Breaking Ground 108 - Big Solutions for Real Needs

by Elise McMillan, Co-Director, Vanderbilt Kennedy Center for Excellence in Developmental Disabilities

So much is changing for people with disabilities in Tennessee. In many cases, that positive change can be traced back to the leadership of Wanda Willis and the Tennessee Council on Developmental Disabilities.

The area of need may change, but the key ingredients of Wanda’s leadership of the Council are the same:

  • Hear from individuals and families about a persistent need in Tennessee.
  • Bring partners together.
  • Work with partners toward a common goal that addresses the need.
  • Stay involved to support, advocate, collaborate, and succeed.

At the Vanderbilt Kennedy Center, we have had the wonderful opportunity to work with the Council and the Tennessee Developmental Disabilities Network on many projects. Two that stand out and show the unique role of the Council are:

  • Founding and growing inclusive higher education in Tennessee, and
  • The continuing growth and impact of Tennessee Disability Pathfinder.

College for all

Before 2010, there were no inclusive higher education programs for students with intellectual and developmental disabilities in Tennessee. Wanda began meeting with a small group of leaders to address this challenge. The group brought people and organizations together and visited other states to learn more. We offered conferences to help the community learn about this educational opportunity that was growing in other parts of the country but not yet catching on in most of the Southeast.

The Council worked with the Vanderbilt Kennedy Center and another partner to fund the first program at Vanderbilt University. Wanda and the Council have stayed very involved in the Tennessee Alliance for Inclusive Higher Education (, with the goal of adding more inclusive college programs across the state. The Council has been involved in each of the six college programs now serving students across Tennessee. The Council has stayed connected with the Tennessee Department of Intellectual and Developmental Disabilities (DIDD) and the Tennessee Higher Education Commission on a new project named “Tennessee Believes” that will fund more opportunities for these programs across the state.

Making it easier to find resources

In 1997, Wanda and the Council partnered with the Vanderbilt Kennedy Center to launch Tennessee Disability Pathfinder (, the state’s center for finding disability information and services. Since then, Pathfinder has helped thousands of people with disabilities, their families, educators, and other professionals find and access resources, support, and services.

In the beginning, the project included two staff members, a toll-free call number, and printed directories of information and services. With Council support, Pathfinder grew its staff, launched a website, and added a multicultural program to serve families from diverse backgrounds.

But Wanda and the Council continued to hear from people with disabilities and families about the struggles of finding good information about the disability services system. More was needed. Wanda worked for several years to bring in six other state agencies to invest in Pathfinder:

  • Department of Education
  • Department of, Intellectual and Developmental Disabilities
  • Department of Mental and Substance Abuse Services
  • Department of Health
  • Department of Human Services/Division of Rehabilitation Services
  • Tennessee Commission on Aging and Disabilities

These agencies have worked together with Pathfinder Director Megan Hart to expand the Pathfinder staff and launch a new website. The updated site offers new features that make it easier to find resources based on the specific need.

Wanda saw an opportunity to learn even more about what Tennessee’s disability community needed. In Fall 2020, the Council partnered with Vanderbilt University, Dr. Erik Carter, and the Pathfinder team to launch a one-year study to learn what matters most to the disability community and professionals in the disability field.

Over the last year, the research team surveyed more than 3,000 Tennesseans with disabilities, family members, educators, providers, agency staff, and healthcare workers to answer questions like:

  • What are your most pressing needs and questions?
  • Where are Tennesseans looking now for information and resources?
  • What are your best recommendations for improving Pathfinder’s reach and impact?
  • How do these answers vary based on who is asked, what they do, and where in the state they live?

All this information is being used to inform the ongoing work of Tennessee Disability Pathfinder. It is also useful for the many state agencies, disability organizations, and schools in Tennessee who work to connect people with disabilities and their families to needed information and resources.

This report provides an in-depth look at the insights shared by so many different people from across Tennessee. It offers practical recommendations for addressing lasting needs related to information and services that enable people with disabilities to flourish. It can also be used by state agencies and organizations as they reflect on their own service delivery and information efforts.

Wanda’s commitment to improve the lives of people with disabilities, their families, and the greater community has remained firm throughout her time as Council Executive Director.

I am personally grateful to have worked so closely with her, and to have learned from her over so many years of partnership. I know that her impact will continue through the ongoing work of the Council.

Elise McMillan, JD, is Co-Director of the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities, Senior Associate in the VUMC Department of Psychiatry and Behavioral Sciences, and VKC Director of Public Policy and Community Engagement. She holds leadership positions with TennesseeWorks, Tennessee Disability Pathfinder, Next Steps at Vanderbilt, and the Tennessee Alliance for Inclusive Higher Education. She and her husband are parents of three young adults, including a son with Down Syndrome, and grandparents of five.

Snapshot of Disability Experiences

More than 3,000 Tennesseans connected to disability answered questions about what is important to them and how they get information about services. The study provides a large amount of data. We will share just a few highlights.

What experiences are most important for people with disabilities?

  • Experiences rated important by the most people with disabilities:
    • Having good mental health (95%)
    • Making their own decisions (94%)
    • Pursing personal growth (92%)
    • Being physically healthy (92%)
  • Experiences rated as important by the most parents of younger children with disabilities:
    • Learning social and communication skills (95%)
    • Having good mental health (95%)
    • Learning daily living skills (94%)
  • Experiences rated as important by the most parents of youth and adults with disabilities:
    • Having good mental health (95%)
    • Being physically healthy (95%)
    • Making friends (90%)

Do people know who can help?

  • The most people with disabilities were unsure who could help them with:
    • Dating (37%)
    • Finding or keeping a job (33%)
    • Advocating for others (33%)
  • The most parents of younger children with disabilities were unsure who could help their children with:
    • Attending summer camps/programs (47%)
    • Having friends (45%)
    • Participating in recreational activities (44%)
  • The most parents of youth and adults were unsure who could help them with:
    • Having their own place to live (58%)
    • Dating (49%)
    • Finding or keeping a job (44%)

How easy is it to find disability-related information and services?

  • People with disabilities responses:
    • 13% said very easy and 34% said somewhat easy
    • 39% said somewhat hard and 14% said very hard
  • Parent responses:
    • 4% said very easy and 22% said somewhat easy
    • 51% said somewhat hard and 24% said very hard
  • Sibling responses:
    • 11% said very easy and 21% said somewhat easy
    • 53% said somewhat hard and 15% said very hard
  • Other loved ones’ responses:
    • 10% said very easy and 22% said somewhat easy
    • 46% said somewhat hard and 22% said very hard

What is your biggest disability-related question or need right now?

  • People with disabilities:
  1. Employment
  2. Financial help
  3. Medical care
  • Families (parents, siblings, other family members):
  1. Financial help
  2. Finding services
  3. Respite or homecare (help caring for a loved one so caregivers can get a break)
  • Professionals (people working in disability-related fields, like special education, adult services, etc.):
  1. Finding services
  2. Financial help
  3. Transportation

The study includes much more data that Pathfinder, the Council, and other agencies will be using to help us meet the needs of our statewide disability community.