A Boy and the Budget
This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.
President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.
Have you met my son Jack? He’s pretty awesome. Ok, I’m kind of biased, but he really is. He’s handsome and smart, with a goofy sense of humor. He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.
Sounds pretty typical on paper, doesn’t it? Jack has autism. And in that one word, anything typical goes right out the window… and fast.
His past, present and future are anything but typical. As his mother, I am plagued by questions about how my baby boy “got” autism. I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services. Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.
One out of every 110 people in America today is a “Jack.” The tsunami is coming.
In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers. I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory. Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials — I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.
I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece. I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families. The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.” Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”
I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).
Make no mistake, this is not a political endorsement. Autism is not defined by a political party. It is defined by the families who live it day in and day out. That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart. One out of every 110 people in this country are relying on them to help us take care of our precious children.
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