I occassionally blog for the Ruderman Family Foundation and this is my latest blog:
In a recent Boston Globe column, (January 29), Joan Vennochi brought us the story of James Nadworny, a young man with Down syndrome, who recently celebrated his 21st birthday. While it was undoubtedly a wonderful occasion, it would bring him and his devoted family closer to the day when he turns 22, a milestone, to paraphrase Don McLean, when “the music died.”
In Massachusetts and in most states, people with disabilities and their families have been “happy for a while.” People like James and my son, Jon, through the age of 22, are guaranteed an education but, unlike the majority of special education students, who will go on to college or careers, our children need additional supports to achieve the dreams and hopes we have for them.
“Bad news is on the doorsteps” because our children are entitled to nothing after their education ends. Continuation of support depends entirely on the state budget process. The support that individuals with significant disabilities need to be successful is not adequately funded and the funding gets tougher every year.
I know. I have been advocating on behalf of persons with disabilities for over 30 years. I know our State House too well and I get tired of begging for a society to see the worth of our children and adequately fund the services they need and to pay the dedicated staff who work with them a living wage.
My son was lucky. He is 32 and when he turned 22, the economy was stronger and the political will to provide him the supports he needed was stronger. As a result, he received the support he needed to work and live independently.
James is turning 22 in the worst possible economic time and the hopes of his family, for him to live a full, productive and meaningful life, should be the hope all of us has for James.