CMS_Call_To_Action_June2026.docx

CALL TO ACTION

Send a Letter to CMS: Demand Accountability for Home-Based Care

June 2026 | Versión en Español — Ver Aquí

BACKGROUND

“Authorization on paper is not care at the door.”

A federal court just ruled that states must actually deliver the home care hours people with disabilities are authorized to receive, and now CMS has to decide whether that standard applies everywhere, not just in Florida.

In Florida, families went to court because their children were authorized for Private Duty Nursing hours that were never filled. Shifts went unstaffed. Families covered the gaps themselves. The 11th Circuit Court of Appeals upheld the ruling that this is a failure to provide services in the most integrated setting appropriate to a child's needs, and that states have an obligation to ensure meaningful access to home-based care, not just authorization for it. CMS now has to decide how it will hold every state to that standard.

People inside CMS have signaled that individual letters from real people carry weight right now. Letters describing what home-based care looks like in your life, and what losing it would mean, are what decision-makers need to see. Every state is different, some have strong programs, others have waitlists stretching years. Federal policy shapes what states can and must do, and families speaking directly to CMS right now is one of the most direct ways to influence that.

This action is for anyone whose life depends on Medicaid Home and Community Based Services, including Private Duty Nursing, personal care, Medicaid waivers, Katie Beckett programs, and unskilled direct support. The time for action is now!

ACTION 1 — Send a Personalized Letter to CMS

We have a template to get you started, but a few sentences in your own words about your actual situation will make your message significantly more powerful. Tell them what home-based care makes possible for you or your family member. Tell them what losing it would mean.

Fill out the short form to generate your personalized letter:
https://forms.gle/aYsyxQn38MCCkMXB8

Send your completed letter to:

Dr. Mehmet Oz, CMS Administrator: mehmet.oz@cms.hhs.gov
Robert F. Kennedy Jr., Secretary of Health and Human Services: Robert.KennedyJr@hhs.gov

SAMPLE LETTER Do not copy word for word — your own story is what makes it land.

Dear Administrator Oz and Secretary Kennedy,

My name is [Your Name] and I am a [parent/self-advocate/direct care worker/family caregiver] from [Your State]. I am writing to ask CMS to take clear action to ensure that states are held accountable for delivering the home-based care hours that people with disabilities are authorized to receive.

A federal court in Florida recently ruled that states must ensure at least 90% of authorized care hours are actually filled. Both the District and Circuit courts found that when families cannot access adequate home care, people with disabilities face unnecessary institutionalization. I am writing because that ruling should apply everywhere, not just in Florida.

[Add 2 to 3 sentences here about your situation. What services does your family member or you personally rely on? What happens when those hours go unfilled? What would institutionalization mean for your family?]

I am asking CMS to:

Require all states to meet the 90% fill threshold for authorized home care hours, consistent with the Florida ruling.
Make public each state's data on how well they are meeting that standard, so families can see what is actually happening in their state.
Provide clear guidance on how states will be monitored and held accountable for closing the gap between authorized hours and hours actually delivered.

Home-based care is not a luxury. It is what allows people with disabilities to live in their communities, stay with their families, and avoid institutionalization. My family depends on it. Thousands of families across this country do too. Thank you for your time and your consideration.

Sincerely,

[Your Name] | [City, State] | [Your Contact Information]

ACTION 2 — Copy Your Members of Congress

Federal Medicaid policy is shaped by both Congress and CMS. After you send your letter to CMS, forward it to your U.S. Senator and U.S. Representative and let them know you sent it. This can often be done through their congressional website.

In your letter to Congress, mention that you are also contacting Dr. Oz and RFK Jr., and emphasize the need for the federal government to establish a process to ensure states meet the 90% fill rate.

To find your members of Congress, visit: https://www.congress.gov/members/find-your-member and enter your home address.

ACTION 3 — Make Noise on Social Media

Public pressure matters. Post this week and tag fellow advocates, disabled individuals, caregivers, your members of Congress and local media.

For Facebook:

Federal officials are deciding right now whether states will be required to actually deliver the home care hours that people with disabilities are authorized to receive. Families in Florida went to court and won. Now CMS needs to hear from families everywhere. I sent my letter. Here is how to send yours. https://forms.gle/aYsyxQn38MCCkMXB8 [Tag your members of Congress and local media]

For X (Twitter):

CMS is deciding whether to hold states accountable for delivering authorized home care hours. A court in FL already said they must. Now families everywhere need to say it too. Send your letter here: https://forms.gle/aYsyxQn38MCCkMXB8 #Medicaid #DisabilityRights #HomeBasedCare

For Instagram:

Home-based care is the difference between someone living with their family and being placed in an institution. Federal officials are deciding right now whether states have to actually deliver the care hours people are authorized to receive. A court in Florida already said they must. We need families, self-advocates, and care workers across the country to send letters directly to CMS this week. Link in bio to take action. [Tag your members of Congress and local media in the comments.]

ACTION 5 — Share This Call to Action and Stay Connected

Most people do not know this conversation is happening right now at the federal level. Sharing this with even one or two people could make a real difference.

Who to share this with:

Self-advocates living with disabilities who use Medicaid home-based services.
Families and caregivers supporting someone with a disability at home.
Direct care workers and provider agency staff.
Support coordinators and case managers.
Advocates and community organizations.

When you share, remind people:

This window will not stay open. Letters sent now reach decision-makers while the conversation is still live.
Personal messages carry far more weight than copied ones.
Two or three sentences in your own words about your real situation will matter more than a perfect letter.

After you send your letter, leave a comment so we can track every single one.

Join the national group. Find your state. Connect with your people.

FIND YOUR STATE COALITION

STATE	COALITION / ORGANIZATION
National	National Pay Family Caregivers National Coalition
Arizona	Raising Voices Coalition
Colorado	Impacted Caregivers of Colorado
Georgia	Georgia Self Direct Now and Comp Waiver \| We Are GAAP
Idaho	Idaho Keep Parents & Spouses As Paid Caregivers For Those With Disabilities
Illinois	DSCC/MFTD Waiver Families
Indiana	Indiana Family Caregivers
Kentucky	KY Waiver Discussion Group
Maine	Family Caregivers of Maine
Massachusetts	CCM Family Caregivers in Crisis (and Allies)
Missouri	Parents Supporting Parent Providers in Missouri
New York	Families for Paid Parent Caregivers \| The Voices of the Medically Fragile of New York
North Carolina	PDN Families of North Carolina \| Parent/Relative as Providers
Ohio	End Ohio's Parent Penalty \| Ohio Developmental Disability Caregivers
Oregon	Pay Family Caregivers - Oregon \| Advocates for Disability Supports
Pennsylvania	Pediatric Parent Caregivers of PA Fight Back
South Carolina	Parents Should Be Paid Caregivers of Children with Disabilities in SC
Tennessee	Pay Family Caregivers - Tennessee
Virginia	Parents of Children on VA Waivers
Washington (State)	Paid Parent Caregivers in WA State
Wisconsin	Coalition for Paid Parent Caregiving in Wisconsin

Home-based care is not a luxury. It is what keeps families together.

Take action today: https://forms.gle/aYsyxQn38MCCkMXB8