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To The Editor:
“His potential is being wasted.” As a parent of a daughter with a developmental disability, I have heard comments like these. These families also have children with developmental disabilities, and they have been waiting – sometimes for many years – for the supports that will make it easier for their children to develop their gifts, to live and learn in their communities, and to get the supports necessary so their parents can better take care of them home. I have also lived these comments. My child has significant disabilities and requires attention from sunrise to sundown. My husband and I need a break at times from these demands, but for a number of years, we had to wait for respite care. When those services finally were available, they were a godsend to us and our family. Today, though, we still wait to get enough help to come into our house and help keep track of our son, whose tendency to wander and whose challenging behaviors require constant supervision and monitoring. When we applied to our local county human service agency four years ago for this support, we were put on a waiting list -- and there we have stayed. Our family is not an isolated case. Five thousand Minnesotans are looking for the supports that will help them or their loved one with disabilities learn, live, work, and participate in their communities. Of those, 500 are 23 years or older and living with their immediate family or extended family. These families are often fearful about what will happen to their son or daughter when they aren’t able to care for them any longer. Sixty-one percent of those waiting are under age 18. Fifty-four percent are waiting for the respite care that makes such a huge difference for us. A number of Minnesotans like us are finding our voice and telling our elected officials, “We Are Waiting!” They are not only waiting for services to begin. They are also waiting for a day when the system provides them more control over the resources they receive for their child with disabilities so they can spend them in ways that best meet their needs. And they know that Minnesotans are behind them. In a survey completed just last year by the Minnesota Governor’s Council on Developmental Disabilities, a non-partisan state agency, 89% of Minnesotans believe that society should help parents meet the special challenges they face when raising children with disabilities. Overwhelming majorities – again, 87 percent or more – believe that families should receive financial assistance when raising their children, that people with disabilities should be taught job skills and receive on-the-job support when working in the community, and that people with disabilities should have paid staff who can help them live more independently. I know we are facing a tough budget year, and I know our economic situation is shaky. As a taxpayer, I want our state dollars used as efficiently as possible. Those who are crying, “We Are Waiting!” with are also calling for reforms in our current system so that those dollars are indeed resulting in stronger families, more independent citizens, and improved lives. While we live in an era of intense partisanship, disability affects people no mater what your political persuasion. Let’s keep people with disabilities and their families from waiting any longer, from being “listed and forgotten,” and from facing obstacles that stand in their way.
Sincerely, |
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