Please Help Protect Kentucky Waiver Services
I have never been one to ask people to like, share, call, email, or do anything just because I posted something.
That is not really my style.
But sometimes staying quiet becomes its own kind of problem.
Right now, Kentucky families who depend on Medicaid waiver services are facing a very real threat. The Department for Medicaid Services has announced a 4 percent provider reimbursement reduction connected to the Medicaid budget impact from House Bill 500.
That may sound like government language. It may sound like a small percentage. Heck, it may sound like one of those things that happens somewhere in Frankfort and never really touches everyday families.
But it does.
It touches families like mine. Sadly, it touches children and adults with disabilities, complex medical needs, developmental disabilities, autism, neurological conditions, and lifelong support needs.
Also, it touches the providers and caregivers who help keep those families afloat. It touches the people who are already living close to the edge of what they can manage. For us, it touches my son, H.
Why This Matters to Our Family
H became critically ill at age three.
He was diagnosed with idiopathic pediatric Opsoclonus Myoclonus Syndrome, also called OMS. It is a rare neurological autoimmune condition. In many cases, children with OMS are screened for neuroblastoma because of the known connection between OMS and cancer.
H was tested.
He was scanned, had many lumbar punctures, and they looked for cancer. They looked for a cause. They checked everything they knew to check.
No cancer was ever found and there was no clear cause was ever found.
His case was considered idiopathic, unusually severe, and life-changing. Doctors did not have a neat explanation for why his body did what it did.
H is 12 now, and he is still living with the effects of that disease.
That matters because waiver services are not extras for our family. They are not bonus services or luxuries.
They are part of the long-term support system that helps him continue to grow, function, and remain supported in his home and community.
The Waiver Wait Is Already Too Long
H was on the Home and Community Based Waiver for more than eight years.
Our family waited approximately nine years for a Michelle P. Waiver spot before he finally received one.
Nine years.
That is almost a childhood.
Families do not wait that long for optional services. They wait because the need is real because the system is already stretched thin. Families wait because there are not enough supports to meet the need that already exists.
So when a family finally gets access to waiver services, there should be stability.
There should be some sense of relief.
There should not be a new fear that the provider system may be weakened by reimbursement cuts.
A Provider Cut Becomes a Family Cut
The June 8, 2026 letter from the Department for Medicaid Services says there will be a 4 percent reduction in Medicaid provider reimbursement rates for multiple provider types.
That includes services tied to:
Home and Community Based Waiver
Michelle P. Waiver
Supports for Community Living
I understand that 4 percent may not sound like much to someone looking at a budget.
But in real life, that 4 percent can mean a lot.
It can mean fewer providers willing or able to serve waiver participants. Also, it can mean agencies struggling even more to hire and keep qualified staff. It can mean direct support professionals leaving the field because they cannot afford to stay which means more turnover.
A reduction can mean fewer options, less consistency, and families having to fill in even more gaps. For many children and adults who depend on these services, consistency is not just nice. It is necessary.
Consistency helps people stay regulated, continue progressing, helps keep people safe, and it helps families breathe.
When provider reimbursement is cut, the cut does not stay in a spreadsheet. It trickles down into living rooms, bedrooms, therapy spaces, day programs, transportation routines, staffing schedules, and family calendars.
Provider cuts become service cuts.
That is the part I need people to understand.
These Services Help People Stay in Their Homes and Communities
Waiver services help people with disabilities and complex needs remain connected to their families, homes, and communities.
They help families avoid more restrictive and often more expensive levels of care. Waivers help provide dignity, create stability, and help people continue to develop and grow across their lifespan.
Children do not stop needing support because they age. Adults with disabilities do not stop being valuable because their care is expensive. Families do not stop needing help because the state budget is uncomfortable.
People like H are not line items.
They are sons, daughters, brothers, sisters, grandchildren, friends, neighbors, and community members.
They are human beings with stories, needs, progress, setbacks, gifts, and futures.
What I Am Asking
I am asking anyone who cares about Kentucky families to speak up.
You do not have to be directly affected to help. Also, you do not have to know every detail. the letter does not have to be perfect (I provided an example to help).
Send a short email, make a phone call. You can share this with someone who may be willing to do the same.
Please ask Kentucky lawmakers and state leadership to protect Home and Community Based Waiver, Michelle P. Waiver, and Supports for Community Living services from this 4 percent provider reimbursement reduction.
Please ask them to support an immediate funding solution.
Please ask them to protect waiver participants, families, caregivers, and providers.
Families like mine need more than sympathy.
We need people willing to speak up.
People to Contact
Senator Danny Carroll
Danny.Carroll@kylegislature.gov
Representative Steven Rudy
Steven.Rudy@kylegislature.gov
Representative Kim Holloway
kim.holloway@kylegislature.gov
Representative Randy Bridges
Randy.Bridges@kylegislature.gov
Representative Chris Freeland
Chris.Freeland@kylegislature.gov
Representative Jason Petrie
Jason.Petrie@kylegislature.gov
Senator Christian McDaniel
Chris.McDaniel@kylegislature.gov
Representative Kimberly Poore Moser
Kimberly.Moser@kylegislature.gov
Senator Stephen Meredith
Stephen.Meredith@kylegislature.gov
Speaker David Osborne
David.Osborne@kylegislature.gov
Senate President Robert Stivers
Robert.Stivers@kylegislature.gov
Department for Medicaid Services / CHFS
CHFS.Listens@ky.gov
Governor Andy Beshear
Call: 502-564-2611
You can also use the official Governor contact form online.
Kentucky Legislative Message Line
1-800-372-7181
A Short Email You Can Send
Subject: Please Protect Kentucky Waiver Services
Dear [Representative/Senator/Governor/Commissioner Name],
I am writing to ask you to protect Kentucky waiver services from the 4 percent Medicaid provider reimbursement reduction.
Please protect Home and Community Based Waiver, Michelle P. Waiver, and Supports for Community Living services. Provider reimbursement cuts can quickly become service cuts for families who depend on consistent care, qualified providers, and long-term support.
Families who rely on these services are not asking for extras. They are asking for stability, safety, access, and dignity for children and adults with disabilities and complex needs.
Please support an immediate funding solution that protects waiver participants, families, and the providers who serve them.
Sincerely,
[Your Name]
[City, Kentucky]
Message for the Legislative Phone Line
Call: 1-800-372-7181
You can say:
My name is [your name], and I live in [your city/county], Kentucky. I am asking Kentucky lawmakers to protect Home and Community Based Waiver, Michelle P. Waiver, and Supports for Community Living services from the 4 percent Medicaid provider reimbursement reduction. Provider cuts become service cuts for families who depend on these supports. Please support an immediate funding solution to protect waiver participants, families, and the providers who serve them.
Message for the Governor’s Office
Call: 502-564-2611
You can say:
My name is [your name], and I live in [your city/county], Kentucky. I am calling to ask Governor Beshear’s office to pursue every available option to protect Home and Community Based Waiver, Michelle P. Waiver, and Supports for Community Living services from the 4 percent Medicaid provider reimbursement reduction.
Provider cuts become service cuts for families who depend on these supports. Please work with CHFS, DMS, and legislative leadership to find an immediate funding solution that protects waiver participants, families, and the providers who serve them.
One Last Thing
This is not about politics for me. It is about H and all the families that could be affected by these cuts. As our family waited 9 years, there are many families still waiting for help. This is about caregivers and providers who are already stretched thin. It is also about children and adults who deserve to be supported in their homes and communities. This is about whether we believe vulnerable Kentuckians are worth protecting before the damage is already done.
Please speak up, share, call or email.
Families like mine need to be heard.
