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 deathmake 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 changes 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.