SILVER SPRING, Md., September 18, 2011 — Today’s guest column by Judith Ursitti is about the Combating Autism Reauthorization Act, which is essential legislation that affects the autism community. Read her words to learn not just why this legislation is important, but how you can help its passage.
Ursitti is the director of State Government Affairs at Autism Speaks and is the mother of two children, 8-year-old Jack and 11-year-old Amy. She lives just outside of Boston and has been involved in autism advocacy since Jack’s autism diagnosis 6 years ago. She writes a personal blog called Autismville.
Judith Ursitti and her son, Jack
“I’m not giving up on this kid, and you’re not either.”
Dr. B peered over the medical chart, looking me squarely in the eye. I, of course, was not ready to give up. Couldn’t ever imagine giving up.
But to hear her remind me that she wasn’t either? Well, when you’re the mom of a kid who’s been labeled non-verbal, non-responsive, extremely-challenged, severe—all words that pretty much equate to hopelessness—the commitment of someone, anyone other than you…it resonates.
My son Jack has been seeing Dr. B for four years now. Yes, he is incredibly challenged by autism but first and foremost, he’s a great kid. Dr. B realizes that and has done everything within her power to make sure that he reaches his full potential, that his medical needs are met, and that he feels good, even though it’s hard for him to tell us.
She runs one of the 17 Autism Treatment Network (ATN) sites where people like my Jack, who have been diagnosed with an autism spectrum disorder, go for highly coordinated medical care. It’s worth noting that ATNs are partially funded by the Health Resources and Services Administration (HRSA). Your help is needed in order to ensure that the 17 ATNs dotted across the country have the ability to keep supporting and believing in beautiful people like Jack.
Five years ago, the Combating Autism Act (CAA) was passed by Congress. Millions of dollars were authorized to fund autism research, diagnosis and treatment. The HRSA ATN funding I mentioned earlier is one shining example of how CAA funds have been invested.
Unfortunately, on September 30th, the provisions of the Combating Autism Act will sunset. Because of this, the Combating Autism Reauthorization Act (CARA) was filed earlier this year. CARA simply extends the work of the Combating Autism Act for three more years. As desperately as it is needed, advocates recognize the challenging times the country is facing, and are not asking for additional funding.
The good news is that CARA has bi-partisan support in both the U.S. Senate and House of Representatives. The bad news is that the clock is ticking. The September 30th deadline looms. The Congressional agenda is very full. We literally need an Act of Congress and we need it before the end of this month.
That said, slowly but surely, things are moving. Due in great part to a huge grassroots push last week, House Majority Leader Eric Cantor announced that the U.S. House of Representatives will vote on CARA this week. Things are less certain in the Senate, where the CARA legislation passed unanimously out of the Senate HELP committee a couple of weeks ago, but has yet to be taken up on the floor.
It is not an exaggeration to say that every day of the next two weeks will be critical. Congress is focused on many consuming issues and it is up to us to make sure that they don’t leave families and providers who walk in the word of autism a step behind.
In the spirit of Dr. B, I’m not giving up. I’m asking that you not give up either.
Please do what you can, in any way you can, to help ensure that CARA is signed into law by September 30th. It’s actually fairly easy to do. Just consider doing one or more of the following:
• Keep up with the movement of this critical legislation simply by registering for advocacy alerts at Autism Votes and ask friends and family to do the same.
Call your congressmembers and senators
• Find out where your U.S. Senator and Congress Member stands and contact them.
• Click through and share action alerts when you receive them. (Bonus if you’re wearing your bathrobe and slippers!)
• Program your congressman and senator’s phone numbers into your cell and dial when alerted.
• Know what you are advocating for. Read the text and history of the Combating Autism Reauthorization Act, available on Autism Votes’ CARA page.
The provisions of the Combating Autism Act will sunset in just a few days, but the realities of autism—the joys and challenges—they remain. For Jack, for Dr. B, for the millions of people across the country who need this work to continue, thank you for doing what you can.
Contact Judith Ursitti with any questions about CARA at judith.ursitti@autismspeaks.org.
Read more Autism Unexpected in the Communities at the Washington Times.
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