A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2024

Medicaid is the primary payer for long-term services and supports (LTSS) in the United States, and pays for more than two-thirds of the LTSS delivered in home- and community-based settings (HCBS). Most HCBS are optional for states to provide and are offered through “waivers,” which allow states to offer a wide range of benefits and to choose—and limit—the number of people who 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 through the Medicaid state plan. States 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. States also use waivers to provide specialized benefits that are specific to the population covered, such as providing supported employment only to people under age 65. KFF estimates that 4.5 million Medicaid enrollees use HCBS, and that the numbers of people using HCBS through the state plan are similar to the numbers using HCBS through waivers. A state’s 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.

This data note provides new information about waiting lists from KFF’s most recent survey of state Medicaid HCBS programs, including a discussion of why waiting lists are an incomplete measure of unmet need and why they are not necessarily comparable across states or over time, despite KFF’s efforts to obtain as consistent data as possible (see Box 1). Key takeaways include:

• The number of states that maintain waiting lists or interest lists for people who would like to receive HCBS has fluctuated little between 2016 and 2024.
• In most years since 2016, there have been roughly 0.7 million people on waiting lists or interest lists, with a total of over 710,000 in 2024.
• Most people on waiting lists or interest lists have intellectual or developmental disabilities and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.
• Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan HCBS benefits.
• KFF also recently updated the waiting list indicators on State Health Facts, which show data by state and target population.

Waiting lists provide an indication of people who may need services they are not receiving, but they are an incomplete measure of unmet need because they don’t include people with unmet needs in states that do not cover the applicable services (and therefore, have no waiting list). Waiting lists reflect the populations a state chooses to serve, the services it decides to provide, the resources it commits, and the availability of workers to provide services. In addition, states’ approaches to managing waiting lists differ in how they prioritize and screen for eligibility, 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. Finally, although people may wait a long time to receive waiver services—40 months on average in 2024—most people are eligible for other types of HCBS while they wait.

Even though HCBS waiting lists are an imperfect measure of unmet need, there are no other alternative measures available. Many HCBS programs were enacted or expanded in response to the Olmstead decision, a court ruling that found the unjustified institutionalization of people with disabilities is illegal discrimination. As 2024 marked the 25^th anniversary of Olmstead, waiting lists are sometimes described as contributing to the risk of unnecessary institutionalization for people with disabilities, and Democrats and Republicans alike proposed legislation in 2024 to address them. Starting in 2027, states will be required to report the number of people on waiting lists as required under a final rule on access to Medicaid services.

How did the number of states with waiting lists change between 2016 and 2024?

Between 2016 and 2024 the number of states with waiting lists has fluctuated between 37 and 41 and is currently at 40 states (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.

There were more changes in waiting lists for specific types of waivers, however. Georgia, Kentucky, and West Virginia reported new lists for seniors/adults with physical disabilities (with a combined 2,683 people) and Alaska, Connecticut, South Dakota, and Washington reported new lists for people with intellectual or developmental disabilities (I/DD, with a combined 13,251 people on the lists). New Jersey newly reported a waiting list of nearly 2,700 people for its Community Care program, which serves people with I/DD and is part of the state’s larger 1115 waiver.

How did the number of people on waiting lists change between 2016 and 2024?

In most years between 2016 and 2024, roughly 0.7 million people have been on waiting lists or interest lists for HCBS (Figure 2). Between 2023 and 2024, total enrollment in waiting lists and interest lists increased by 2.6%. Overall, there was an increase in the number of people on waiting or interest lists in 19 states and a decrease in 14 states.

One factor that contributes to changes over time—especially the notable decline between 2018 and 2020—is that not all states screen for Medicaid eligibility prior to adding people to waiting lists and changes in this policy may result in changes in waiting list volumes. For example, between 2018 and 2020, the total number of people on waiting lists decreased by 155,000 or 19%. However, nearly half of that change came from Ohio’s implementation of a waiting list assessment of waiver eligibility, which reduced the size of the state’s waiting list by nearly 70,000 people. In 2024, most states (32) with waiting lists screen individuals for waiver eligibility among at least one waiver, but even among those states, 4 do not screen for all waivers. The 8 states that do not screen for eligibility among any waivers (Alaska, Illinois, Iowa, Oklahoma, Oregon, South Carolina, Texas, and Washington) account for over half of all people on waiting lists.

In all years since 2016, over half of people on HCBS waiting lists or interest 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. Interviews about HCBS waiting lists found that when waiver services are provided on a first-come, first-served basis, people enrolled in waiting lists are 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. Among the eight states that do not screen people for eligibility on any lists, six have only waiting lists, one (Texas) has only interest lists, and one (Washington) uses both. (Illinois does not establish eligibility until selection but does a preliminary evaluation of eligibility prior to placing someone on the list.)

Between 2023 and 2024, several states made changes to their waiting list policies that resulted in notable changes in the number of people on a specific waiting list:

• Illinois implemented a new law requiring school staff to discuss services for children with developmental disabilities in certain situations. The number of people on those two waiting lists increased from 14,444 to 15,905.
• Iowa implemented a new process for assessing people’s need for services to move people with emergent needs higher on the waiting lists for waivers serving seniors/adults with physical disabilities and people with mental health needs. The number of people on the mental health waiting list increased from 802 to 1,128 and on the seniors/adults with physical disabilities waiting list increased from 9,684 to 10,508.
• For its I/DD waiver serving children with Autism, Maryland added a screening call for applicants to ensure that children have an Individualized Family Service Plan or Individualized Education Program, and at least 15 hours each week of special education or related services prior to adding people to the waiting list. The change reduced the number of people on the waiting list from 6,431 to 5,280.

Who is on waiting lists for HCBS?

Most people on waiting lists have intellectual or developmental disabilities (I/DD), particularly in states that do not screen for waiver eligibility before placing someone on a waiting list. People on waiting lists for waivers serving people with I/DD (which include waivers specific to people who have Autism) comprise 89% of waiting lists in states that do not screen for waiver eligibility, compared with 49% 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 one-quarter (24%), while the remaining share (3%) includes children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, people with mental illness, and 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 2024, people on the waiting or interest lists accessed services after an average of 40 months (32 of 40 states responding), down from 45 months in 2021, but up from 36 months in 2023. People with I/DD waited the longest for services, 50 months on average. The average waiting period for other waiver populations ranged from 6 months for waivers targeting individuals with mental illness to 44 months for waivers that serve 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 (70 months versus 43 months, on average).

Most people on waiting or interest lists are eligible to receive other types of HCBS while they wait. Among the 710,000 people on lists for waiver services in 2024, living arrangements are unknown for more than 560,000. Among the people whose living arrangements are known, 98% (147,000) live in the community and 2% (3,300) live in institutional settings. While waiting for waiver services, people living in the community are likely to be eligible for other HCBS through Medicaid state plans. Of the over 4 million people who use HCBS, KFF estimates that roughly half use services provided through the Medicaid state plan, such as personal care to help with bathing or preparing meals, therapies to help people regain or acquire independent living skills, and assistive technology. States may not use waiting lists to restrict the number of people eligible to use such services and over 80% of people on HCBS waiting lists are eligible for personal care or other state plan services. They would not, however, have access to more specialized services such as supported employment or adult day care. People on waiting lists who receive state plan services may also have fewer hours of personal care than they would in a waiver program, or they may not have assistance with some of the activities they need help with such as bathing, dressing, preparing meals, or managing medication.

How are workforce shortages and changes in federal policy affecting HCBS waiting lists?

Although waiting lists may reflect states’ budget constraints, states also use waiting lists to manage shortages of HCBS workers, and with ongoing workforce shortages, it may be difficult to meaningfully reduce waiting lists. Rhode Island and West Virginia newly reported waiting lists because of workforce shortages. In Rhode Island, the waiting list captures people who are eligible for and enrolled in their 1115 waiver but are not receiving home care because of provider shortages. The state noted that provider shortages differ across communities, and that some people waiting for the authorized services might be living in institutions and waiting to transition to community living. West Virginia’s new waiting list for their mental health waiver reflects a lack of workers accepting new patients. Workforce shortages are not unique to Rhode Island and West Virginia, they were reported by all responding states in KFF’s 2023 survey of HCBS programs. It is unlikely that there will be major changes in states’ waiting lists for HCBS without corresponding changes in the availability of HCBS workers.

As states exhaust expanded federal funding for HCBS from the American Rescue Plan Act (ARPA), addressing waiting lists may become more difficult. Section 9817 of the ARPA provided states with an additional 10 percentage points of federal funding for their Medicaid HCBS expenditures between April 1, 2021, and March 31, 2022. States were required to reinvest this additional federal funding into Medicaid HCBS, resulting in an estimated $37 billion in new HCBS funding. As of December 31, 2023, the number one use of the ARPA funds—accounting for more than $26 billion of the planned $37 billion in new funding—was for workforce recruitment and retention. The second largest allocation (an additional $4 billion) was for workforce training. The end of extra workforce-oriented funding could exacerbate workforce challenges, potentially increasing waiting lists, and states planned to spend almost $2 billion directly on reducing or eliminating waiting lists.

The additional ARPA funding will end in most states by March 2025, although 4 states (Missouri, South Dakota, Virginia, and Washington) had already exhausted their funds by August 2024 and 13 states (Alaska, Georgia, Kansas, Maine, Michigan, Montana, North Dakota, New Jersey, New Mexico, Ohio, Pennsylvania, Vermont, and Wisconsin) have received extensions. Three states (California, New Mexico, and Texas), which together accounted for over half of the people on waiting lists in 2024, reported using ARPA funding to reduce or eliminate waiting lists and that continuing those reductions are a top priority. However, it is uncertain how many ARPA initiatives will be sustainable in the long run as the additional federal funds are exhausted.

A new rule on access to Medicaid services will require states to report more information about people waiting for HCBS waiver services starting in July 2027. The new rule requires states to report the number of people who are waiting to enroll in a waiver program, information on whether the people on the list have been screened for eligibility, and the average amount of time people newly enrolled in the waiver over the past 12 months had spent waiting to enroll. Although the regulation does not mention interest lists, referral lists, or registries, the preamble to the rule indicates CMS’ intent for states to report all types of lists.

Recognizing that waiting lists are an imperfect measure of unmet need, the rule also requires states to report two new measures related to access to care for people newly receiving waiver services. For people who began receiving waiver services in the past 12 months, states must also report: (1) the average length of time between approval for homemaker, home health aide, personal care, and habilitation services and the start of services and (2) the percent of authorized hours that were provided. (States may report the latter two measures for a “statistically valid” random sample of recipients.)

Despite the enhanced data states will be required to report, waiting list and waiver information will remain imperfect measures of unmet need. None of the new data will reflect how long it takes for people to receive HCBS provided through the Medicaid state plan, or how comprehensive those services are. The new data also do not capture the number of people whose authorized services are below needed levels because of hourly or dollar caps on the amount of HCBS they can receive. With most people on waiting lists still eligible for state plan services, understanding what services they receive while waiting is also a dimension in understanding how acute the needs are among people on waiting lists. More broadly, the waiting list numbers, and associated requirements, apply to waiver services only, which are optional for states to provide. New data will offer insight into unmet needs among people receiving and waiting for optional services, but there will still be little information about people who need HCBS but are not receiving care.