A Message from a Community Partner, Vanderbilt Kennedy Center

Posted on by Janet Shouse
Graphic for The Compass newsletter themed “Real-Life Resources for Aging Well.” The design features patriotic red, white, and blue ribbon streamers curving across the top and bottom of the image, decorated with white stars and scattered red and blue confetti. Large centered text reads “THE COMPASS” in bold serif lettering, with “THE” in blue and “COMPASS” in red. Beneath it, black italic text reads “Real-Life Resources for Aging Well.” On the right side, an older couple is shown from behind embracing while looking out over a sunlit mountain landscape at sunset. The woman has short gray hair and wears a cream-colored sweater, while the man has white hair and wears a dark sweater with his arm wrapped around her shoulders. The Tennessee Disability Pathfinder compass logo appears near the top right above the couple. The overall tone is warm, reflective, and celebratory, combining themes of aging, connection, and support.

Dear Community,

May is Older Americans Month, and while I don’t feel particularly old most days, the fact that my “babies” — my twins — are 30 means I now qualify as “older.” And that’s especially true since I was not exactly a “spring chicken” when I had my boys.

One of my twins has a significant disability, and that brings additional concerns that many older Americans don’t have to consider. As parents, we spend so much of our lives protecting, supporting, and planning for our children that it can be difficult to imagine a future where we may not always be able to do those things in the same way. I often hear many parents say their son or daughter with a disability will live with them forever. And I understand that feeling deeply. But as the parent of a young man who made it very clear that he was no longer happy living in our home, I try to encourage parents, if they can, and if their child is willing, to consider other living arrangements before health changes or death make those transitions more difficult.

Waiting until a family is overwhelmed or facing an emergency can make the transition process much harder for everyone involved. It may mean an individual is suddenly adjusting to a new living arrangement, new routines, and multiple support people all at once.

Whenever possible, I believe those transitions should happen with the guidance, reassurance, and involvement of the people who know and love that individual most. Planning ahead is not always easy, but it is important. It requires gathering clear and accurate information, enrolling in programs such as Medicaid waiver programs, speaking with multiple agencies to find the right fit, advocating with a support coordinator for the right supports, and preparing for chProfile graphic featuring Janet Shouse, identified as the IDD Toolkit Program Coordinator and Communications Specialist at Vanderbilt Kennedy Center. The design has a clean white and light gray geometric background with dark red and navy curved accents along the right edge. On the right side is a circular portrait photo of Janet outdoors in natural light. She is a white woman with short gray hair and dark-framed glasses, wearing a turquoise top and a black beaded necklace. She smiles softly at the camera while standing in front of a grassy area with a white fence blurred in the background. On the left side of the graphic, large text reads “JANET SHOUSE,” with smaller text below listing her title and affiliation with Vanderbilt Kennedy Center.anges that can feel overwhelming to think about. But making these arrangements can also bring something many families need: peace of mind, especially for aging parents caring for adult children with disabilities.

I hope families will consider starting those conversations early, exploring options together, and allowing themselves and their loved ones to navigate these transitions with support, dignity, and care.

Janet Shouse
Program Coordinator for the IDD Toolkit Project
Vanderbilt Kennedy Center
www.iddtoolkit.org