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 posted the bill for an expedited vote before the U.S. House of Representatives where it pased yesterday by voice vote. Things are less certain in the Senate, where the CARA legislation passed unanimously out of the Senate HELP committee in early September, but has yet to be taken up on the floor.
It is not an exaggeration to say that every day until Septermber 30 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.
Join our final push for Combating Autism Reauthorization Act through United States Senate, by clicking here!