The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.
A one-pager about the The Home and Community-Based Services Access Act can be found as a PDF here.
The Autistic Self Advocacy Network (ASAN), The Arc of the United States, The Center for Public Representation, the National Health Law Program (NHeLP), and the Epilepsy Foundation commend Senators Brown, Hassan, and Casey and Representative Dingell, for the introduction of the HCBS Access Act (HAA), a bill that adds Home and Community Based Services (HCBS) as a mandatory Medicaid service. The HAA would build on the promises of the Americans with Disabilities Act and the Supreme Court’s Olmstead decision and provide the Federal Medicaid resources necessary for states to fulfill those promises, so that no people with disabilities or older adults are forced to live segregated from their communities.
Over the past year, COVID-19 has laid bare the real-life danger of congregate settings for people with disabilities and older adults, as infection and death rates in these settings have been catastrophic. At least 100,000 residents have died in nursing facilities and other institutions for people with disabilities. For disability advocates, this horrific news was not a surprise. Despite the deadly risks of congregate settings and the preferences of people with disabilities and aging adults to live in their own homes and communities with their friends and families, hundreds of thousands of people are on waiting lists for HCBS across the country. Medicaid has always had an institutional bias that requires states to cover congregate settings while leaving coverage of home and community-based services (HCBS) optional.
The HAA will change this. By making HCBS a mandatory Medicaid service, people with disabilities will have access to the services they need to live in their communities, without having to wait years and years for these crucial supports. The HAA will also give older adults, often forced into nursing facilities because of a lack of home care, access to the HCBS they need to age in place, something that the vast majority of aging adults want. The more than 850,000 people with disabilities and older adults currently on waiting lists would be eligible for services. In addition to supporting people where they desire to live, more wholeheartedly ending the institutional bias is cost-effective. The average cost to serve a person with a disability in a publicly-funded institution in one of the 36 states that still has them is $294,300 per person, per year while the average cost of a person served with Medicaid HCBS is $49,854 per person per year.
The HAA also provides a funding boost for HCBS. It supports states to build the infrastructure and capacity needed to serve people coming off of waiting lists, better support those already receiving services, and transition people with disabilities and older adults who want to live in the community out of dangerous congregate settings. This financial investment is absolutely crucial, especially as the pandemic-created recession slashes state budgets, putting broad swaths of services at risk. The HAA would help states and support state funded services.
The bill would also address the race and gender disparities that currently exist in accessing Medicaid HCBS and prevent the unnecessary institutionalization of Black, Indigenous and other people of color with disabilities and older adults. And the HAA would finally begin to address the HCBS workforce crisis, the essential and frontline workforce that provides services to people with disabilities and older adults is made up of mostly women—and women of color, in particular. The HAA would ensure that these workers receive a living wage.
As the country works to recover from the COVID-19 pandemic, the HCBS Access Act should be at the center of that recovery to ensure that people with disabilities can receive care and supports in their homes and communities.