Starting July 2027, States Must Publish Their Waiting List Numbers. Here’s How to Use Them.
For more than forty years no state had to tell anyone how long people wait for home and community based services. A federal rule changes that on July 9, 2027, and the reporting includes a line item most families have never seen measured.
States do not stand up new reporting systems in the last quarter before a deadline. Whatever your state publishes in 2027 is being designed right now, and the design decisions are being made without families in the room. A written question to your state Medicaid agency asking how it will count people waiting, and whether it screens them for eligibility first, is the single cheapest piece of advocacy available this year. It is also on the record.
Four decades of silence
Federal law has let states cap waiver enrollment since the early 1980s. Until this rule, no state had to report who was waiting or for how long.
Annual, not one time
42 CFR 441.311(d) requires reporting every year. That turns a snapshot into a trend line, which is what makes it usable in a budget argument.
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Data points
Number waiting, average wait for new enrollees, how the list is maintained and screened, time from approval to service start, and percent of authorized hours actually provided.
Authorized versus provided
Subsection (d)(2)(ii) requires the percent of authorized hours for homemaker, home health aide, personal care, and habilitation services that were actually delivered. Nobody measures this today.
Screening gets exposed
States must describe how they maintain the list, including whether they screen for eligibility and how often they re-screen. Unscreened lists run longer and mean less.
Two provisions already slipped
CMS delayed the fee-for-service grievance requirement to December 2027 and payment transparency to January 2029. The waiting list reporting date has not moved.
What 42 CFR 441.311(d) requires
I asked how many people were ahead of my son. The supports coordinator was not being cagey. She told me plainly that she did not have that number, that her agency did not report it anywhere, and that as far as she knew nobody in the state was required to know it. She was right, and that is the part that took me a while to accept.
How to be ready before the data lands
Do these in order
- 1Write your state Medicaid agency now and ask how it plans to collect the 42 CFR 441.311(d) data, and whether families can see the draft methodology.
- 2Ask specifically whether your state screens people for eligibility before adding them to a list, because that single choice changes every number that follows.
- 3Ask your CMHSP for your own placement date and position in writing this year, so you have a personal baseline to compare against the first public report.
- 4When the first report publishes in 2027, compare your region against the rest of the state rather than against the national average.
- 5Take the percent-of-authorized-hours figure to your CMHSP board in public comment. That is the number that describes your actual week.
- 6If your state misses the deadline or publishes something unusable, say so in writing to CMS and to your congressional delegation.
What to keep so you can check their math
- The date you applied and the date the agency recorded you
- Which waiver the list is for, by name
- Whether you were screened for eligibility, and when
- The hours authorized in your current plan of service
- The hours actually delivered each month, logged
- Every month a shift went unfilled, with dates
- The date services were approved and the date they started
- Any written statement that a number is unavailable
The rule does not shorten anybody’s wait. It makes the wait countable, and countable is the precondition for everything else.
A supports coordinator in Oakland County told me she did not know how many families were ahead of my son, that her agency did not report that number anywhere, and that she was not aware of anyone in Michigan who was required to know it. I spent about a year assuming she was deflecting. She was not. She was describing federal law.
Since the early 1980s, federal Medicaid law has allowed states to cap enrollment in home and community based services waivers. That single permission is the engine behind every waiting list in this country. And for more than forty years, the states that used it were under no federal obligation to tell anybody how many people were waiting, or how long.
That changes on July 9, 2027.
What the rule actually says
On July 9, 2024, CMS finalized the Ensuring Access to Medicaid Services rule. Buried in it, at 42 CFR 441.311(d), is a reporting requirement that states must comply with beginning three years after the effective date. Three years after July 9, 2024 is July 9, 2027.
Here is what states will have to report, annually, and I want to walk through it in the regulation’s own order because the sequence matters.
Subsection (d)(1)(i) requires a description of how the state maintains the list of people waiting to enroll, including whether the state screens those people for eligibility and how frequently it re-screens them.
Subsection (d)(1)(ii) requires the number of people on the list.
Subsection (d)(1)(iii) requires the average amount of time that people newly enrolled in the past twelve months spent on the list before enrolling.
Subsection (d)(2)(i) requires the average time from when homemaker, home health aide, personal care, and habilitation services were initially approved to when those services actually began.
Subsection (d)(2)(ii) requires the percent of authorized hours for those same services that were actually provided in the past twelve months.
The one nobody is talking about
Read that last one again, because it is the sleeper in the entire rule and I have not seen a single family-facing article treat it as the headline.
Every family reading this knows the gap between what the plan of service says and what actually happens. Twenty hours authorized. Eight delivered, because the provider could not staff the rest. The plan says you are receiving a service. Your Tuesday says otherwise. Right now that gap is invisible to every system that measures anything, which is precisely why it has been allowed to grow.
Starting in 2027, states have to publish the percentage. Not per family, and not in a form that will fix your individual case. But in aggregate, by state, annually, in public.
Why screening is the quiet variable
Subsection (d)(1)(i) asks states to describe whether they screen people for eligibility before putting them on a list. That sounds procedural. It is the single largest determinant of whether any of these numbers mean anything.
KFF has been showing this for years. States that do not screen carry much longer lists, because those lists include people who may never qualify, and much longer average waits. States that do screen report shorter lists that are more real. Compare an unscreened state to a screened one on raw list size and you learn nothing at all.
So when the first reports land, the screening description is the thing you read first and the list size is the thing you read second. Anyone who quotes one without the other, in either direction, is telling you a story rather than a number. I would rather families learn that now than in 2027.
Two provisions have already slipped, and one has not
I want to be honest about the risk here rather than sell you a deadline that might move.
CMS has already delayed pieces of this rule. The fee-for-service grievance system requirement, originally due July 2026, was pushed to December 2027. The payment transparency and interested parties provisions were pushed to January 2029. The 80 percent compensation pass-through, the provision requiring that most of the payment for these services reach the worker, does not bite until July 9, 2030.
The waiting list and access reporting at 441.311(d) has not moved. As of now it stands at July 9, 2027.
That is a real date and it is also a date with a history of neighbors that moved. Which is an argument for paying attention this year rather than in 2027, not an argument for shrugging.
What to do in the eighteen months before it lands
Ask your state what it is building. States do not stand up new reporting infrastructure in the final quarter. Whatever your state publishes in 2027 is being designed right now, by people who have not heard from a single family. Write your state Medicaid agency and ask how it intends to count people waiting and whether it screens them first. Ask for the draft methodology. You may not get it. The question is still on the record.
Build your own baseline. Get your placement date and your position in writing this year. Log the hours authorized against the hours delivered, every month. When the state publishes an aggregate percent-of-authorized-hours figure, you want your own household number sitting next to it. A family who can say the state reported eighty two percent and my son received forty is doing something no advocacy organization can do for them.
Plan to read it regionally. Michigan will report as a state. Michigan does not deliver as a state. It delivers through ten prepaid inpatient health plan regions with separate allotments and separate practices. The first thing worth asking, the day the state report publishes, is whether the same numbers exist by region, and if not, why not.
Do not expect it to fix anything by itself. This is a transparency rule. It does not create a slot, fund a program, or shorten a queue. What it does is end the era when the honest answer to how long is my son waiting was that nobody was required to know.
I spent a year thinking that coordinator was managing me. She was not. She was working inside a system that had never been asked the question. In 2027 it gets asked, in writing, every year, by federal regulation. What we do with the answer is on us.