Medicaid HCBS Waiting Lists in 2026: Eligibility, Delays, and How Families Can Plan

(What budget pressure and policy changes could mean for care at home)

Families across the country are hearing the same sentence from state programs and home care providers: “We have a list.” That list—often called a waiting list, interest list, registry, or referral list—is one of the clearest signs that demand for home-based support is greater than current system capacity.

KFF’s most recent state survey shows 41 states maintain waiting lists or interest lists for Medicaid home care (HCBS), and over 600,000 people were on these lists in 2025.  At the same time, states are facing new fiscal and policy pressure related to federal Medicaid changes enacted in 2025, with major cost shifts expected to push states toward difficult choices about eligibility, benefits, and provider payment.

This article explains what Medicaid (HCBS) is and the practical steps you can take now to plan.

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What Medicaid HCBS is, and why it matters for “care at home”

Home and Community-Based Services (HCBS) provide supports that help older adults and people with disabilities live at home or in community settings instead of institutions. These services are often the difference between “barely getting by” and “living safely with dignity.” Examples of HCBS commonly include personal care assistance (bathing, dressing, eating), homemaker help, respite, adult day services, supported employment, home modifications, and more—depending on the state and the program.

A key point families often learn late: Medicare generally does not cover long-term personal care, while Medicaid is the primary payer for long-term services and supports for people who meet eligibility requirements. Many adults mistakenly think Medicare is the main payer for nursing/home care, when Medicaid is the major payer in this space.

Many people assume that if something is “Medicaid-covered,” everyone who qualifies automatically receives it. With HCBS, it’s more complicated. Some HCBS programs can cap enrollment. States can offer home care through state plan benefits or through waivers.

• State plan services generally must be available to all eligible people under the state plan rules.

• Waivers (especially 1915(c) and some 1115 authorities) can target certain populations and—critically—can limit the number of people served.

  
  

When slots are full, states often maintain waiting lists (sometimes called interest lists, registries, or similar).

KFF’s 2025 survey findings provide one of the clearest national snapshots:

• 41 states had waiting lists or interest lists for Medicaid home care.

• There have been at least 0.5 million people on lists in every year since 2016, with over 600,000 in 2025.

• Total list enrollment rose 14% from 2024 to 2025.

• Most people on lists are individuals with intellectual or developmental disabilities (I/DD)—about three-quarters of the total waiting list population.

  
  

“Interest list” does not always mean “eligible and waiting for a slot." Many people live in states that do not screen anyone for eligibility prior to adding them to lists, which can inflate list size relative to the number of people who will ultimately qualify. In 2025, six states that don’t screen for eligibility accounted for more than half of people on lists.

This is why families sometimes hear, “Get on the list early,” even before needs become urgent—especially for I/DD waivers.

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How eligibility works (as explained by KFF)

Eligibility for Medicaid HCBS usually has two main parts:

A) Financial eligibility—Many people eligible for HCBS qualify through “non-modified adjusted gross income (MAGI)” pathways. These pathways typically include income and asset rules, and states vary substantially.

A common benchmark income can be capped at 300% of the SSI limit, and assets are often limited (commonly around $2,000 for an individual, though details vary by state and circumstances).

B) Functional eligibility (care needs): Many HCBS programs require that a person meet a level of need related to helping with activities of daily living (ADLs), like eating, bathing, dressing, mobility, and toileting. For 1915(c) waivers, CRS notes that states use these waivers to serve people who, without HCBS, would require Medicaid-covered institutional care—one reason “level of care” standards are so central.

Why families become confused. You may qualify for Medicaid health coverage but not for a particular HCBS program. Or you may qualify for HCBS in one state but not another because states set many details differently.

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What “cuts” and budget pressure could mean at home

The phrase “cuts” can sound abstract, but it often translates into very concrete changes families feel. KFF estimates that the 2025 reconciliation law reduces federal Medicaid spending by $911 billion over a decade and notes that reductions of this magnitude can force states into difficult trade-offs.

States operate Medicaid under balanced budget requirements, so when federal financing tightens or costs rise, states typically consider some combination of the following:

• restricting eligibility,

• reducing optional benefits, and/or

• cutting provider payment rates.

  
  

Nursing facility care is a required Medicaid benefit, but many HCBS services are optional and delivered through optional authorities. KFF notes that unlike institutional long-term care, nearly all home care beyond required home health is optional for states.

That means when states look for budget relief, optional services can become targets—including HCBS.

The potential impact on Families

Budget pressure can manifest in the following ways at home:

1) Longer waiting lists and fewer slots. If waiver slots don’t expand—or if states restrict enrollment—lists can grow. KFF explicitly notes waiting lists could increase or decrease in response to federal Medicaid cuts because state policy choices vary.

2) Lower provider rates and reduced workforce capacity. If states cut or freeze payment rates, agencies may struggle to recruit and keep workers, reducing available hours even for people already approved. KFF notes states often respond to fiscal pressure with restrictions on home care and highlights the risk that state governments may cut payment rates or limit benefits under new pressures.

3) Tighter service packages (fewer hours or narrower services). Some states may keep eligibility but limit hours, reduce certain service categories, or apply stricter utilization controls. KFF describes the wide variability in what programs cover and how states manage home care.

4) Increased administrative burden and redeterminations are affecting coverage stability. Several analyses describe new requirements and implementation burdens tied to federal changes, which can increase administrative churn and affect continuity of coverage for some groups—indirectly pressuring state budgets and capacity.

5) State-by-state “early signals.” Recent reporting describes states beginning to adjust budgets under anticipated Medicaid austerity, including disability services cuts in some places.

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How families may plan (even when the system seems uncertain)

Step 1: Apply early and get on the right list

If your loved one is likely to need HCBS, apply before the need becomes urgent. In many states, delays are long, and some families join lists early—especially for I/DD waivers.

Step 2: Ask what you can receive while waiting

KFF reports that most people on lists are eligible for some Medicaid services under the state plan (like personal care) even while they wait for more specialized waiver services. Ask the caseworker or state office: "What services can start now under the state plan while we wait for the waiver slot?”

Step 3: Understand the two tracks: “Medicaid eligibility” vs “waiver slot."

Clarify whether you are financially eligible for Medicaid today and whether you are functionally eligible for the program, and then confirm whether you are waiting for a waiver slot, a service authorization, or simply a provider availability issue. KFF and MACPAC both note that waiting lists don’t capture all unmet need because some people are technically enrolled, but there still isn’t enough provider capacity to deliver the authorized hours.

Step 4: Document needs clearly (functional eligibility often hinges on details)

Because functional eligibility is tied to ADLs and safety needs, keep a simple weekly log: falls/near-falls, wandering, toileting assistance, medication oversight, transfers, behavior risks, and caregiver overnight disruption. This helps during assessments and reassessments.

Step 5: Build a “bridge plan” for the waiting period

Even if Medicaid HCBS is the goal, many families need a realistic bridge:

• part-time private pay (if possible)

• adult day programs

• rotating family coverage

• faith/community support

• respite planning to protect the primary caregiver

  
  

Step 6: Plan for policy uncertainty without panic

If your state tightens eligibility, changes rates, or alters benefits, families are helped most by being ready to

• respond to mail quickly (renewals, documentation requests)

• ask for written notices

• appeal when appropriate

• connect with disability/aging advocates who track state-level changes

  
  

If you are a policymaker or provider reading this

Waiting lists are not just numbers; they reflect real risk shifting to families. Public reporting in 2027 may bring more consistent visibility to the gap between need and capacity. Stabilizing HCBS access needs attention to both financing and the direct care workforce, as authorized services are not relevant without workers.

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Medicaid HCBS makes aging at home and community living possible for millions. However, growing demand, uneven state capacity, long waiting lists, and new fiscal constraints put pressure on it.

Families can’t control every policy change, but they can plan: apply early, ask what services begin while waiting, document needs, create a bridge plan, and build support around the caregiver. And for agencies and policymakers, the path forward is not just “more rules”—it is matching funding, workforce, and accountability to the real needs of people trying to live at home with dignity.