HCBS Programs Struggle with Long Waiting Lists

A recent analysis by the Kaiser Family Foundation (KFF) reveals that a significant number of states are maintaining waiting lists for Medicaid Home and Community Based Services (HCBS) programs, hindering individuals’ access to essential  services. The report, based on survey data from state Medicaid programs, indicates that since 2016, nearly 700,000 individuals have been on waiting or interest lists for expanded HCBS, with 692,000 people currently awaiting services in 38 states in 2023. Alarmingly, the average waiting period spans three years.

The waiting lists predominantly consist of people with intellectual or developmental disabilities—who make up nearly three-quarters of the total—while seniors and adults with physical disabilities make up the remaining quarter. People on these lists face barriers to increased hours of essential supports, including activities such as bathing, dressing, meal preparation, and medication management, as well as various types of community care, including adult day services and supported employment.

States implement waiting lists when the demand for HCBS surpasses available slots due to capped enrollment. While imperfect, these lists currently serve as the primary measure of unmet need, and there are no alternative measures available.

Medicaid waivers to provide home and community-based services gained prominence after the Supreme Court’s Olmstead decision in 1999, in which the Supreme Court held that the unjustified institutionalization of people with disabilities is a violation of the Americans with Disabilities Act. However, the growing number of waiting lists highlights ongoing concerns over the availability of home and community-based services.

The challenges with waiting lists are further compounded by shortages of workers. Although states have reported efforts to address workforce challenges, some state policies implemented during the pandemic to bolster the workforce have wound down with the termination of the public health emergency, potentially exacerbating worker shortages.

Changes in eligibility assessments also impact waiting list volumes. Between 2018 and 2020, waitlist sizes for expanded HCBS programs decreased by 19% nationally, largely due to the addition of eligibility assessments to waiting lists. Presently, all but six states screen their waiting lists for Medicaid eligibility.