrum Disorders (ASD)" [PDF] prepared for the Centers for Medicare and Medicaid Services ASD Services Project.
Pennsylvania's Adult Community Autism Program provides adults with autism and their families a range of comprehensive services and supports through a managed care delivery system that includes, among a broad array of medical services, audiology and speech-language pathology services. To qualify, the person with autism must be at least 21 and eligible for medical assistance.
The Autism Society of America advises using vocational rehabilitation services, which may include speech-language treatment, and that people with autism should work with a vocational rehabilitation counselor to identify and pursue additional training or to secure employment (including supported employment) in a field of interest.
"Planning Life After High School for Students on the Autism Spectrum: A Guide for Tennessee Families," [PDF] a publication prepared by the Vanderbilt Kennedy Center and funded by a U.S. Department of Health grant, includes information on Supplemental Security Income and vocational rehabilitation. SSI provides monthly payments to people with disabilities who have limited income and resources, and almost all recipients are eligible for health coverage under Medicaid (although Medicaid often covers speech-language services for adults at a much lower level than for children). SSI eligibility is often a gateway to a variety of transition services for students with disabilities. Income eligibility for SSI differs according to the age of the individual, so a child denied SSI may be eligible at 18. Through the use of SSI work incentives, a student can hold a paying job, increase income without loss of cash benefits or eligibility for other benefits such as Medicaid, offset expenses that result from work, and save for future education and training or to start a business. Incentives help students maintain necessary SSI benefits until they are self-sufficient.
The Vanderbilt Kennedy Center publication recommends inviting a vocational rehabilitation representative to participate in a student's Individual Transition Plan, in person or by phone. Eligibility for vocational rehabilitation includes a physical or intellectual disability that affects two or more functional limitations and that results in a substantial barrier to employment. Individuals may receive transition services such as assistive technology evaluations. The person receiving the services can use the assistance to prepare for, obtain or keep employment.
States may offer variations of these types of special programs. Clinicians should check state Medicaid plans or departments of health for similar services.