Dear readers,

It’s rare that we send special notices between our monthly newsletters. This is one of those times.

News has broken of a significant change in federal policy related to community living. You can read the details about the change and what it means below. But first, I want to share with you my personal reflections on why this issue hits very close to home for me and for so many in the disability community.

Most of you know that I have a daughter with Down syndrome. Lina is 13 and will be starting 8th grade in August. She is currently a little boy crazy. She looks for every opportunity to stay up late. She loves books and, with extra time, can read grade level novels. She struggles with math. She likes history because she idolizes her brother, and it’s his favorite subject. She will play as many games of Uno as you can tolerate. She is genuinely hilarious. She likes structure and routine. When she is upset or overwhelmed, she may communicate through rude and sometimes truly unsafe behavior. However, she can thrive with flexible and understanding support from people she trusts and feels connected to.

As you read the information in our statement below, you may think that a return to more institutional care wouldn’t apply to someone like Lina. But I want you to pause and imagine with me who Lina would be today if she had spent her life in an institution.

Not so long ago, children just like Lina lived a devastating nightmare in institutions that had been built with the very best of intentions. Community supports are why my children can live at home with me today. This issue could not feel more personal.

Any minute now, Lina will hop off the bus from summer school. She’ll play a little Animal Crossing on her Nintendo Switch, eat a dinner homecooked by dad, and play a few rounds of badminton with brother in the backyard. She’ll take too long in the shower, practice her violin with mom, and get tucked into bed and kissed good night by loving parents. It’s the life every child should have. I pray every child will.

Jolene Sharp
Chief Strategy Officer

 A New Opinion

The U.S. Department of Justice (DOJ) wrote a new opinion last week about key disability laws/legal rulings:

The new opinion says that states are not required to help people with disabilities live in the community. This is the opposite of how those laws have been understood for many years.

Why It Matters

For decades, disability services have focused on helping people live in the community. This was in large part because of the laws and court ruling mentioned above. The shared commitment to community living led to a movement known as “deinstitutionalization.” This movement was an important change from a history of abuse and isolation for people with disabilities in institutional settings. Community living has led to longer, better lives for people with developmental disabilities.  

What Happens Now

The new DOJ opinion does not change the laws. But it does change the way those laws are understood. Federal agencies that oversee disability services must follow the DOJ’s opinion. That may mean disability services are less focused on community integration. More people may have to go to an institution to get disability or mental health services.

Note: Institutional settings are things like nursing facilities, mental health institutions, and intermediate care facilities for people with intellectual and developmental disabilities. Learn more about institutional settings here.

What You Can Do

What We Are Doing

Our recent community living issue of Breaking Ground magazine tells the story of the move from institutions to community living in Tennessee. The State of Tennessee has closed all its large disability institutions. 

The Tennessee Council on Developmental Disabilities promotes community inclusion and belonging for Tennessee’s disability community. Councils across the country were created for this purpose more than 50 years ago by federal law. (Read more: How the “DD Act” transformed disability rights and community services)

That law says that Councils must “assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services… that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life.” (Read more: The Developmental Disabilities Assistance and Bill of Rights Act)

This work is not done. We hear regularly from people who aren’t getting the support they need. Our Council will continue to connect their voices to our service system. We will continue to partner with state leaders to improve Tennessee’s community-based services, so they meet real needs and work for everyone. The more people with developmental disabilities and their families can thrive in communities across Tennessee, the stronger our state will be. We invite you to keep working with us toward that goal.

- The Tennessee Council on Developmental Disabilities

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