Fighting Institutionalization in 2023

New Court Ruling Finds Florida Violates Rights of Children with Disabilities

Commentary by Jubilee Executive Director Steve Keener

“Like a prison.” I’ve known people who lived in institutions, and that’s how they described it. It’s been 51 years since Geraldo Rivera exposed the horrors of New York’s Willowbrook institution on national television, 33 years since the Americans with Disabilities Act was signed into law, and 24 years since the Supreme Court said in its landmark decision in Olmstead v. L.C. that segregation of people with disabilities in institutions is unlawful. 

Yet just this summer a federal Judge in Florida ruled that Florida continues to illegally institutionalize children with complex medical needs. Why is this still happening in 2023?

Florida’s rationalizations to the court echo decades past. The state argued that people with severe disabilities are “too fragile” to live outside of institutions, or their disabilities are so severe that they would derive no benefit from living in the community. The court disagreed and ruled that community-based services must be offered. The court’s ruling matches what we know from data and from daily experience here at Jubilee. People with disabilities do better in every way when living in their own homes and participating in their communities—and their communities benefit from their presence, too. 

Jubilee Association of Maryland was founded 45 years ago as an alternative to institutionalization. What we do daily at Jubilee is the bodily realization of human rights. It’s keys to your own apartment, support with making one’s own dinner, and gathering with friends. These things are not stopped by the need for wheelchair lifts. Life’s daily pleasures are not prevented by special diets, anxiety, communication challenges, or even occasional seizures. We walk and roll through life together with the support of skilled direct support staff and nurses—all committed to this vision for a community where everyone belongs and makes their own choices. 

At the same time, I challenge each of us to recognize that the fight against institutionalization does not end with the move to community-based services. Institutionalization also exists in mindsets that limit people’s choices just because of disability.

“You know you’re not living in an institution when you can get up at 2:00 a.m. and make yourself a burrito,” quips Melanie Moore, Jubilee’s Learning and Development Manager. It sounds silly, but it’s an accurate test of freedom and choice that comes from living as an independent adult. What will your independence allow you to do today? What will you do to protect others’ rights to their independent, joy-filled lives?