VKC works to create advocacy education opportunities for community

LEND at DDH

The Vanderbilt Kennedy Center (VKC) creates multiple ways in which the greater Vanderbilt and Nashville community can gain skills in advocacy. From a LEND group project geared towards developing an “Advocacy Toolkit” to the VKC’s recent 2020 VKC Educate to Advocate public policy workshop and participation in Disability Day on the Hill, Vanderbilt students, staff, and faculty work to make advocacy skills both attainable and accessible.

Vanderbilt Consortium LEND Advocacy Toolkit

In the Vanderbilt Consortium LEND program’s 2019-2020 cohort, trainees Diana Janus, Seth Manning, Kelly Webb, and Kayla Rayne Withrow are bringing different professional experiences to the table in order to create an Advocacy Toolkit for Interprofessional Healthcare Teams under the guidance of Debbi Slawson, Ph.D., R.D., LDN (Public Health) and Donna Cherry, Ph.D. (Social Work). This interprofessional group has been developing a series of web and print-based resources designed to help people advocate for their loved ones with neurodevelopmental disorders. Manning, Webb, Withrow, and Janus are compiling resources that focus on several aspects of advocacy, ranging from how to effectively advocate while interacting with legislators to ways in which one can gather information on needed services.

“These trainees from East Tennessee State University have worked hard to consider the questions and concerns that caregivers face when first receiving a diagnosis of a developmental disability,” said LEND director Evon Lee, Ph.D. “The toolkit they are assembling should provide some helpful direction and useful resources for this challenging experience.”

The toolkit will help interprofessional healthcare teams by providing information about crucial topics such as family dynamics and normalizing the need to investigate a proper diagnosis. The group is currently compiling this material with the goal of providing help when and where it’s needed most and will plan to pilot their efforts through a peer review process soon.

2020 VKC Educate to Advocate

The Vanderbilt Kennedy Center hosted its 2020 Educate to Advocate public policy workshop in preparation for Feb. 4’sTennessee Disability Day on the Hill, during which disability organizations, family members and caregivers, self-advocates, and more schedule appointments with their elected officials to discuss disability issues and upcoming legislation.

VKC UCEDD director Elise McMillan, J.D., welcomed attendees from across the state either attending in person or via Zoom live streaming technology. Carol Westlake from the Tennessee Disability Coalition began the evening’s events by moderating a panel titled “Creating the Perfect Storm.” Who needs to be “at the table” when creating disability legislation? Tori Goddard and Rondi Kaufman, two mothers of children with complex medical needs, shared their stories of advocating for their children and working with lawmakers to pass legislation for the Katie Beckett Waiver in Tennessee. Joining them on the panel were Tom Jedlowski, a public relations official who helped get their stories to the media, Mason Moore, a staff member of the Tennessee General Assembly, and JP Homik, a representative from Vanderbilt University Medical Center’s Office of Community, Neighborhood, and Government Relations.

Next, Carrie Hobbs Guiden of The Arc Tennessee shared information on updates in State and Federal disability policy, sharing steps made within the last session and what is coming up soon. Finally, Brian Keller of Disability Rights Tennessee gave a presentation on voter accessibility and how you can serve as a poll site accessibility volunteer during the upcoming election season.

The entire 2020 Educate to Advocate session, as well as PowerPoint slides presented by Guiden and Keller, can be seen by visiting the VKC Public Policy webpage.

VKC faculty and staff, LEND trainees, and Next Steps at Vanderbilt students spent Feb. 4 on Tennessee’s Capitol Hill during Disability Day on the Hill meeting with elected representatives and staff to discuss recent or future disability legislation and how their votes would impact their constituents.

Attendees took in a panel discussion on the state of disability services in Tennessee, with opening remarks by Gov. Bill Lee. Tennessee Disability Pathfinder’s referral coordinator Linda Brown served on the panel both as a representative of Pathfinder and as a parent of a son with a disability. Following the panel, questions were taken by Tennessee legislators Sen. Becky Massey (R-Knoxville) and Rep. Sam Whitson (R-Franklin).

kindred stories cover2020 Tennessee Kindred Stories of Disability: Civic Engagement

Public policy and civic engagement were on the forefront of this year’s Kindred Stories of Disability publication. Interviews were given by self-advocates and parents of children with disabilities sharing how civic engagement, voter accessibility, and disability policy affect their lives and the lives of their families. Kindred Stories is led by Courtney Taylor, VKC director of Communications.

Several stories highlighted the recent efforts to pass Katie Beckett Waiver legislation, which is designed to assist families of children with disabilities and/or medically complex needs whose income would previously have barred access to critically needed government services such as Medicaid and Home and Community Based Services (HCBS) that private insurance doesn’t cover.

Kindred Stories was delivered to every Tennessee State and Federal elected official before Disability Day on the Hill thanks to VKC community partner The Arc Tennessee. Click here to read 2020 Tennessee Kindred Stories of Disability: Civic Engagement.

Elizabeth Turner is associate director of VKC Communications.
Gianna Petrelli is a long-term LEND Trainee in the field of Genetics.

A portion of this article appeared in AUCD’s monthly AUCD 360 e-newsletter.


Pictured top of page: Vanderbilt Consortium LEND at 2020 Disability Day on the Hill.  Left to right: Nicole Bardett, Tonya Bowman, Lauren Hanna, and Nina Coyle.

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This is a monthly email of Vanderbilt Kennedy Center Notables published by the Communications staff of the Vanderbilt Kennedy Center. Between issues of Notables, you can stay up to date on the latest Vanderbilt Kennedy Center news, information, and resources via the Vanderbilt Kennedy Center’s Facebook page.