In a new analysis of survey data from state Medicaid home care programs, KFF found that in most years since 2016, there have been nearly 700,000 people on waiting or interest lists for expanded home and community-based services (HCBS), with a total of 692,000 across 38 states in 2023 and waiting lists averaging three years.
People with intellectual or developmental disabilities make up almost three-quarters of waiting lists, with seniors and adults with physical disabilities constituting another quarter. People on waiting lists may not have access to increased hours of home care to support activities such as bathing, dressing, preparing meals and managing medication as well as increased types of community care, such as adult day care and supported employment, which are often designed to meet the needs of specific populations.
States can cap enrollment for these services, resulting in waiting lists (also described as “interest lists”) for expanded home care programs when demand surpasses the available slots. While these lists are an imperfect measure of unmet need, there are currently no alternative measures.
Home care waivers that allow states to offer these services have been in place since the 1980s, but their use increased after the Supreme Court’s Olmstead decision in 1999, which characterized the unjustified institutionalization of people with disabilities as illegal discrimination. As the 25th anniversary of Olmstead nears, people have cited waiting lists as one reason for continued discrimination based on disability.
Shortages of home care workers could worsen states’ waiting list times. Although states reported increasing provider payment rates and other efforts to bolster the workforce, challenges remain and some state policies for addressing these challenges ended with the conclusion of pandemic-era programs.
Another factor affecting waiting list volumes is whether states screen for Medicaid eligibility before adding people to waiting lists. Between 2018 and 2020, waitlist sizes for expanded home care programs fell by 19% nationally, largely due to eligibility assessments added to waiting lists. Today, all but six states screen their waiting lists for Medicaid eligibility.
Rules proposed earlier this year would require states to report the size of their waiting lists.