Three sisters and a UCEDD

3 sisters smiling

A trio of siblings are currently serving on the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities’ (VKC UCEDD) Community Advisory Council (CAC), and they are bringing a range of perspectives to the work being done at the Center. The CAC is an integral partner in advancing the VKC UCEDD’s mission. Mandated by the Developmental Disabilities Assistance and Bill of Rights Act*, CACs are set in place to “advise the system on policies and priorities to be carried out in protecting and advocating the rights of individuals with developmental disabilities.”

Members of the VKC UCEDD Community Advisory Council (CAC) include individuals with disabilities, family members, Tennessee Developmental Disabilities Network partners, and other community partners and stakeholders. Self-advocates and family members make up more than 50 percent of the CAC, and because they come from a variety of backgrounds and have an array of experiences with disabilities and disability-related issues, they bring invaluable and wide-ranging perspectives and knowledge.

Joanie Crowley has been an active member of the CAC since 2013. She joined after being nominated by Elise McMillan, J.D., co-director of the VKC UCEDD, and after being confirmed by the members of the CAC.

“I was already a Special Olympian and in Best Buddies, but I was ready to do more in the area of business,” said Crowley. “Elise told me about the CAC and how they needed people with disabilities to share their ideas and express their opinions. I thought it would be a good idea to join.”

McMillan had worked with Crowley on the advisory group for the development of the Intellectual and Developmental Disabilities Health Care Toolkit (IDD Toolkit), and was impressed with her participation and input.

“Joanie provided excellent advice for the IDD Toolkit,” said McMillan. “She was at every meeting and always asked some of the best questions. She could share with us what had worked and what hadn’t over her years of seeing health care providers. When it came time to film online trainings for the project, we asked her to be one of the individuals in the videos. Of course, she did an excellent job. I invited her to join the CAC and she has been a fantastic and active member.”

Crowley’s enthusiasm about the CAC led her to nominate two of her siblings. Colleen Dudley, executive director of Habitat for Humanity of Tennessee, joined in September of 2016.

“Joanie has always been an inspiration to me,” said Dudley. “I admire how she wants to get involved and connect with people. She has amazing gifts to share and is centered and spiritual and we continue to learn from each other. I joined the CAC because I knew it was important to Joanie and because I thought a sibling perspective would be useful. And I have learned so much. I really enjoy hearing about the research and about the work people are doing to educate legislators. My participation on the CAC encourages me to want to do more even more advocacy work with and for my sister.”

Kathy Irvin was confirmed as a member in September 2018. She is a retired Registered Nurse, who joined in part because she was discouraged by how her sister was treated during a stay in the hospital.

“Joanie’s stay in the hospital was a real eye-opener for me,” said Irvin. “I saw firsthand how people with disabilities can be treated disrespectfully. I saw incorrect perceptions of what people with disabilities are capable of. Colleen and I were with Joanie a lot, and the nurse would come in and wouldn’t speak to Joanie. She would talk to us. Some would come in and talk to Joanie loudly, like she couldn’t hear. I learned a lot about how much awareness work still needs to be done. Getting involved with the CAC connects me with others who also are doing work to educate the public about strengths and abilities of people with disabilities.”

“Having Colleen and Joanie both on the CAC has been tremendous because in some of our discussions, we have gotten two different perspectives on the same topic,” said McMillan. “Having Kathy now provides a unique perspective to have two siblings who have grown up with Joanie, and who also know the opportunities and challenges she faces living in the community. We rely on our CAC to advise us and to keep us in touch with community needs, and we are very grateful for the perspective these three sisters bring to our work.”

Are you interested in learning more or in joining the VKC UCEDD Community Advisory Council? Contact laurie.fleming@vumc.org.

Courtney Taylor is director of VKC Communications.

* Developmental Disabilities Assistance and Bill of Rights Act 2000: https://vkc.mc.vanderbilt.edu/assets/files/ucedd/dd_act_2000.pdf

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