Each quarter, staff and faculty of the Vanderbilt Kennedy University Center for Excellence in Developmental Disabilities (VKC UCEDD) meet with self-advocates, family members, Tennessee Developmental Disabilities Network partners, and other stakeholders to receive guidance and feedback that advances the VKC UCEDD’s mission.
Promoting independence, productivity, integration, and inclusion of individuals with developmental disabilities and families through quality services and supports cannot happen in a silo or without input. The VKC UCEDD Community Advisory Council (CAC) is an integral partner in crafting an innovative vision for delivering education, research, and services, and disseminating evidence-based practices and information.
“I choose to be a Community Advisory Council member because I respect the work that the Vanderbilt Kennedy Center UCEDD does for people with intellectual and developmental disabilities and their families,” said Carrie Guiden, executive director of The Arc Tennessee. “They are such effective leaders in the disability community, and they also show us that they truly value our input. We see ideas generated during our time together integrated into their strategic planning, and that affirms our participation. My favorite thing about being a CAC member is the opportunities we have to hear from VKC project and program speakers. I always learn something new every time we meet that I can take back and use in my own work.”
The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act) requires that all UCEDDs (there is at least one UCEDD in each state) have Community Advisory Councils to advise and guide their work. The DD Act says that the majority (over half) of CAC members must be individuals with developmental and related disabilities and family members, and that they must reflect the racial and ethnic diversity of the state.
“We think about our CAC as a bridge from Vanderbilt University Medical Center [VUMC] and our UCEDD to the community,” said VKC UCEDD co-director Elise McMillan, J.D. “CACs are effective because they bring together decision-makers and people with different ways of looking at issues to help us see our work from a variety of vantage points. We are required by the DD Act to have and involve our CAC in the planning and implementation of our projects, and honestly, I cannot imagine how we could do the work we do without them. The CAC has recommended programs like Kindred Stories of Disability, provided input into research projects, and we have even changed our areas of emphasis based on their feedback. We rely on our CAC to keep us in touch with community needs.”
CAC involvement can also be a leadership opportunity for members as disability advocates and mentors. Self-advocate Carolyn Meyer joined the CAC 2 years ago. She considers being a part of the VKC CAC a responsibility.
“I think it is important for me to be an advocate for people who do not always have a voice,” said Meyer. “Being on the VKC CAC is a way I can help people with disabilities and also help the Vanderbilt Kennedy Center at the same time. I can share things that maybe they didn’t think about before and then in the future, my ideas might help. We all have to work together as one team and that is important.”
The VKC UCEDD CAC meets quarterly, and highlights of the meetings include updates from the UCEDD co-directors, a guest speaker or two from VKC programs or research projects, and hands-on workgroups. Workgroups are a time when specific program needs or questions can be reviewed and analyzed more closely and in a small group setting.
However productive the VKC UCEDD CAC meetings are, they also are highly enjoyable and anticipated, and allow for being in community together.
“My favorite thing about the CAC meetings is the atmosphere,” said Meyer. “We work hard and we play hard. There is comradery at the meetings that I look forward to. Everyone comes together, and we all work together, and we catch up. It sometimes feels like a big reunion. It’s nice to catch up and to learn about what people are doing. It’s a really fun meeting.”
That’s worth repeating: A fun meeting.
“It’s also nice that we get to bring in new people on the CAC,” continued Meyer. “We have new people coming for the next meeting, and I want to welcome them and I hope they will enjoy the CAC as much as I do.”
New members include Bryshawn Jemison, a recent graduate of the inclusive higher education program Next Steps at Vanderbilt; Linnet Overton, executive director of the Statewide Independent Living Council of Tennessee; and Mary Ellen Chase, a parent advocate.
At the June meeting, the CAC bid farewell to its chair, John Shouse, who has led the group from the perspective of a parent advocate for the past 2 years, and to CAC co-chair, John Chase, an active member and self-advocate from the Memphis area. Also stepping down was Luz Belleza-Binns who has served on the CAC since 2011.
Current CAC member and sibling Tina Prochaska, a faculty member at the Tennessee School for the Deaf, will assume the role of CAC chair at the September meeting. Robyn Lampley, parent advocate and services coordinator for The Arc Developmental Services of Dixon County, will serve as co-chair.
To echo CAC member Carloyn Meyer’s sentiments, we welcome our new members and hope they find the VKC CAC meetings as exciting, effective, and fun as we do.
Are you interested in learning more or in joining the VKC UCEDD Community Advisory Council? Contact firstname.lastname@example.org.
Courtney Taylor is VKC associate director of Communications and Dissemination.
Pictured top of page: Carolyn Meyer, CAC member, and Elise McMillan, VKC UCEDD co-director