08/17/2026
This is Clara. She’s 15 and has a genetic condition called Rett Syndrome. She requires a high level of care. I don’t post about her and our many struggles on social media about managing her care. It’s kind of a bummer. Today, I feel compelled to pull the curtain back a bit….For a long time I’ve pushed off planning for our future after school but as she inches closer to 18, I’ve been diving deep into what our future will look like…especially since Medicaid is facing nearly $1 Trillion is cuts starting in 2027 from the “One Big Beautiful Bill”. These cuts will affect the most vulnerable individuals in our communities.
Surprisingly, there is no cohesive care standard across the country and each state manages their Medicaid services to the disabled community differently…in Florida she receives NO community based care supports. The only way to receive those supports is through a Medicaid waiver. In Florida there are approximately 20,000 people on the waitlist. It’s also interesting to note that the state of Florida has approximately $1 Billion of unspent funds for Medicaid waiver services. I have little hope that she will actually receive services unless Florida makes changes to provide all those who need it appropriate supports and services.
Several years ago the previous administration & DOJ sued Florida to force the state to improve its services assuring that disabled individuals have access to community support and care ( this is referred to as the Olmstead precedent)…remember the 20,000 people on the waitlist. The case was won by the federal gov’t then appealed by the state. The current DOJ and administration, recently put out a memo that they will not be enforcing states provide those supports and has told the courts in Florida, never mind no intervention is necessary to force Florida to improve services and integration.
This sets precedent across the country.
I say all this because one day you or a loved one may join this community as an individual with disabilities or caregivers to a child or parent with complex care needs. If the best care for them is in your home and NOT in an institution you should pay attention.
You can’t plan for this life. One spinal cord injury, a tiny piece of missing genetic code, cancer a stroke etc….It hits like a freight train that you hold onto with bloody fingernails.
Navigating it is a fkn nightmare.
Giving up is not an option.
I will say that caring for a child that is the most vulnerable of our society has given me clarity on what is important and valuable about this life.
If you feel called read the details below and reach out to your state leaders and ask for their support in keeping Olmstead in place.
Our collective voices and votes have power.
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🚨 IMPORTANT NATIONAL DISABILITY RIGHTS UPDATE — PLEASE READ & SHARE 🚨
We want to make our members aware of an important development involving Olmstead and the right of people with disabilities to receive services in the community.
There is a lot of complicated legal language surrounding this case, so we are going to explain this as simply as possible.
First, please understand: Olmstead has NOT been overturned. The ADA has NOT been repealed. People with disabilities have NOT suddenly lost all of their community-integration rights.
But something important happened yesterday that we need to watch very closely.
WHAT IS THIS CASE ABOUT?
For years, the U.S. Department of Justice sued the State of Florida over medically complex children who were living in nursing facilities — or were at serious risk of being forced into nursing facilities — because they could not get enough Medicaid-funded care at home.
A federal district court found that Florida violated the Americans with Disabilities Act and the Olmstead integration mandate and ordered changes.
Florida appealed.
Earlier this year, the U.S. Court of Appeals for the Eleventh Circuit largely upheld that decision.
One part of that decision was especially important for people who depend upon Medicaid Home and Community-Based Services.
The court recognized that a person does not necessarily have to be placed into an institution before the ADA can protect them.
Being placed at a serious risk of institutionalization because needed community services are unavailable can itself support an ADA integration claim.
In very simple terms:
➡️ A state should not be able to cut or deny the services someone needs to remain safely at home and then say:
"Come back after you have actually been forced into an institution."
That principle is extremely important for people receiving HCBS.
WHAT HAPPENED YESTERDAY?
On August 13, 2026, the U.S. Department of Justice filed a motion asking the Eleventh Circuit to vacate its published opinion and send the case back to the lower court.
"Vacate" basically means asking the court to wipe out that appellate opinion as precedent.
And DOJ explains why.
DOJ has changed its position concerning its previous Olmstead guidance and says it will no longer rely upon that guidance when enforcing Title II of the ADA.
Even more importantly, DOJ states in the filing that:
“the United States no longer seeks or wishes to enforce liability in this case based on the at-risk theory.”
DOJ also tells the court that if the case is sent back, it intends to seek termination or modification of the portions of the injunction based upon the at-risk theory.
That means this is more than a technical change to a guidance document.
The federal government is telling the court that it no longer wants to enforce part of the judgment it previously fought to obtain.
DOES THIS MEAN OLMSTEAD IS GONE?
NO.
This distinction is extremely important.
The Supreme Court's Olmstead v. L.C. decision still exists.
Title II of the Americans with Disabilities Act still exists.
Section 504 still exists.
Other federal courts have recognized protections for people who face a serious risk of institutionalization.
And DOJ cannot simply erase federal statutes or Supreme Court precedent by changing its enforcement policy.
The Eleventh Circuit also has not yet granted DOJ's request.
DOJ has asked the court to vacate the opinion. The court still has to decide what happens next.
WHY DOES THIS MATTER OUTSIDE FLORIDA?
Because the legal principle involved is much bigger than one Florida case.
Imagine someone receiving HCBS who is living successfully in their own home.
Then their state reduces critical nursing hours, cuts needed supports, changes an assessment system, fails to provide authorized services, or otherwise removes the services keeping that person safely in the community.
Must that person actually enter a nursing facility or institution before they can challenge what the state has done?
Courts around the country have recognized that people can have legal protections when government policies place them at a serious risk of institutionalization.
That is the principle involved here.
THERE IS SOME IMPORTANT GOOD NEWS
DOJ changing its enforcement position does not automatically erase decades of court decisions.
Multiple federal appellate courts have recognized serious-risk-of-institutionalization claims.
For example, the Sixth Circuit — which covers Ohio, Michigan, Kentucky and Tennessee — has recognized this principle in Waskul v. Washtenaw County Community Mental Health.
So even if DOJ succeeds in having this particular Eleventh Circuit opinion vacated, that does not automatically eliminate these protections throughout the country.
But losing another strong appellate precedent — while the federal government simultaneously retreats from enforcement — is something the disability community should take very seriously.
WHAT HAPPENS NOW?
Right now, we are watching — not panicking.
Our National Disability & Home Care Rights Coalition is following the Eleventh Circuit docket and the disability-rights organizations and attorneys already involved in this litigation.
Several national disability and health organizations previously participated in this case supporting the rights of these children.
We are specifically watching to see:
➡️ Whether disability-rights attorneys oppose DOJ's request to vacate the opinion.
➡️ Whether organizations seek permission to file additional briefs with the court.
➡️ Whether affected children and families have another way to protect their interests now that DOJ has changed its position.
➡️ Whether a national coalition sign-on letter or organizational statement would be helpful.
➡️ Whether congressional outreach becomes necessary.
➡️ Whether families and disability organizations are asked to provide stories, declarations or other support.
➡️ Whether broader action is needed to protect the serious-risk-of-institutionalization principle nationally.
PLEASE DO NOT CONTACT THE COURT OR JUDGES.
Courts are not legislatures, and mass emails or calls to judges could be inappropriate and potentially counterproductive.
If action is needed, we want it to be organized, legally appropriate and directed where it can actually make a difference.
PLEASE BE PREPARED
This case moved very quickly yesterday, and additional filings could happen soon.
We are researching the case, monitoring developments, and identifying the attorneys and disability organizations already involved.
If they organize an appropriate response or if there is another meaningful way for the disability community to help, we will provide our members with clear instructions and an action kit.
For now:
📌 Read this information.
📌 Share it with other disability advocates, families, self-advocates and HCBS organizations.
📌 Do not panic when you see posts saying "Olmstead is gone." That is not what has happened.
📌 And please stay connected with this group because we may need to mobilize quickly.
The most important thing right now is that our community understands what is happening before we are asked to act.
People with disabilities should not have to lose the services keeping them safely in their communities — and actually enter an institution — before their rights matter.
We will continue following this closely and will update everyone as soon as we know what the next appropriate action should be.
— National Disability & Home Care Rights Coalition
