The Tennessee Developmental Disabilities Network has made national history with its just-completed joint needs assessment. What does that really mean for Tennessee’s disability community?
First, some background: The Developmental Disabilities (DD) Network exists in every state and is made up of three branches, all created under the same federal law.
- Councils on Developmental Disabilities are the policy change branch.
- University Centers of Excellence in Developmental Disabilities (UCEDDs) are the research, training, and clinical services branch – Vanderbilt Kennedy Center and University of Tennessee Center on Developmental Disabilities in our state.
- The Protection and Advocacy agency is the legal monitoring, investigation, and advocacy branch – Disability Rights Tennessee in our state.
The DD Network is the only source for this comprehensive support to the statewide developmental disability community.
What is a needs assessment – and why does it matter?
As part of our work, each of our DD Network agencies is required to do a needs assessment every five years. This helps us understand the issues that matter most to citizens, which helps us know what we need to work on to improve the lives of people in Tennessee’s developmental disability community.
“Every professional working in the disability system is aware of the vast needs across our community,” said Lauren Pearcy, executive director of the Tennessee Council on Developmental Disabilities. “However, a formal needs assessment is critical. It forces us to pause and ask Tennesseans to confirm for us: what are your needs? We rely on that data to make sure we stay on the right track.”
And as one focus group participant with multiple disabilities put it: “Actually listen to us. LISTEN TO US. We know ourselves and our needs best.”
Why a joint assessment?
In the past, each of our organizations did a separate public needs assessment survey on a different schedule. This past year, we took a different approach. Our DD Network worked together to do a single joint needs assessment. We were surprised to find out that no state’s DD Network had ever tried this before. We would be the first!
Vanderbilt Kennedy Center UCEDD co-director Julie Lounds Taylor says that working together on the survey required important conversations.
“Collaborating on the joint needs assessment provided us with an avenue to discuss where we each see our organizations moving over the next five years, and what information we each need to be sure our directions were guided by the needs of people with disabilities in Tennessee,” said Taylor. “By having detailed discussions about the activities our organizations are currently involved in and where we might want to go, we have been able to identify new areas where we can work together to leverage the power of our network.”
Vanderbilt Kennedy Center UCEDD researchers led the process, lending valuable expertise to the survey development, focus groups, and data analysis. Together, we were able to develop a more thorough and efficient process, both for the organizations and for the people taking the survey.
Who did we hear from?
The DD Network joint needs assessment was available in both English and Spanish. Participants could respond online, by phone, or on paper. We offered accommodations such as ASL interpretation and screen reader compatibility.
We received responses from a total of 1,496 Tennesseans – more than any of our organizations could have achieved alone.
- 322 were adults with disabilities.
- 693 were family members or loved ones of a person with a disability.
- 481 were professionals in the disability field.
Participants were from a wide range of ages, disability types, races/ethnicities, and geographic locations across the state. Following the survey, focus groups were held to dive deeper into the lived experiences behind the data.
What did we learn?
We asked respondents if their needs were met in a range of areas. The areas of greatest need that emerged were:
- Respite and childcare
- Future planning
- Transition from high school
The top barriers people listed to getting the help they needed were:
- It costs too much. (44%)
- I don’t know where to find help. (43%)
- Applying for help is hard or confusing. (43%)
The insights from the survey will guide the state’s DD Network’s strategic planning through 2030. Data will inform policy advocacy, program development, and funding decisions, ensuring that future efforts are grounded in the real experiences of Tennesseans with disabilities.
“The joint needs assessment is already informing our UCEDD’s clinical services by highlighting service gaps, especially in rural areas, and guiding telehealth expansion efforts for diagnostic evaluations,” said Bruce Keisling, executive director of the University of Tennessee Center on Developmental Disabilities in Memphis. “Insights from the survey and focus groups are helping the clinical team refine its approach to accessibility and individualized supports. By integrating findings from both community data and direct service experiences, the UCEDD can better respond to real-time needs.”
To view the full report, see below or visit: vkc.vumc.org/vkc/ucedd/communityneeds.
Jolene Sharp originally shared information from this article in Tennessee Disability Pathfinder’s Compass newsletter.
Photos by Adobe Stock
