April 8, 2010
A mom recently wrote to me asking for help or ideas on enabling her thirty something year-old daughter to build an independent life in the community. I had little to offer her besides some links to information on what programs “might” be available “someday”. I encouraged her to acquaint herself with all of the programs, federal and state, that may offer assistance. But as far as a directive to “go here” “do this”...I had nothing. The only consolation I could offer her is that there are many, many families in the same situation. It’s frustrating and depressing to be able to do so little to help families that are so desperate to provide the care that their children need. In their heartfelt pleas for information and assistance, you can hear not only the love they have for their children but also the fear that the day will come, too soon, when they are no longer able to care for them.
What is the answer? Many groups are now suffering due to the economy and cutbacks. Individuals with developmental disabilities were suffering the effects of not enough services long before the economy tanked. It seems that this is a group who will never be adequately served unless some drastic changes are made. What those changes should be is something I don’t have an answer for. I have some ideas. I have many questions. Pondering those questions I was reminded of a line in that wonderful new series on the Discovery Channel – called Life. Have you seen it? - fabulous footage of life in the animal kingdom. While talking about species’ ability to adapt to a changing environment, the narrator says, “The only way to survive is to change.”
Have we been holding on to too many of the same old formulas, ideas, and habits relied upon to formulate services for individuals with developmental disabilities? Self-direction is surely a step onto the right path, but is it enough? Are we looking at it through eyes that are guided by the framework of services of the past, rather than with vision for new and better ways of meeting individual’s needs? All I know is that we are failing. We are failing vulnerable citizens who merely want to be respected as a part of their community. We are failing their families who have given so much and are trying to be proactive and responsible citizens as well as parents. How many generations will it take before we do it right?