Close To Home: A quiet crisis for disabled adults
By NANCY MIETZ
March 29, 2026
LINK TO PRESS DEMOCRAT ARTICLE
I am the parent of a 43-year-old son who is legally blind and has cerebral palsy, and I live every day with both gratitude and worry.
I am profoundly grateful for Becoming Independent, a nonprofit organization supporting the full spectrum of adults with intellectual and developmental disabilities. Because of its support, my son has been able to live independently for the past 15 years. He requires 24-hour assistance, yet through the guidance, advocacy and services provided by Becoming Independent, he has been able to live with dignity in his own home — not in an institution, not dependent solely on aging parents, but as a valued member of his community.
That dignity matters deeply to him. And it matters just as deeply to me and my husband as we approach our 80s. Like so many parents of adult children with intellectual and developmental disabilities, our greatest question is this: What will happen to our child when we are gone?
There is a quiet crisis facing families like ours. When children with disabilities turn 22, many school-based supports disappear. Suddenly, they are no longer part of the educational system that structured their services for years. They become adults in the eyes of the system, but their needs do not disappear with a birthday. In fact, navigating adult services can be increasingly complex and overwhelming.
Adults with disabilities need assistance not only with daily living, but also with navigating government systems, securing benefits, finding housing, maintaining employment and advocating for themselves in a world that often overlooks them. Agencies like Becoming Independent step into that gap.
They provide programs, advocacy and human connection for adults who would otherwise be left behind. Yet public funding is shrinking at the very moment when the need is growing. The current federal administration has expressed interest in significantly reducing funding for programs that are
lifelines for people with disabilities, including Medicaid, Medicare and Social Security. These cuts are not abstract policy debates to families like mine. They are existential threats. If my son’s funding was reduced or eliminated, I am at an age where I physically cannot step back into full-time caregiving. There are thousands of parents in the same position — aging caregivers who have spent decades advocating for and protecting their children and now are lying awake at night wondering what will happen if the safety net disappears.
Becoming Independent is not the only organization doing this work, but like many nonprofits serving the people with intellectual and developmental disabilities, it operates on limited resources. Government funding has become tighter year after year. And when funding shrinks, services shrink — or disappear altogether. Without these supports, many disabled adults would be at risk of homelessness, institutionalization or severe isolation. They cannot simply “figure it out” on their own. They are human beings with feelings, talents, dreams and vulnerabilities. Intellectual and developmental disabilities can affect any family. It is not about circumstance or choice; in many cases it is the luck of the draw. And when it touches your family, you quickly learn how essential these services are. This population is often easy for society to ignore. They do not always have the loudest voices. Many cannot advocate for themselves. But I cannot ignore them — because my son is one of them. He is not a budget line item. He is not a policy debate. He is a man with dignity, worth and a right to live safely in his community. As parents age, we need reassurance that our adult children will not be forgotten. Now, more than ever, we must protect and strengthen the services that make independent living possible — not dismantle them. Because behind every funding decision is a family like mine. And a son like mine.
