The two bills that could actually save your services
One puts emergency money into a collapsing workforce for two years. The other removes the structural rule that makes an institution bed an entitlement and a support worker in your home a favor. Both need cosponsors.
Call your U.S. House member’s district office and ask: “Is the Representative a cosponsor of H.R. 4029, the HCBS Relief Act?” That is the whole call. If yes, thank them and ask about the HCBS Access Act. If no, ask what it would take. Then do the same with both Senate offices on S.2076. You can find your members at congress.gov, and the entire exercise takes about fifteen minutes.
HCBS Relief Act
S.2076 and H.R.4029. A 10 point FMAP increase for HCBS during fiscal 2026 and 2027, capped at 95 percent.
What the money can do
Raise DSP reimbursement, fund paid leave and hazard pay, serve people on waiting lists, support family caregivers.
HCBS Access Act
The structural one. It puts home based care on equal footing with institutional care instead of leaving it behind a waiver, which is the mechanism that produced waiting lists in the first place. Reintroduced by Rep. Dingell and Rep. Schakowsky in April 2026.
Why the waiver design matters
A 1915(c) waiver lets a state cap enrollment. That single permission is the reason a person can be eligible for a service, need the service, and wait 37 months anyway. Nursing facilities have no such cap. Remove the cap and the waiting list has no legal basis to exist.
People waiting
More than 600,000 on Medicaid HCBS waiting or interest lists in 2025 across 41 states, up 14 percent in a year.
Michigan connection
Rep. Debbie Dingell of Michigan’s 6th District leads both bills in the House. That is leverage a Michigan family can actually use.
What each bill would do
10 point increase, 95 percent cap
Fiscal 2026 and 2027, spend by Sept 2029
Rate increases, paid leave, hazard pay
Funds may serve people currently waiting
Respite and caregiver compensation
Sen. Lujan, Rep. Dingell, June 12, 2025
Home care on par with institutional care
Removes the waiver bottleneck
Federal match to build capacity and wages
Rep. Dingell and Rep. Schakowsky, April 2026
Ellen called her House office about the HCBS Relief Act and got a staffer who had never heard of it. Six weeks and four calls later, that staffer sent her the cosponsor request form her office had submitted. Nothing about Ellen’s argument was novel. What changed was that a bill nobody in that office had heard of became a bill four constituents had called about.
How to actually move a federal bill from your kitchen
Escalation ladder
- 1Look up your members and the bill status on congress.gov.
- 2Call the district office. Ask the cosponsor question.
- 3Follow up in writing with your one paragraph story.
- 4Ask for a fifteen minute meeting with the health staffer.
- 5Bring your provider or CMH with you to that meeting.
- 6Report the answer publicly. Silence is also information.
What makes a call count
- Your full address, so they can verify the district
- The bill number, said out loud, twice
- One sentence naming your family member
- One sentence on what happens without the service
- A specific ask: cosponsor this bill
- The staffer’s name and email
- A written follow up within 24 hours
- A calendar reminder to call again in three weeks
A congressional office logs constituent contacts by bill number. Your story is what makes the call memorable. The bill number is what makes it countable.
Two pieces of federal legislation are sitting in committee right now that would change your family’s life more than anything your Community Mental Health board will do this decade. Almost nobody in your support group has heard of either one. I did not know their bill numbers until I made myself learn them, and I write about this for a living. That gap, between what would help and what families can name, is the single cheapest thing to fix in all of disability advocacy.
So here they are. Bill numbers first, feelings second.
The HCBS Relief Act: S.2076 and H.R.4029
Introduced June 12, 2025 by Senator Ben Ray Lujan with sixteen Senate cosponsors, and in the House by Representative Debbie Dingell of Michigan’s 6th District. What it does is straightforward: a ten percentage point increase in the Federal Medical Assistance Percentage for home and community based services during fiscal years 2026 and 2027, capped at 95 percent, with the money required to be spent by September 30, 2029.
FMAP is the share of Medicaid costs the federal government pays. Bumping it ten points for HCBS means that for every dollar a state spends on community services, it gets substantially more federal money back. States respond to that. They have responded to it before, most recently under the American Rescue Plan’s temporary HCBS enhancement, which produced measurable wage increases in states that used it well.
The bill text is specific about what the money can fund, and the list reads like it was written by somebody who has actually met a direct support professional. Higher reimbursement rates for DSPs and home health agencies. Paid sick, family, and medical leave. Hazard pay, overtime, and shift differentials. Serving people currently on waiting lists. Respite and compensation for family caregivers. Recruitment, training, and job stability programs. Assistive technology.
The HCBS Access Act: the one that actually changes the rules
Representative Dingell and Representative Jan Schakowsky reintroduced the HCBS Access Act in April 2026. This one is the structural fix, and it deserves more attention than it gets.
Here is the problem it addresses. Under federal Medicaid law, if you qualify for institutional care, you get it. Full stop. It is an entitlement. If you want to receive equivalent support in your own home, your state has to operate a waiver, and a 1915(c) waiver is permitted to cap enrollment. That permission, granted in 1981, is the legal machinery that produces waiting lists.
Read that again, because it is the whole ballgame. The waiting list is not a funding shortage that happens to affect community services. It is a design feature that exists only on the community side, because only the community side is allowed to have one.
The Access Act would put both options on equal footing, eliminating the waiver requirement so that a person who needs support at home does not have to wait years for permission to receive it there. It also carries workforce provisions: enhanced federal match to help states build capacity, wage stability for direct care workers, family caregiver training, and better quality measurement.
What 600,000 people waiting actually means
KFF’s 2025 analysis found more than 600,000 people on Medicaid HCBS waiting or interest lists across 41 states, a 14 percent increase in a single year. Average wait, 32 months. For people with intellectual and developmental disabilities, 37 months.
KFF is careful to note that waiting lists undercount unmet need, and they are right. Lists do not capture people in states that never covered the service, people enrolled in programs that ration hours rather than slots, or people whose provider has a waiting list even though the state does not. When your provider cannot staff the shift, you are not on any state list. You are just not receiving the service.
Thirty seven months. Think about what your family member’s life looks like across three years and one month of waiting for the thing that would have made those years work. Then remember that no nursing facility applicant anywhere in America waits thirty seven months, because federal law does not permit it.
The uncomfortable part about federal bills
I am going to be honest with you rather than motivational, because you have had enough of the other thing.
The HCBS Access Act has been introduced in multiple Congresses and has not passed. The HCBS Relief Act was introduced in June 2025 into a Congress that had just enacted the largest federal Medicaid reduction in history. Neither bill is on a clear path to a floor vote. If I told you that four phone calls would get these enacted, I would be doing the inspiration porn thing I complain about constantly.
Here is what is true instead. Cosponsor counts are the currency of pre floor legislating. They determine which bills leadership treats as live, which ones get folded into larger packages, and which ones a committee chair can be persuaded to notice. A bill with forty cosponsors and a bill with four are different objects, and the difference is made entirely of constituent phone calls.
And Michigan families have a specific asset here. Debbie Dingell leads both bills in the House. If you live in Michigan, you are represented by a delegation that includes the primary sponsor of the two most important HCBS bills in Congress. Your calls to the rest of that delegation carry a weight they would not carry in Arizona.
The fifteen minute version
Open congress.gov. Find your representative and both senators. Call each district office, not Washington, because district offices route constituent contacts more reliably. Ask whether the member is a cosponsor of H.R. 4029 or S.2076. Write down the answer.
If yes, thank them and ask about the HCBS Access Act. If no, ask what information the office would need to consider it, and then send exactly that, plus one paragraph about your family member by name.
Then do the least glamorous and most effective thing in all of advocacy: put a reminder in your phone for three weeks out and call again. Ellen’s office did not respond to her argument. It responded to the fourth call.
These bills will not pass because families deserve it. Nothing passes because anyone deserves it. They pass when the cosponsor list gets long enough that ignoring them costs more than moving them. That list is made of people like you, one fifteen minute phone call at a time. Now we know what we are fighting.