We’re Seeking Your Advice; Can You Help Our Team?
By Janet Shouse
When you first receive a diagnosis of a disability, either for yourself or a loved one, where do you turn for information and resources? Or if you’re a teacher or some other type of professional, when an individual or family approaches you for more disability resources, where do you turn?
Back in 2004 or so, I was asked to be a part of a group called the Vanderbilt Kennedy Center Community Advisory Council. In those days, I worked evenings, so my days were free to volunteer and do disability advocacy work. One of the things I remember learning about at one of the first Community Advisory Council meetings was something called Tennessee Disability Pathfinder.
Pathfinder, a central source for disability information in Tennessee, had been created in 1997 by the Tennessee Council on Developmental Disabilities and operated by the Vanderbilt Kennedy Center in response to demand from families all across the state who needed a way to get information about disability services. In those days, Pathfinder had three giant books, one for East Tennessee, one for Middle and one for West, with page after page of agencies that provided services helpful to individuals with disabilities and their families.
I’d been involved in the disability community since 1998, when my son Evan was diagnosed with autism, and I’d never heard of Tennessee Disability Pathfinder. I was blown away.
Those three giant books are gone, but I’m writing today to say your voice is needed because we know finding information about disability supports and services can still be challenging in Tennessee.
I understand from personal experience and from talking with families that disability-related information and resources are still sometimes hard to find. Some of my colleagues at the Vanderbilt Kennedy Center want to learn from you—individuals with disabilities, family members, teachers and other professionals—about how to improve sharing such information in Tennessee.
Are there questions you struggle to find answers to?
Do you have a go-to source for information?
Whether you’re an individual with a disability, a family member, a teacher or a service provider, my colleagues want to hear from you. And they want honest answers!
If you would, please complete the survey here: www.tndisabilitysurvey.org
The survey should take about 15 minutes to finish.
Everyone completing the survey can request free resources and be entered into a drawing for one of 100 gift cards ($20 each). The team hopes to hear from more than 3,000 Tennesseans with disabilities, their families, and the professionals or providers who serve them.
This study is a collaboration between the Vanderbilt Kennedy Center’s University Center for Excellence in Developmental Disabilities, Tennessee Disability Pathfinder, and the Tennessee Council on Developmental Disabilities.
I often refer to Pathfinder as a “hidden jewel.” Even today, I encounter families and community members who aren’t aware of Pathfinder or know where to turn for more help with disability resources generally. And I’m not aware of another state that has a Pathfinder equivalent.
Much has changed since I first discovered Pathfinder all those years ago. Instead of those three books, Pathfinder’s information can now be found online, through a searchable database, or through an email request or making a phone call. You can talk with personable and caring folks who are parents of children with disabilities or individuals with disabilities themselves, and you can explain what you need. There is a part of Pathfinder dedicated to Spanish-speaking families and individuals with a phone line to speak with live people, called Camino Seguro, and there’s a multicultural team, whose members assist with other language speakers. These folks are equipped to help members of various cultural, refugee and immigrant communities find needed disability services and supports. These programs also provide training to organizations serving multicultural communities on how to better address disability-related needs.
These days Pathfinder is funded by contracts with the Tennessee Departments of Health, Intellectual and Developmental Disabilities, Education and Human Services/Rehabilitation Services, and the DD Council, with the DD Council still the primary funder.
If you aren’t familiar with Pathfinder, you will see that you can find all sorts of good stuff, including information about employment resources at https://vkc.vumc.org/vkc/pathfinder.
Thanks for taking time to take the survey to help my colleagues understand how to better get disability information out to individuals, families, providers and the community. As always, if you have questions or concerns, you can email me at email@example.com. I’m happy to connect!
Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.
December 15, 2020