Fifty years ago, President Lyndon B. Johnson signed into law legislation establishing the Medicare and Medicaid programs to serve as a basic health insurance program for lower-income children and families, persons with disabilities, and other groups. This anniversary provides an opportunity to reflect on the evolution of the Medicaid program that has enabled individuals with autism to access critical services and live more independently in their community.
Medicaid is a vital source of health insurance for many individuals with autism, serving as the primary source of health insurance coverage for one-third of all American children with autism; including secondary insurance coverage, one-half receive Medicaid benefits.
For adults with autism, Medicaid serves as a vital source of funding for Long Term Supports and Services (LTSS) that allow individuals to live independently. When enacted, Medicaid LTSS services were provided mainly in institutional settings. Due to the landmark Supreme Court decision in Olmstead v. L.C., Medicaid LTSS has evolved over time to provide services in more integrated community settings.
The Olmstead decision mandated an end to segregating individuals with disabilities and required states to provide services, including Medicaid, “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” Olmstead triggered the movement away from institutions to developing supportive and inclusive community services that allow people with disabilities to have control over where they live and how they live. Over the past several decades, over 200,000 people with intellectual and developmental disabilities have moved into more integrated community settings. As the primary payer of LTSS, Medicaid continues to play a critical role supporting adults with autism.
A recent victory for the autism community came in the form of ABA therapy coverage through Medicaid’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) services, which cover Medicaid-eligible children up to the age of 21. In 2014, the federal government directed states to cover all medically necessary treatment for autism through their Medicaid programs. In cases when ABA is determined to be medically necessary for children with autism, it must now be covered by Medicaid’s mandatory EPSDT benefit.In particular, Medicaid Home and Community-Based Services (HCBS) waivers provide flexible residential and day supports that help adults with autism live fulfilling lives as independently in the community as possible. The HCBS waiver program allows states to receive federal matching funds for providing a range of services and supports - including a wide range of residential services, family supports (like respite) and day activities including supported employment. Medicaid funding for HCBS programs is critical in implementing the Olmstead decision to end segregation and provide services in the most integrated setting.
In the next ten years, an estimated 500,000 youth with autism will enter adulthood, aging out of the supports and services provided under the Individuals with Disabilities Education Act. The needs of individuals with autism doe not end with adulthood. However, federal requirement for providing supports and services does. Unfortunately, unlike other Medicaid benefits, HCBS waiver enrollment can be capped, resulting in waiting lists for critical residential and support services. For the thousands of individuals with autism aging into adulthood each year, this limited HCBS capacity puts their independence and well-being at risk.
In 2014, Autism Speaks launched a Housing and Community Living Initiative that works to increase access to HCBS, increase the capacity of HCBS providers to serve adults with autism and increase available housing options. Autism Speaks staff is working with our volunteer advocates and other advocacy organizations to eliminate waiting lists for Medicaid residential supports and services.
As this initiative rolls, we will keep everyone updated with the latest developments. You can learn more about the initiative in Illinois, Florida and New Jersey, including how you can take action and voice your concerns and opinions to state officials.
Join us in observing this 50th anniversary by following @AutismSpeaks and @AutismVotes and stay up to date on all advocacy efforts in your state by signing up for Autism Votes HERE.