Patient sitting in a waiting room
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State Medicaid home- and community-based services program waiting lists could force difficult decisions for some assisted living operators with residents who have spent down their resources but now must wait for HCBS access. 

A new KFF analysis of survey data from state Medicaid HCBS programs found that almost one-fourth of individuals on waiting lists are older adults and people with physical disabilities. HCBS programs operating under the 1915(c) waiver are most commonly associated with assisted living providers.

KFF estimated that more than 4 million Medicaid enrollees use HCBS, and a state’s ability to cap the number of people enrolled via HCBS waivers can result in waiting lists — more than 692,000 individuals across 39 states were on HCBS waiting lists in 2023. 

According to the National Center for Assisted Living, 18% of assisted living residents rely on Medicaid to pay for daily services, and 61% of assisted living communities as Medicaid-certified. A small minority of state Medicaid programs do not cover services in assisted living, according to NCAL.

Alice Burns, associate director of KFF’s Program on Medicaid and the Uninsured, told McKnight’s Senior Living that assisted living residents on those waiting lists could be waiting for more care, whether that is personal care needs, music or art therapy, or adult day services. And that could put some providers in a situation of providing those services at a loss while residents wait for access to Medicaid HCBS — or not providing those services at all.

“Waiting lists may result from insufficient funding, but they may also result from insufficient staff,” Burns said.

Although states reported increasing provider payment rates and other efforts to bolster the workforce, the KFF researchers found that challenges remain and that some state policies addressing those challenges ended with the conclusion of the COVID-19 public health emergency

The KFF analysis provides state data, allowing operators to determine whether a state in which they operator has a waiting list, and what services residents might be eligible for while they wait for Medicaid HCBS placement, Burns said. 

Between 2021 and 2023, the total enrollment on HCBS waiting lists and interest lists — individuals who are interested but may not enroll in services — increased by 6%, according to KFF. And although people living with intellectual or developmental disabilities made up almost three-fourths (72%) of the total waiver waiting list population, older adults and adults living with physical disabilities accounted for 25% of those on waiting lists.

In 2023 overall, people on Medicaid HCBS waiting or interest lists waited an average of 36 months to receive services, an amount of time that is down from 45 months in 2021. But older adults only waited an average of five months for services, according to the KFF data.

The researchers said that it remains to be seen how policy changes enacted during the pandemic will affect the provision of HCBS in the future and whether HCBS investments will result in capacity increases even after federal funding ends. They also noted that state funding challenges in this area may be particularly relevant given the potential minimum staffing requirements for nursing homes, which could lead to increased state spending on institutional long-term services and supports.