A Look at Waiting lists for Home and Community-Based Services from 2016 to 2021

Home and community-based services (HCBS) waivers allow states to offer a wide range of benefits and to choose—and limit—how many people receive services. The only HCBS that states are required to cover is home health, but states may choose to cover personal care and other services such as private duty nursing. Those benefits are generally available to all Medicaid enrollees who need them. States may use HCBS waivers to offer expanded personal care benefits or to provide additional services such as adult day care, supported employment, and non-medical transportation. Because waivers may only be offered to specific populations, states often provide specialized benefits through waivers that are specific to the population covered. For example, states might use an HCBS waiver to provide supported employment only to people under age 65.

States’ ability to cap the number of people enrolled in HCBS waivers can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available. Waiting lists reflect the populations a state chooses to serve, the services it decides to provide, and the resources it commits. In addition, states’ waiting list management approaches differ with regard to prioritization and eligibility screening processes, making comparisons across states difficult. States are only able to use waiting lists for optional services so the number of people on waiting lists can increase when states offer a new waiver or make new services available within existing waivers; in these cases, the number of people receiving services increases, but so does the number of people on a waiting list. In many cases, people may need additional services, but the state doesn’t offer them to anyone or only offers them to people with certain types of disabilities. The unmet needs of those people would not be reflected in the waiting list numbers. Finally, although people may wait a long time to receive waiver services—45 months on average—many of the people waiting for services receive other types of HCBS while they wait.

Even though HCBS waiting lists are an imperfect measure of unmet need, there are no other measures available.  Therefore, waiting lists remain a source of concern to policymakers and proposals to eliminate them have been put forth by both Republicans and Democrats. This data note provides new information about waiting lists from KFF’s most recent survey of state Medicaid HCBS programs, highlighting why waiting lists are an incomplete measure of unmet need and why they are not comparable across states or over time. KFF also recently provided new waiting list indicators on State Health Facts to help people better understand who is on waiting lists and what those waiting lists mean.

How did the number of states with waiting lists change between 2016 and 2021?

Between 2016 and 2021 the number of states with waiting lists has fluctuated and is currently at a low of 37 states in 2021 (out of the 50 states and DC, Figure 1). While some Affordable Care Act (ACA) opponents have cited waiver waiting lists to argue that expanding Medicaid diverts funds from seniors and people with disabilities, research shows that ACA Medicaid expansion has led to gains in coverage for people with disabilities and chronic illnesses. Waiting lists for HCBS predate the ACA Medicaid expansion, which became effective in most states in 2014, and both expansion and non-expansion states have waiting lists. Waiver enrollment caps have existed since HCBS waiver authority was added to federal Medicaid law in the early 1980s.

How did the number of people on waiting lists change between 2016 and 2021?

The number of people on waiting lists fluctuated between 2016 and 2021, from 656,000 in 2016 to 820,000 in 2018, and back to 656,000 in 2021. A contributing factor to those fluctuations—and a reason that waiting list numbers are not comparable across states—is that not all states screen for Medicaid eligibility prior to adding people to waiting lists. In 2021, most states (28) with waiting lists screened individuals for waiver eligibility among at least one waiver, but even among those states, 7 did not screen for all waivers. There were 9 states that do not screen for eligibility among any waivers and those 9 states account for over half of all people on waiting lists. Changes in total waiting lists over time may reflect changes in states’ policies towards eligibility screening (Figure 2).

In all years since 2016, over half of people on HCBS waiting lists lived in states that did not screen people on waiting lists for eligibility. One reason waiting lists provide an incomplete picture of need is that not all people on waiting lists will be eligible for services. Stakeholder interviews about HCBS waiting lists found that when waiver services are provided on a first-come, first-served basis, people enrolled in waiting lists in anticipation of future need. That study found that in some states, families would add their children to waiting lists for people with intellectual or developmental disabilities (I/DD) at a young age, assuming that by the time they reached the top of the waiting list, their children would have developed the immediate need for services. Many of those waivers offer comprehensive HCBS packages that include supported employment, supportive housing, or round-the-clock services.

When states change their eligibility screening policies, that may cause large fluctuations in waiting lists. Between 2018 and 2020, the total number of people on waiting lists decreased by 155,000 or 19%. However, that change was driven by a decrease in the number of people on waiting lists in states that did not screen for eligibility (110,000 people or 22%). The number of people on waiting lists in states that did screen for eligibility decreased by 45,000 or 14%. Nearly all the change in the national waiting list numbers between 2018 and 2020 can be explained by policy changes in two states:

  • Louisiana had nearly 30,000 people on their waiting lists for I/DD services in 2018. That year, the state implemented a new system, Screening for Urgency of Need (SUN) to determine if individuals required services soon to avoid institutionalization. Those that met the criterion of urgent or emergent need were provided with services. Those that did not remain on a registry and are screened at regular intervals or upon request, but the state does not consider the registry to be a waiting list. By 2020, the waiting list was eliminated.
  • Ohio had nearly 69,000 people on their waiting list for I/DD services in 2018. In 2019, they developed a new waiting list assessment. Using that assessment, the state was able to remove people from the waiting list who did not meet the waiver criteria and provide them with other Medicaid or state resources to meet their needs when appropriate. In 2020 and 2021, the waiting list was only about 2,000 people.

Between 2020 and 2021, waiting list enrollment declined by one percent. Overall, 19 states reported a decline in waiting list enrollment, while the remainder reported an increase (17) or no change (1).

Several states no longer operate waiting lists for certain waivers, including:

  • Minnesota and New Hampshire for people with I/DD;
  • Missouri for people with physical disabilities;
  • West Virginia and Wisconsin for seniors and people with disabilities;
  • Connecticut and Louisiana for people with mental health needs; and
  • Indiana and Kentucky for people with traumatic brain or spinal cord injuries.

A smaller number of states established new waiting lists, including:

  • Connecticut and Oregon established a waiting list for people with I/DD;
  • North Carolina established a waiting list for people with traumatic brain or spinal cord injuries.

Who is on waiting lists for HCBS?

Most people on waiting lists have I/DD, particularly in states that do not screen for waiver eligibility before placing someone on a waiting list. People with I/DD comprise 84% of waiting lists in states that do not screen for waiver eligibility, compared with 60% in states that do determine waiver eligibility before placing someone on a waiting list (Figure 3). People with I/DD comprise almost three-quarters (73%) of the total waiver waiting list population. Seniors and adults with physical disabilities account for about one-quarter (24%), while the remaining share (2%) includes children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, and people with mental illness. In 2021, there were no waiting lists for people with HIV/AIDS.

People who are on HCBS waiting lists are generally not representative of the Medicaid population or the population that uses HCBS. Most people on waiting lists have I/DD, but KFF analysis shows that people with I/DD comprise fewer than half of the people served through 1915(c) waivers (the largest source of Medicaid HCBS spending).

How long do people on HCBS waiting lists wait to access services and do they have access to HCBS while waiting?

In 2021, people on the waiting lists waited an average of 45 months to receive HCBS waiver services (29 of 37 states responding), up from 44 months in 2020. People with I/DD waited the longest for services, 67 months on average. The average waiting period for other waiver populations ranged from 2 months for waivers targeting seniors to 30 months for waivers that serve medically fragile children. People with I/DD residing in states that do not screen for eligibility wait longer for services than people with I/DD residing in states that do screen for waiver eligibility (81 months versus 57 months, on average). Almost all (98%) individuals currently on a waiting list are living in the community (26 of 37 states responding).

All 37 states with waiting lists prioritize certain individuals to receive waiver services when a slot becomes available. Twenty-eight states offer waivers that prioritize length of time on the waiting lists, and twenty-three states give priority to individuals in crisis/emergency status. Additionally, twenty-one states give priority to people who are moving from an institution to the community. Some states also prioritize based on risk of institutionalization (17), by degree of functional need (11), and age (3). Thirteen states report other prioritization criteria including COVID-related situations, homelessness, and instances of abuse/neglect. Most states (31 of 36 responding) use more than one priority group. Nationally, states report that over 79,000 individuals on a waiting list were offered waivers services in the past year (28 of 37 states responding).

Many people on HCBS waiting lists are receiving other HCBS while they wait. Most Medicaid benefits are provided through the state plan. States offer a variety of HCBS—such as personal care to help with bathing or preparing meals, therapies to help people regain or acquire independent living skills, and assistive technology—through their state plans. States are not allowed to use waiting lists to restrict the number of people eligible to use such services. If people on waiting lists are eligible for Medicaid HCBS, they are likely to be receiving state plan HCBS while they wait, which include home health and, in many states, personal care. They would not, however, have access to more specialized services such as supported employment or adult day care and the state plan HCBS may be more limited than what would be available through a waiver. Specifically, not all states offer personal care and among those that do, many states choose to limit services to specific sites or provider types; or to apply utilization controls on the number of hours received or costs incurred.

Of 36 states that responded to the question in 2021, all but 5 (FL, IL, IN, ND, PA) reported that individuals on a waiting list were receiving state plan HCBS. States also have other authorities to provide HCBS to people on waiting lists, including offering waiver services to children through the Early Periodic Screening, Diagnosis, and Treatment authority or using multiple, tiered waivers that provide different types and intensities of services. Medicaid enrollees can receive waiver services from one waiver while they are on a waiting list for another.

Looking ahead, shortages of direct care workers may continue to create problems for states seeking to reduce the number of people on waiting lists. States reported workforce shortages of direct care workers as the primary impact of the COVID-19 pandemic across all HCBS settings in KFF’s most recent survey of state HCBS programs. Waiting lists may reflect both shortages of workers and insufficient state funds. As the pandemic persisted, an increasing number of states reported provider closures with nearly all (44) states reporting that a provider had closed as of 2022. Although states responded to that challenge by increasing provider payment rates and increasing opportunities for people to self-direct their services, workforce challenges persist. It remains to be seen how policy changes enacted during the pandemic will affect the provision of HCBS in future years and whether the investments in HCBS through the American Rescue Plan Act will result in capacity increases even after the federal funding ends.

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