Although 25 years old, my daughter still requires 24/7 care and supervision. She lives at home, and while she attends a program 5 hours a day, her father and I provide the majority of that care. Katie’s future is one we worry about a lot—and more and more the older we get.
Of course worrying about our children, whether or not they have a disability, is something every parent I know engages in from time to time. The world’s an uncertain place; life is uncertain. There are no guarantees for anyone. But worrying about a child who cannot take care of themselves, who will always be dependent on the good will and skills of others, is a completely different kind of worry. Indeed, there are moments, usually around 2 a.m. when I’m tossing and turning, that it can rise to the level of sheer terror.
I am not alone in these fears. Many other parents I know also ask themselves the wrenching question: What will happen to my child when I am no longer able to take care of him? When I’m not here to make sure she’s alright?
I’ve written before about the absolute critical importance of having well-trained and fairly paid direct support workers (often referred to as DSPs) who really know Katie, who look out for her safety and well-being, and help her build a good life—not a perfect life, nothing extravagant, but a life that has loving connections with others, meaningful ways to spend her days, moments of joy. Such DSPs are important to Katie now, but they will matter even more in the future, and the harsh reality is that their presence in her life will depend on there being adequate funding to pay them a living wage for the hard work they do. And if there isn’t that funding? The risk to my daughter of neglect, abuse, and a life that is lonely, sad, and without purpose rises exponentially. That is the fear that makes it hardest to sleep at night.
Lately I’ve read a number of articles about debates going on at the national and state levels regarding funding for various government programs, including Medicaid, that people like Katie rely upon. I wonder how many of the people engaged in those debates can really picture what life for her would look like without the supports she needs to get through each and every day. I wonder what it would say about our society, about our values and priorities, if we abdicated our responsibility to care for the most vulnerable among us.
And yet… I also know that there are good and caring people who have always been a part of Katie’s life. In fact, having a child with disabilities has over and over again brought us in touch with the very best of human nature—from that direct support worker who has become a lifelong friend, to the stranger in the grocery store who may be momentarily startled but then welcomes Katie’s handshake or hug, telling us how she has made their day. For that reason, I believe one way to proactively address my worries about the future is to help Katie, and ask others to help her, have an active role in the community now. My hope is that the more people get to know and love her today, the more they will look out for her later—including fighting for the supports and services she will always need.
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