I am EXHAUSTED…..WHY you may ask? Again people with disabilities have to gear up for battle.

We just saved Community First Choice so we can continue to have services in the community instead of the nursing home. Now the Olmstead decision of 1999 is in danger. On June 22, 1999, the U.S. Supreme Court ruled that states are required to provide community-based services when appropriate rather than institutional care. It was a landmark ruling celebrated by people with all disabilities because it compelled states to funnel Medicaid funds from institutions to community programs.

Then almost exactly 27 years later, on June 18, 2026, Deputy Assistant Attorney General Lanora Pettit released an opinion that attempts to undermine the Olmstead Promise. This opinion could potentially lead to a domino effect causing states to no longer fund community programs. President Trump has been clear that he thinks states should limit the use of Medicaid funds to institutions and not community programs.

This is absolutely terrifying to me. I was born with a physical disability Arthrogryposis. Unfortunately in my later years I also developed spinal stenosis and diabetes. I lived in New Haven for over 30 years with daily assistance from personal care assistants.

In March 2024 my family and I made the difficult decision for me to enter a nursing home due to some financial issues and all the physical problems I was having.

My goal was to return to the community as soon as possible. It took over two years to be able to return to my home city of New Haven. While the staff at the nursing home was good, it also had many challenges. Their were numerous staff shortages and call outs. Patients would wait sometimes over an hour to be cleaned from bathroom accidents. The CNAs typically had 10 to 15 residents to care for which is allowed by the state but many of the patients were total care either physically or mentally due to dementia.

My roommate, who I grew to love, also grew worse mentally. Honestly there were many times if I had not been there to watch her I don’t know what would have happened to her. I would hear residents hollering on a daily basis. It was difficult to deal with. When the weather allowed I would sit outside and listen to music or go on walks with my sister to escape. The home was sold to another company and services worsened, like food, and there were cuts across the board.

My day of freedom was June 3. My new apartment is small but with the assistance of my personal care assistants I am getting settled in and it is feeling like home. I’m getting to know my neighborhood and looking forward to using transit to get around.

People think placing their relatives in a nursing home will keep them safe because they will have 24-hour care. Trust me I was there. It’s a lie. They are not going to be safer. The other day the home I was in posted to Facebook they are at 100 percent capacity. The administrators posed happily with balloons in celebration. I did not see any CNAs in the picture. I’m sure they were too busy. The post made me sad because I know what’s happening on the unit. Patients are not getting the care they need and CNAs being overwhelmed.

If Olmstead gets set aside, God help us.

Remember any of us can become disabled due to accident, illness or age. If we lose Olmstead we all could end up in an institution. I encourage you to watch a documentary about Willowbrook. It’s an institution in New York that Geraldo Rivera investigated. What you will see is absolutely horrific. Do we really want to reverse history and go back to this?

Sandra Roberts lives in New Haven.