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What if your state offered services that would let you stay in your home instead of moving to a nursing facility, but you had to wait for months or even years to receive them? That’s the case for more than 700,000 people on waiting lists for Medicaid-provided home and community-based services (HCBS), according to a new survey by the KFF.
HCBS allows people with disabilities and older adults to receive supportive services at home and stay in their communities as opposed to living in institutions. Services can include housekeeping, shopping, transportation, employment support and other more specialized services.
While Medicaid must provide certain supportive medical services for enrollees and nursing facility care, some additional services, including some HCBS, are paid for by Medicaid through “waivers.” Each state decides what type of waivers it will provide. For example, waivers can cover care for people with intellectual and developmental disabilities, or for people with autism, or for those who require round-the-clock care. But states often cap the number of people who can receive services under waivers, resulting in waiting lists that can range from small or non-existent, to lists with thousands of people who could wait years for services.
KFF estimates that 4.5 million Medicaid enrollees use HCBS. Their recent survey found that since 2016, waiting lists for HCBS waivers have changed little, with approximately 700,000 people on waiting lists in 2016 and 710,000 in 2023.
According to the survey, Texas has the most people on waiting lists, with 342,575 people. Alaska, Missouri, North Dakota, South Dakota, have fewer than 100 people on their waiting lists. In Illinois, 15,095 people are on waiting lists. There can be numerous reasons for variation in waiting lists across states says Alice Burns, associate director of the KFF’s Program on Medicaid and the Uninsured and co-author on the survey.
Waiting lists highlight that people are interested in specialist services and not receiving them, but they are no longer in states with more extensive coverage and where people are more well-aware of what services are available,” says Burns. “Also, a state can offer a new waiver and now they’re serving people they weren’t serving before so there’s pent up demand and a waiting list for that waiver.”
One factor that makes it hard to compare lists is that some states don’t screen to see if people meet the qualifications for waivers before they are placed on the waiting list. Some states don’t evaluate people for eligibility before their names are added to waiting lists, so these lists can be very long. People may also be added to multiple wait lists for different waivers or put themselves on lists in anticipation of needing services in the future. This is especially relevant for people with intellectual and developmental disabilities, who make up the majority of individuals on waiting lists across states. Additionally, not all states elect to keep a waiting list. Therefore, the size of a waiting list or having no list at all does not directly reflect service and system quality.
Parents of children with disabilities are often very effective advocates and are aware of waivers and so get their children on the lists early often in attempt to avoid a long wait when their child fully needs the supports, which can make lists for IDD services longer, explains Burns.
The factors contributing to shorter waiting lists can be hard to pinpoint. Providing adequate services through the Medicaid state plan or having enough waivers to meet the needs of the population can contribute to states having shorter or no waiting lists.
Burns also says that some state waiting lists may be reflective of their strategies to manage workforce shortages.
“I've spoken with at least one state that doesn’t have enough providers to serve everybody. When their home health agencies have room to take on more clients, they open up slots on the waiting list. This is in contrast to other states where people may get off the waiting list, but then find out they have to wait for services because there's no provider available to see them,” says Burns.
In 2027, the Medicaid Access Rule mandates that states must start reporting information on HCBS waiting lists, but Burns isn’t sure if it will help reduce waiting lists. “It's not clear to me how much will change unless the requirement to report data to the government spurs states to report better data than they are reporting on our survey,” she says. But it could help states reflect on changes to their waiting lists year-over-year.
Reducing waiting lists by providing adequate and enough services in each state is absolutely crucial, says Ben Oxley, 37, who has cerebral palsy and uses a wheelchair. Oxley is featured in the 2019 film, 6,000 Waiting, produced by the Georgia Council on Developmental Disabilities. The film follows several people as they sit on the HCBS waiver waiting list in Georgia, which is now at 7,000 people.
“After graduating high school and before I got the waiver, I was basically sitting at home with nothing to do,” says Oxley, who lives in McDonough, Georgia. “I became segregated because I didn’t have the assistance I needed to go out into the community because my mom was working, and she didn’t have time to take me out.”
Oxley’s mother heard about Medicaid from a person at her office. She applied and was able to get Oxley a Katie Beckett Waiver. The waiver, which went into effect in 1982 and is available in 24 states, is part of a Medicaid program that provides HCBS to children under 19 years old with disabilities. Oxley was one of the first people in Georgia to get the waiver.
“After I got the waiver and had help, I wasn’t at home waiting for my mom to take me to Walmart just to have something to do and to get out of the house.”
Oxley received the New Opportunities waiver in 2007, which gives families funds to hire a part-time caregiver who can provide logistical, life-skills and caregiving support to people with disabilities. Ben got his waiver after a nine month wait, but he’s one of the lucky ones. The average wait for most waivers in Georgia is seven to ten years.
Today, Oxley is an advocate with the Unlock! Campaign of the Georgia Council on Developmental Disabilities, which aims to get more funding for people with disabilities. He’s also a trainer at the Center for Leadership in Disability at Georgia State University and volunteers at an HIV prevention group focused on reaching people in the Intellectual/Developmental Disability community.