The U.S. Department of Health and Human Services released its 2022 Report to Congress on Supportive Services for Individuals with Autism. Along with employment and education issues, the report covers supportive services, such as occupational, behavioral, and speech therapies, that are covered by Medicaid, private insurance, or self-pay. The report also addresses disparities in services that exist among various communities.
Recent changes enacted through the Home and Community Based Services (HCBS) Rule expanded Medicaid coverage of services to Autistic children and adults. Many services that were previously considered optional for states to include in Medicaid coverage are now mandatory. For example, many state Medicaid programs did not cover outpatient services, such as occupational therapy, physical therapy, and prescriptions. This led to health disparities for families and individuals that did not have financial means to pay for services out of pocket. These outpatient services are more cost-effective for Medicaid to cover than the same services provided in institutional settings. Furthermore, outpatient services are more person-centered, allowing children and adults to receive services while living in their community, rather than segregated in hospitals or other care facilities.
Some HCBS Medicaid waivers permit family members to be paid as caregivers. This expands access for individuals and families living in areas with fewer service providers, while alleviating the financial burden of having a parent or family member give up employment to care for an Autistic loved one.
When Autistic adults age out of service systems provided by school districts and other programs targeting children (a phenomenon known as “the service cliff”), many Autistic people still need supportive services to live independently, find employment, raise families, and fully participate in their communities. Unfortunately, estimates show that approximately 26 percent of young autistic adults receive no supportive services to help them gain employment, continue education, or live independently. Autistic adults currently have the lowest rate of employment among people with disabilities (58 percent), which significantly reduces access to healthcare coverage and other benefits provided by employers. The risks of living without supports include unemployment, underemployment, financial vulnerability, homelessness, and even a shortened lifespan.
Another significant barrier Autistic children and adults encounter is the long waitlists for both diagnosis and services. The average wait time for both is approximately 2 years, which means that individuals are waiting an average of 4 years from initial referral to receiving supported services. The delay is disproportionately longer for additionally marginalized groups. The report cites research findings that Black, Indigenous, and other children of color are diagnosed, referred, and screened later than their white peers, resulting in delay of services.
Though the gaps and delays in access to services continue to be a significant barrier, the expansions in services paid for by Medicaid have allowed many individuals and families more options.
Individuals currently covered by Medicaid may now have access to a wider variety of services including:
- Home health care such as skilled nursing care; occupational, speech, and physical therapy; and durable medical equipment
- Personal care (dressing, bathing, toileting, eating, transferring from a bed/chair, etc.)
- Assistance with self-help, socialization, and adaptive skills
- Day habilitation services, adult daycares, and senior centers
- Home-delivered meal programs
- Transportation
- Home safety assessments and home repairs and modifications
- Supported employment services
If you are currently covered by Medicaid, check with your state for available services and coverage. You can also advocate for eliminating long waitlists for services by:
- Submitting an op-ed to your local paper
- Contributing to disability advocacy organizations
- Contacting your state legislators, urging them to support legislation that will improve wait times for services for people with disabilities covered by Medicaid’s Home and Community-Based Services (HCBS) waiver.
