650,000 People Are Waiting for Medicaid Home Care. Here’s What Your Spot in Line Actually Means.
The average wait is 34 months. But more than half the people on these lists have never been screened for eligibility, so the first thing worth finding out is which kind of list you are on.
About 650,000 people are on waiting lists for Medicaid home and community based services, the programs that pay for support at home instead of in an institution. That’s up 7% from last year. The average wait is 34 months. For people with intellectual or developmental disabilities, who are 72% of everyone waiting, it’s 38 months.
Those numbers came out yesterday, October 5, from KFF, which has tracked this since 2016.
Three years is the headline. But if you or your child is on one of these lists, the more useful question is which kind of list you’re on, because in a lot of states it does not mean what you think it means.
Waiting list or interest list
Forty states keep a list. They do not all work the same way.
Thirty-two states screen you for eligibility before adding your name. Someone checks whether you actually qualify for the waiver, and then you go in the queue. Your spot means something: you are an eligible person waiting for a funded slot.
Eight states add names without screening anyone first. Call, ask, get added. Nobody has checked whether you qualify, and nobody will until your name comes up, sometimes years later. Some states call this an interest list, which is the more honest word for it.
Here’s the part worth sitting with. Those eight states are more than 56% of everyone waiting nationally. So more than half of that 650,000 is people who have not been told whether they qualify for the thing they’re waiting for.
You can see it in the numbers. In states that screen, 61% of the people waiting have an intellectual or developmental disability. In states that don’t, it’s 78%.
This is not a reason to relax about the number. It is a reason to find out which list you’re on, because the answer changes what your place in line is worth and what you should be doing while you hold it.
Why your application date matters more than anything else
Most of these lists run on the date your application or request was received. Not the date you were found eligible. Not the date you called to check. The date the state wrote down.
That date is the single most valuable thing you have in this system, and it is also the thing most likely to be wrong, lost in a transition between caseworkers, or recorded as the day someone finally processed your paperwork rather than the day you sent it.
If you have not confirmed your date in writing, you do not actually know where you are in line. You know where somebody told you over the phone once.
What to do this week
Email your state’s waiver intake office and ask for four specific things. Not “can you check on my status,” which gets you a phone call you can’t prove happened. These four, in writing:
Subject: Written confirmation of waiver waiting list status
Hello,
I’m requesting written confirmation of the following for [name], date of birth [date], case or ID number [number if you have one]:
- The date my application or request for waiver services was received.
- My current position on the waiting list, or how position is determined if numbers aren’t given.
- Whether an eligibility screening or determination has been completed, and if so, the date and outcome.
- Which waiver or program this list is for.
A written reply by email is fine. Thank you.
[Your name and contact details]
Four questions, no argument, nothing anyone has to defend. Save the reply where you can find it in ten seconds. If you have been doing this a while, that is your Proof Folder, and this email belongs in it.
If the date they give you is later than the date you actually applied, that gap is worth raising right away, with whatever you have showing when you sent it. Fixing a date error at month four is a conversation. Fixing it at month thirty is an argument you may not win.
The part almost nobody is told
KFF makes a point in this report that gets lost every year it’s published: most people on a waiting list stay eligible for other Medicaid home care while they wait.
A waiver is one route to support at home. It is not the only one. Depending on your state, regular Medicaid may already cover home health, personal care, or therapy, and none of that requires your waiver slot to come up first.
So the question to ask alongside your place in line is: what am I eligible for right now, today, while I wait. That is a different question from “where am I on the list,” and the person answering the first one may not volunteer the second.
This is also exactly the kind of question a Navigator can work through with you, because the answer depends on your state and your situation in ways no article can cover honestly.
What the number does not tell you
One honest caveat, because the 650,000 will get quoted a lot this month and it is softer than it sounds in both directions.
It undercounts. States that don’t cover a service, or that cap how much they provide, or that simply don’t have enough providers, generate no waiting list at all. Nobody is counted as waiting for something their state never offered.
And it overcounts, in the sense that a chunk of it is people who have not been screened and some of whom will not qualify.
What it measures reliably is this: across 40 states, the number of people who have raised their hand for help at home is going up, and the time between raising your hand and getting an answer is now measured in years.
You cannot shorten that line by yourself. You can make sure you are correctly on it, with the right date, and that you are getting everything you are already entitled to while you wait.
If you’re stuck and not sure where to start, tell us what’s happening. If your child’s therapy stopped because coverage lapsed rather than because of a waiver wait, that’s the gap we fund directly.
Figures in this piece are from KFF’s A Look at Waiting Lists for Medicaid Home and Community Based Services, published 5 October 2026.
Frequently asked questions
What's the difference between a waiting list and an interest list?
A waiting list usually means someone has checked that you qualify and you're queued for a funded slot. An interest list usually means your name was written down and nobody has assessed anything yet. Thirty-two states screen before adding you. Eight don't. The word your state uses is less reliable than the answer to "has an eligibility determination been completed for us?", which is why that's one of the four questions in the email above.
How long will I actually wait?
The national average is 34 months, and 38 months for people with intellectual or developmental disabilities. Your state, your waiver and your assessed level of need all change that, sometimes a lot. An average across 40 states is a weather forecast, not a date.
Does being on the waiting list mean I've been approved?
Not necessarily, and this is the thing most worth checking. In states that don't screen first, being on the list means your name is recorded, nothing more. Ask whether an eligibility determination has been completed, and get the answer in writing.
Can I get any help while I wait?
Often yes. Most people on a waiting list remain eligible for other Medicaid home care during the wait. Depending on your state, that can include home health, personal care or therapy, none of which require your waiver slot to come up. It's a different question from "where am I on the list," and you usually have to ask it separately.
What happens if I move to another state?
Waivers are run state by state, so a place on one state's list generally doesn't carry over to another. If a move is possible, ask the new state how their list works before you go, because the answer may affect when you apply and the date you end up with.
How do I find out my place in line?
Email your state's waiver intake office and ask in writing for your application received date, your current position, whether an eligibility screening has been completed, and which waiver the list is for. Phone calls leave no record. The template above covers all four.