TN Developmental Disability Data

A pie chart and infographic showing three facts about developmental disabilities. First, 2.3% of the total population has at least one developmental disability. Second, that means there are 160,000 Tennesseans with developmental disabilities. Third, about 75% of adults with developmental disabilities get no formal support at all. At the bottom, a pink shape of the state of Tennessee shows that only 9% of Tennesseans with disabilities receive long-term services.
This chart shows that 2.3% of all people have a developmental disability. In Tennessee, that equals about 160,000 people. Across the whole country, about 75% of adults with developmental disabilities get no formal support at all, and in Tennessee, only 9% receive long-term services. See the section below for more details and sources.

What is a Developmental Disability?

A law called the Developmental Disabilities (DD) Act helps define what a developmental disability is. It says:

"A severe, chronic disability which originated at birth or during childhood, is expected to continue indefinitely, and substantially restricts the individual’s functioning in several major life activities."

This definition was a big deal because it focused on what kind of help a person needs and not just their diagnosis. It opened the door for more people to get support.

Some common developmental disabilities include:

  • Autism
  • Intellectual disabilities
  • Cerebral palsy
  • Spina bifida
  • Down syndrome

How Many Tennesseans Have a Developmental Disability?

About 2.3% of people have a developmental disability. In Tennessee, that's around 160,000 people. (p. 6, 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017) (acl.gov)).

(Note: Tennessee’s definition of "intellectual disability" and "developmental disability" can be found in state law in Tenn. Code Ann. § 33-1-101. Find directions for how to read those definitions, which are defined a bit differently than the DD Act definition, on this page on our website.)

Why Do These Numbers Matter?

They help us see who is getting help, and who is being left out.

  • In Tennessee, only about 15,000 people with developmental disabilities get long-term daily support for their needs.* That's only about 9% of the people who need it.
  • Across the whole country, nearly 75% of adults with intellectual or developmental disabilities get no formal support at all. (Institute on Community Integration, 2023)

This means most people with developmental disabilities rely on family members to help them because there aren't enough services to go around.

What Is the Council on Developmental Disabilities?

Councils on Developmental Disabilities exist to reach all people with information, resources, and support. We are the only group that works across the whole disability system, from childhood through adulthood.

A few ways we do that are by:

  • Helping people find services through a tool called TN Disability Pathfinder
  • Coaching families and systems to plan for the future using tools like the LifeCourse Framework
  • Testing new ideas through grants, pilot programs, and partnerships to fill in gaps and address barriers
  • Reaching people who have been left out and getting them the resources they need

The Council's goal is simple:

Every Tennessean with a developmental disability and their families should have the support they need to live a good life in their community.

Explore the website to learn more about the ways we're working to make that happen.

*A Note About the Numbers

Right now, about 15,000 people in Tennessee get long-term daily help through programs like:

ECF CHOICES - (~6,000 people) — home and community-based services for people with developmental disabilities

Katie Beckett program (~3,000 families) — supports children with complex needs

1915c waivers (~7,000 people) — Medicaid programs for people with intellectual disabilities (closed to new people in 2016)

There are also some shorter-term paid programs, like the Family Support program and Vocational Rehabilitation Services, that can help people along the way. ECF CHOICES is the main way that people with developmental disabilities in TN get long-term help for their daily needs.

A Study to Help Us Do Better

In 2021, we paid for a research project to answer two big questions:

  • What matters most to people with disabilities and the professionals who support them across Tennessee?
  • How do people find the information they need right now — and how could we make that easier?

What Did the Report Find?

The report takes a deep look at what all those people shared. It also gives real, practical ideas for solving long-standing problems — like how hard it can be to find information and services that help people with disabilities live full, thriving lives.

Who Led the Study?

Vanderbilt University and the Vanderbilt Kennedy Center ran the project. Over the course of one year, they heard from more than 3,000 people, including:

  • People with disabilities
  • Family members
  • Educators
  • Service providers
  • Agency staff
  • Healthcare workers