40 Big Ideas
5. Home and Community-Based Services Make It Possible for People with IDD To Live, Work, and Fully Participate in Their Communities
In 1981, lawmakers created home and community-based services (HCBS) as an alternative to institutional care. Families and self-advocacy groups showed that community services cost less and had better results. HCBS helps people with disabilities in their daily lives. They help with job coaching, personal care, and much more. Medicaid has to fund services in institutions, but it limits services provided in the community. This means many people are on waiting lists to get services.
Home and community-based services, or HCBS, are critical supports that help people with disabilities live, work, and participate in their communities, from job coaching to nursing and behavioral supports to assistance with cooking, cleaning, and going out to events. These largely Medicaid-funded services offer an alternative to institutional care that costs the government less money and provides better living options.
For many years, institutions were the only option for people with intellectual and other developmental disabilities (IDD). When I (Evan) was born in the late 1970s, our family was told – like all families at the time – that the best thing would be to send me to an institution. The horrible abuses happening in institutions like Willowbrook were just becoming public. Families and people with disabilities were beginning to organize, demanding services in their own homes and communities.
Our parents refused this advice, and we joined the fight to create a different world for people with IDD. Read more about our family’s advocacy story .
HCBS is the result of advocacy! In the late 1970s, self-advocacy organizations, including People First, worked with The Arc and other family organizations to help families keep their children at home and assist people in institutions in moving back to the community. They showed policymakers that community services would cost less, create better outcomes, and make people happier.
The story of Katie Beckett, a girl with significant disabilities who couldn’t go home with her family from the hospital because Medicaid would only pay for institutional care, convinced President Ronald Reagan to change the Medicaid rules to allow waivers for care at home, creating the HCBS program in 1981.
HCBS has changed the lives of millions of people with IDD. Thanks to the Americans with Disabilities Act and the Supreme Court’s decision in Olmstead v. L.C. in the 1990s, people with disabilities now have a civil right to receive services in the community instead of institutions. Olmstead has driven states to expand HCBS. Every state now offers HCBS, and the vast majority of people with IDD receive services in the community.
Changes in HCBS over time reflect the changing expectations of people with IDD and their families. Congregate supports like group homes and day programs have made way for more individualized supports to help people live in their own homes, work in mainstream jobs, and participate in community activities. My (Evan’s) HCBS waiver helps me be independent. I have supports that help me live in an apartment with a friend. I have a job at the Georgia Aquarium, participate in community activities, and serve as an advocate. I recently stepped down from the Georgia Council for Developmental Disabilities after 12 years!
Yet our work to improve HCBS is far from over. We must work to change Medicaid’s institutional bias. States are required to provide institutional care, but they can limit the number of people who get HCBS, leading to large numbers of people being on waiting lists. As of 2024, more than 520,000 people with IDD were on waiting lists to begin or receive additional services, according to KFF, a nonprofit health policy organization. We need more funding, yet the recent bill cutting $1 trillion from Medicaid means we must now fight to prevent HCBS cuts. Finally, we must work to better support people with complex behavioral or medical needs in the community.
HCBS has been a game-changer for people with IDD. It helps me (Evan) live the life I want in my community. Our collective advocacy for HCBS has helped create the world our family dreamed of for people with IDD.