While you're waiting for a Medicaid waiver, you can find out how the list is ordered, ask about slots held outside it, and look for home care that doesn't use the waiver at all. Being told your parent needs to wait, maybe for years, is a hard thing to hear when they need help now. The steps below are the ones that can actually change what happens next.

In This Guide

Why You're Waiting for a Medicaid Waiver at All

A Medicaid home and community-based services (HCBS) waiver has two gates. To qualify for a Medicaid HCBS waiver, your parent must need the level of care a hospital, nursing facility, or intermediate care facility for people with intellectual disabilities provides. And the state sets how many people each 1915(c) waiver will serve per year, a number that caps the program unless federal officials approve more. Where a state has that cap and keeps a list, qualified applicants can be placed on a waiting list.

Those lists are long. In 2025, 41 states kept HCBS waiver waiting lists or interest lists, with more than 600,000 people on them, according to KFF's survey of the state officials who run Medicaid home care. Among the 33 of those 41 states that reported a wait time to KFF, people on Medicaid HCBS waiver waiting lists reached services after an average of 32 months in 2025, down from 40 months in 2024.

That average mixes very different lines. In KFF's 2025 survey, people with intellectual or developmental disabilities made up 74% of the national Medicaid HCBS waiver waiting-list population, and older adults and adults with physical disabilities made up 23%. KFF also cautions that waiting lists are an incomplete measure of unmet need and aren't necessarily comparable across states. So if someone quoted you a wait, ask which waiver it came from. Your state's waivers are listed in our guide to HCBS waivers by state, and the basics are in our HCBS waiver explainer.

Step 1: Confirm Which Waiting List Your Parent Is On

This step sounds basic, and it's the one most worth double-checking. Call the agency that runs the waiver and ask: which waiver is my parent listed for, by name? What date does your record show? Is that a place on the list, or an application still waiting to be screened? What's the case number? Is my parent listed for any other waiver too? Write down the answers, the date, and who you spoke with. If you don't know which agency runs your parent's waiver, start with our guide to HCBS waivers by state.

Then ask how the agency will contact you when a slot opens, and make sure it has your current phone number and address.

You may want a position number, and the agency may not have one to give you. The federal waiting-list reporting rule isn't in force yet. Starting July 9, 2027 (or, where a state delivers this care through managed care, the first managed care rating period beginning on or after that date), under 42 CFR 441.311(d)(1), a state that caps a waiver and keeps a list must report how many people are on the list and the average time new enrollees spent waiting. That's reporting about the whole list, not a notice to each family.

Step 2: Ask How Your Medicaid Waiver Orders Its Waiting List

You may assume the list is first come, first served. Sometimes that's right, and sometimes it isn't. A state that caps a waiver must fill in Appendix B-3(f) of the Centers for Medicare & Medicaid Services (CMS) waiver application, "Selection of Entrants to the Waiver," and spell out its own policy. CMS's examples run from entry "offered to individuals based on the date of their application for the waiver" to entry "prioritized based on the imminent need for services that is determined through an assessment process."

Both approaches are in use. The Medicaid and CHIP Payment and Access Commission (MACPAC) reviewed 254 approved 1915(c) waivers as of March 2020 and found 199 that documented how their waiting lists are managed:

Method What decides your place Waivers
First come, first served How long you've been waiting 62
Priority Factors such as health status or a critical need from losing a caregiver 46
Priority plus wait time A priority category first, then wait time within it 21

That's a snapshot of what waiver documents said in 2020, not a count of the lists running today. What it gives you is the question. If your parent's waiver orders by date alone, a change in health won't change their place in that order. If need is part of the rule, tell the agency the same week something real changes, like a hospital stay, a fall, or the primary caregiver getting sick or moving away. Ask whether the change triggers a new assessment or a different priority category, and send it in writing too.

Step 3: Ask About Slots Held Outside the Line

A waiver can keep some of its slots off the waiting list. CMS's application says "The State may reserve a portion of the participant capacity of the waiver for specified purposes (e.g., provide for the community transition of institutionalized persons or furnish waiver services to individuals experiencing a crisis) subject to CMS review and approval."

Where that reserved capacity exists, it can matter a great deal. MACPAC explains that "although a waiver may be otherwise full, an individual whose circumstances fall under a reserved capacity purpose can enroll in the waiver immediately." But reserving capacity is each state's choice, and the same CMS form offers the box "Not applicable. The state does not reserve capacity."

So ask now, before anything goes wrong: does this waiver reserve capacity, for which purposes, and how does a family ask to be considered? You'll want that answer ready on the night it matters.

If Your Parent Is Already in a Hospital or Nursing Home

If you're reading this after an admission you didn't plan, this part is for you. Nothing here is a reason to admit anyone, and no source says an admission earns a waiver slot. But in the waivers MACPAC reviewed, reserved capacity "was most often used for individuals in institutions seeking to transition back to the community," and MACPAC names a federal transition program as one route.

That program is Money Follows the Person (federal demonstration). It funds states to move Medicaid participants from settings such as nursing facilities back into the community, and it's state by state, not a benefit everywhere. To qualify for the federal demonstration, a person must have lived in an inpatient facility for at least 60 consecutive days right before starting, with Medicaid paying for that care. The person must also still need that facility's level of care if not for home and community-based services, and must move into a qualified residence when participation begins.

That makes two separate questions: ask the waiver agency about reserved capacity for people leaving a facility, and ask the facility's social worker whether your state runs the demonstration. Our guide to getting a parent out of a nursing home walks through the referral.

Step 4: Look for Medicaid Home Care That Doesn't Use the Waiver

The waiver is one door. Your state's regular Medicaid plan may be another, and it works differently.

Personal care services are an optional state plan benefit. If your state covers them, that coverage works on different terms from a waiver. A state plan must be in effect throughout the state, and services must generally be equal in amount, duration, and scope for everyone in an eligibility group. The waiver rules, by contrast, expressly let a state cap enrollment and keep a waiting list. State plan coverage still has limits: a state can place appropriate limits on a service based on criteria such as medical necessity or utilization control. Ask whether your state covers personal care and how many hours it allows.

Two more state plan options are worth asking about:

Then there's PACE, the Program of All-Inclusive Care for the Elderly. Your parent must be 55 or older, need a nursing-facility level of care, live in a PACE organization's service area, and be able to live safely in the community. A PACE participant who's eligible for Medicaid pays no monthly premium. MACPAC reported 202 PACE programs across 33 states and the District of Columbia as of May 2026, so check whether one serves your parent's address; the National PACE Association's program finder can help. Our PACE guide covers enrollment.

Step 5: Call Your Area Agency on Aging

Your local Area Agency on Aging is how families reach help like home-delivered meals and homemaker assistance. Find yours through the Eldercare Locator at 1-800-677-1116 or eldercare.acl.gov.

The Older Americans Act funds a menu that can include homemaker help, personal care, chores, case management, and adult day care. Each agency decides how to use its funds for its own area, so services differ from place to place. If you're the one doing the caregiving, the National Family Caregiver Support Program funds counseling, training, and respite through these agencies, with respite limited to caregivers of someone who meets the program's frailty test, such as needing substantial help with at least two daily activities.

Be ready for limits here too. Older Americans Act services aren't an individual entitlement, so no one is guaranteed them. But being on Medicaid doesn't bar your parent from Older Americans Act services. More is in our guide to whether Area Agency on Aging help is free.

What to Do If You're Denied or Still Waiting for a Medicaid Waiver

A denial letter after months of waiting, or months of hearing nothing at all, can make it feel like there's nothing left to try. There is a next step, and it isn't only for families holding a denial. Federal Medicaid law gives anyone whose claim for medical assistance "is denied or is not acted upon with reasonable promptness" a right to a fair hearing before the state agency. That wording covers a claim the agency hasn't acted on with reasonable promptness, not only a written denial. The law's wording doesn't mention waiting lists, so whether a long wait on a capped waiver counts is a question to put to the agency; if your parent's application seems stalled, ask in writing how to request a hearing. Move quickly if you get a denial notice. A state Medicaid agency must allow a reasonable time to ask for a fair hearing, up to 90 days from the date the notice is mailed, and it can set a shorter deadline, so the date printed on your notice is the one that counts. Our guide to Medicaid appeals and fair hearings explains the process.

Frequently Asked Questions

Is the Medicaid waiver waiting list first come, first served?

Not always. Each capped Medicaid 1915(c) waiver sets its own selection order in its approved application, and MACPAC's 2020 review found both date-based and need-based orders in use. If the waiver agency tells you its list is first come, first served, ask two follow-ups: is there any priority category for urgent need, and does the waiver reserve capacity outside the list? Step 2 has the full breakdown.

Can you get Medicaid home care while you wait for a waiver?

Possibly, through Medicaid programs that don't use a waiver slot. State plan personal care, Community First Choice, and PACE can each be an option where your state and area offer them.,, Before your parent starts one, ask the waiver agency whether it changes anything about their place on the waiver list, and get the answer in writing. Step 4 covers each option.

What counts as a crisis slot on a Medicaid waiver?

A crisis slot is reserved waiver capacity, and each Medicaid 1915(c) waiver that reserves capacity names its own purposes in its approved application, so the definition depends on the waiver. If something changes suddenly, such as the family caregiver landing in the hospital, call the waiver agency that day, describe exactly what changed, and ask whether it fits one of the waiver's reserved-capacity purposes.

Can I find out my parent's place on the waiting list?

You can ask the waiver agency directly. The federal Medicaid HCBS waiver waiting-list reporting rule at 42 CFR 441.311(d)(1), which starts July 9, 2027 (or, where a state delivers this care through managed care, the first managed care rating period beginning on or after that date), covers list size and average waits for the whole list, not individual positions. If no position number is available, ask instead for the date your parent was added to the list and the waiver's selection method.

Learn More

MedicaidMedicaid HCBS Waivers by StateMedicaid HCBS waivers pay for care at home instead of a nursing facility. How 1915(c) waivers work, who qualifies, why waitlists happen, and your state's guide. Care TypesHow to Get a Parent Out of a Nursing HomeHow to get a parent out of a nursing home: ask staff for a Section Q referral to the local contact agency. What happens next, who decides, and how to pay. MedicaidMedicaid PACE ProgramPACE, the Program of All-Inclusive Care for the Elderly, wraps your Medicare and Medicaid care into one plan. Who qualifies, the real cost, and where it exists. MedicaidMedicaid Appeals and Fair HearingsDenied Medicaid? You can appeal, and one deadline decides whether your benefits keep flowing during the appeal. Know your fair-hearing rights and act fast. MedicaidNursing Home Level of Care by StateNursing home level of care by state: no federal tool is required, so each state picks its own. See every state's assessment, who decides and how often. CaregiverWhat Is the Older Americans Act?The Older Americans Act is the federal law behind nearly every free senior service in America. What it funds, who qualifies at 60, and how to reach it.

Find personalized help working out what to ask your parent's waiver agency at brevy.com.

The information on Brevy.com is for educational purposes only and is not a substitute for professional legal, financial, or medical advice. Rules vary by state and program and change frequently. Always verify with the relevant agency or a qualified professional. Brevy is not a law firm, financial advisor, or healthcare provider.

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Expert eldercare guidance from Brevy's team of healthcare professionals and researchers.