Medicaid Home Care Waivers: Why There's a Waitlist and What to Do
Medicaid can pay for care at home instead of in a nursing home. That includes personal care aides, adult day programs, respite for family caregivers, and more. Much of this help comes through home and community-based services (HCBS) waivers, and many waivers cap how many people they serve. That's why families often hear "you're on the waiting list." Here's how the programs work, why waitlists exist, and what you can do while you wait.
AT A GLANCE
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What home and community-based services are
Medicaid.gov describes HCBS as services that let Medicaid beneficiaries "receive services in their own homes or communities rather than institutions or other isolated settings." The groups served include older adults, people with intellectual or developmental disabilities, people with physical disabilities, and people with mental health or substance use disorders.
HCBS is now the main way Medicaid delivers long-term care. CMS reports that in 2021, 86.2% of people using Medicaid long-term services and supports received HCBS, and 63.2% of long-term care spending went to HCBS.
HCBS started in 1983, when Congress added section 1915(c) to the Social Security Act. States could then get a waiver of the Medicaid rules that otherwise tied long-term care to institutions. In 2005, HCBS also became an option states could include in their regular Medicaid state plans.
The four ways states offer HCBS
Authority | What it is | Can the state cap enrollment? |
|---|---|---|
1915(c) waiver | A waiver program for people who would otherwise need hospital, nursing facility or ICF/IID care. Can target specific groups and areas | Yes. The state sets a maximum number of participants |
1915(i) state plan HCBS | HCBS in the state's Medicaid plan for people who meet state-defined needs criteria | No. CMS says it must be available to all eligible people in the state |
1915(j) self-directed personal assistance | Lets people direct their own personal care services under the state plan or a waiver | States may limit how many people self-direct |
1915(k) Community First Choice | Home and community-based attendant services and supports under the state plan | CMS's page doesn't address caps. It's a state plan option, and states get a 6-percentage-point increase in federal matching payments |
Not every state uses every option. Your state Medicaid agency decides which programs exist and who can join them.
How 1915(c) waivers work
Under a 1915(c) waiver, a state can skip three Medicaid rules that normally apply:
Statewideness: the waiver can operate only in certain areas, such as where need is highest or where providers are available.
Comparability: services can go only to certain groups at risk of institutional care, such as older adults, technology-dependent children, or people with intellectual disabilities, behavioral conditions, or a specific diagnosis.
Community income and resource rules: people who would qualify for Medicaid only in an institution, often because of a spouse's or parent's income and resources, can qualify at home. States can also apply spousal impoverishment rules.
In return, each waiver has to show it won't cost more than institutional care. It also has to protect participants' health and welfare, set reasonable provider standards, and follow an individualized, person-centered plan of care.
Who qualifies
There are two tests. First, you need to be in the waiver's target group, which can be defined by age or by a diagnosis like autism, epilepsy, cerebral palsy, traumatic brain injury or HIV/AIDS. Second, you need to meet the level of care test. You must need the level of care provided in a hospital, nursing facility, or intermediate care facility for individuals with intellectual disabilities (ICF/IID). Without waiver services, you'd be expected to need institutional care.
Federal rules (42 CFR 441.302) say the state evaluates this when there's a reasonable sign you might need institutional care within about a month without home services. It reevaluates at least once a year.
You also need to qualify for Medicaid financially, under the rules your state uses for that waiver.
What waivers can cover
CMS lists standard waiver services, including:
Service | What it means in practice |
|---|---|
Case management | Support and service coordination |
Homemaker | Help with household tasks |
Home health aide and personal care | Hands-on help at home |
Adult day health | Daytime services in a community setting |
Habilitation (day and residential) | Help learning and keeping skills for daily living |
Respite care | Short breaks for unpaid family caregivers |
States can also propose "other" services that help people move out of institutions or avoid them. That's why waiver packages vary so much from state to state.
Why there are waiting lists
The key sentence is on CMS's 1915(c) page: "States choose the maximum number of people that will be served under a HCBS Waiver program."
Federal rules make that cap official. Each state must tell CMS how many people it plans to serve each year of a waiver. That number "will constitute a limit on the size of the waiver program" unless CMS approves an increase (42 CFR 441.303(f)(6)). When the slots are full, states that keep a list put new applicants on it.
Waiting lists are about funded slots. Being on one doesn't mean you were found ineligible.
What changes in 2027
A 2024 federal rule added waitlist reporting. Each state that caps a waiver and keeps a waiting list must report to CMS every year on:
how it maintains the list, including whether it screens people for eligibility and how often it rescreens them;
how many people are on the list; and
how long people newly enrolled in the past 12 months waited, on average.
States must also report how long it takes to start homemaker, home health aide, personal care and habilitation services after they're approved. These reporting rules apply starting 3 years after July 9, 2024, which is July 2027. Managed care states follow a slightly different timeline (42 CFR 441.311).
What to do if you're facing a waitlist
GETTING HELP AT HOME WHILE YOU WAIT
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Your right to choose and to appeal
If you're found likely to need institutional care, federal rules say you or your representative must be told about feasible alternatives under the waiver and be given a choice between institutional services and home and community-based services (42 CFR 441.302(d)).
Under 42 CFR 431.220, the state must offer a hearing if it denies a claim for eligibility or services, changes the amount or type of services, or doesn't act on a claim with reasonable promptness. Ask the agency how, and by when, to request one.
States choose the maximum number of people that will be served under a HCBS Waiver program. (Centers for Medicare & Medicaid Services)
Self-direction: choosing your own caregivers
Many HCBS programs let you direct your own care. Under 1915(j), CMS says participants set their own provider qualifications, train their providers, and decide how much to pay for a service. At the state's option, they can hire legally liable relatives like parents or spouses, manage a cash disbursement, and buy items that increase independence or replace human help. Plans have to include an individualized backup plan in case a caregiver doesn't show up.
If paying a family member matters to you, ask your state which of its programs allow it. Rules differ by program.
Related guides
Official sources
Last checked: October 30, 2026, against Medicaid.gov's HCBS, HCBS authorities, 1915(c), 1915(i), 1915(j) and 1915(k) pages, and eCFR text of 42 CFR 441.302, 441.303, 441.311 and 431.220.
This is general information, not legal advice. Waiver names, eligibility rules, services and waitlist practices are set by each state. Contact your state Medicaid agency for the programs available where you live.
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