Christine Bakter is currently the Statewide Chapter Advocacy Chair for Autism Speaks in New Jersey, effectively advocating for autism research and services at the federal level, as well as leading the grassroots effort that resulted in New Jersey becoming the 15th state to enact autism insurance reform in 2009. She previously served as the Chairperson for the Central New Jersey Walk Now for Autism Speaks and has been an active member of the Central New Jersey community development committee since 2002. Christine has two sons with autism spectrum disorders.
Since its inception, I have enthusiastically participated in the Autism Speaks advocacy initiative, Autism Votes. My work began with a number of New Jersey federal legislators to garner support for the Combating Autism Act, initially introduced in the Senate in 2005 by former Senator Chris Dodd (CT) and former Senator Rick Santorum (PA).
Armed with talking points for the Combating Autism Act (CAA), New Jersey Autism Speaks advocates entered the offices of newly appointed Senator Robert Menendez in the spring of 2006, unsure of what to expect. The only constant in politics is change – and our delegation was dealing with an unknown. Senator Menendez, the former Congressman of New Jersey’s 13th District, had been appointed in late 2005 to serve out the remainder of outgoing Senator turned Governor-elect Jon Corzine’s term, which was due to expire at the end of the year. We were successful in securing the support for the CAA from both New Jersey Senators and several Congressmen in 2005 right after its introduction, but none of us attending the meeting that day hailed from the 13th district. As such, we weren’t entirely sure where the new Senator stood on autism or how strong his support would be.
We did not need to worry for very long. His agreement to cosponsor the CAA was immediately given along with a promise to do more when the timing proved better.
Senator Menendez issued this statement to our group via staff.
“Senator Menendez understands that autism is a pressing health concern for New Jersey families. As a new appointee, he is “Senator Number 100″ right now there are limits to what he can do until he wins this Senate seat of his own accord in November’s election. But I want to assure you that he intends to make this a signature issue. He understands how important this is to families like yours across our state.”
Thinking back to this statement, made by the healthcare legislative aide who remains on his staff to this day as one of my primary points of contact, makes me smile. I admit that I’m somewhat of a skeptic, so when someone in the political arena keeps a promise, I’m impressed, exited, and encouraged. This could have been some run-of-the-mill campaign promise, and it became obvious rather quickly that it was far from that when I was invited back to participate in a series of roundtable discussions hosted by Senator Menendez in 2008. The purpose of that meeting was to get a better sense of what current federal legislation was missing – to essentially fill in the gaps in the federal response to the autism epidemic, which has hit New Jersey especially hard. The Helping HANDS for Autism Act of 2008 was the legislation resulting from those roundtable discussions. The next year in the summer of 2009, Senator Menendez played a critical role in ensuring that coverage for behavior-based autism therapies was included in the essential benefits package of the hotly contested healthcare reform bill.
So it’s no surprise to me that the leadership baton for the Combating Autism Reauthorization Act (CARA) has been passed to Senator Menendez to reauthorize this historic legislation and allow the foundation for autism research to continue to grow.
Additionally, my Congressman, Chris Smith, introduced the companion CARA bill in the House of Representatives in conjunction with the Senate version introduced by Senator Menendez. Congressman Smith (R-NJ) continues to be stalwart advocate for the autism community in the House of Representatives, first advocating for individuals with autism as a freshman Congressman in 1982. Along with Congressman Mike Doyle (D-PA), Rep. Smith formed the Coalition for Autism Research and Education in 2001, in direct response to a suspected autism cluster in Brick Township that was brought to his attention by Bobbie and Bill Gallagher, constituents with two affected children. When my husband and I first walked into Congressman Smith’s Washington office in 2004, we understood immediately that we were in a unique position – this was a legislator who didn’t need to be educated or swayed with respect to our legislative agenda; he was the primary sponsor of many of the bills on our action lists. Rep. Smith was already acting in response to the concerns of our community and we were in the enviable position of having a meeting to just convey gratitude for his steadfast support. Congressman Smith’s staff impressed me with their detailed knowledge of autism as they asked thoughtful, intelligent questions about our two affected sons and their educational and therapeutic needs. Upon learning that our younger son, Ben, had experienced amazing gains due in large part to his participation in the Autism Speaks-funded “High Risk Infant Siblings Study” at Kennedy Krieger in Baltimore, he immediately asked for more information, bandying about an idea for a piece of legislation to further fund this important early detection research. Ultimately, the goals Congressman Smith wanted to address with his idea for a bill were sufficiently covered in the original Combating Autism Act, which he cosponsored with Congressman Doyle in 2006. Congressman Smith’s long-term commitment to the autism community, spurned directly from the concerns his constituents bring to him, has translated into legislation that has impacted the rest of the nation in a meaningful way. I remain grateful to have a Congressman that not only listens to my concerns, but continually seeks new ways to act on them legislatively.
Thank you, Senator Menendez and Congressman Smith, for your continued service to our loved with autism not only here in New Jersey but across the nation by introducing S. 1094/H.R. 2005 – The Combating Autism Reauthorization Act – in both Houses of Congress. We look forward to a continued partnership to advance not only our understanding of autism through research, but to also provide the desperately needed services that will allow our children to live out the full course of their lives with dignity and purpose.
This legislation must be passed by Congress and signed by President Obama by September 30th, 2011. If you would like to get involved to make sure that happens, please visit www.autismvotes.org/action-cara. Autism Votes makes it easy to participate. Autism Speaks – It’s time for Congress to listen.
This guest post is by Andy Shih, Ph.D., the Vice President of Scientific Affairs at Autism Speaks.
When Peter Bell, our EVP of programs and services, first told me about the possibility of testifying at a hearing Congressman Chris Smith (R-NJ) was holding on a global perspective on autism, I did a double take. It was not surprising that Congressman Smith, a long time friend of the community who with Congressman Mike Doyle (D-PA) had just introduced the Combating Autism Reauthorization Act of 2011 in the House last week, is interested in autism. But the fact that he wanted to learn more about the international autism community, especially in Sub-Saharan Africa, had me wondering what could have led the congressman from Brick Township, N.J., to the Townships of South Africa.
It turned out that like many others in our community, Congressman Smith and his colleagues on the House Foreign Committee’s Subcommittee on Africa, Global Health, and Human Rights, understand that autism does not discriminate based on ethnicity or socioeconomic status, and that the only way to speed answers to all individuals and families struggling with this disorder around the world, including those in the U.S., is through international collaboration.
“The benefits of international collaborations and cooperation are multidirectional,” said Congressman Smith in his opening statement at the hearing yesterday afternoon.
In addition to Stuart Spielman and Kevin Roy from our crack government relations team, I was joined at the hearing by Dr. Tom McCool, CEO of Eden Autism Services in New Jersey, Ms. Brigitte Kobenan, founder of Autism Community of Africa, and via teleconference, Ms. Arlene Cassidy, CEO of Autism Northern Ireland. We spent a few hours with members of the subcommittee discussing barriers to progress, such as lack of awareness, capacity and expertise, especially in low and middle income countries.
We also touched on the unique scientific opportunities available and the lessons we can learn from them. For example, we explored the implications of the recently published, surprisingly high prevalence estimate from South Korea; an epidemiology study Autism Speaks funded in a region of South Africa endemic for AIDS to explore the potential risk of a compromised immune system on brain development (link to KZNU study); and the promise of eHealth and distance-learning technologies in the global dissemination of best practices.
Importantly, Congressman Smith credited a trip he took to Lagos, Nigeria, in 2007, where he learned firsthand from parent advocates the enormous daily challenges they face with little or no government support, as the impetus for the Global Autism Assistance Act that he first introduced in 2008 (HR 5446). He is planning to reintroduce the legislation later this week and wants to encourage the “Administrator for the United States Agency for International Development (USAID) to establish and administer a health and education grant program to support activities by nongovernmental organizations and other service providers focused on autism in developing countries…”
“Concerted actions are required to overcome the global challenges to effectively address autism and other developmental disabilities,” Congressman Smith concluded. “We need to continue to help increase awareness of autism at all levels and in all countries, to advocate for the inclusion of developmental disabilities in national and state health policies, to increase the availability of quality services across a continuum of care and across the lifespan, and to continue to support scientific research that will lead to more effective treatments, and one day, to effective strategies for prevention.”
For more information on the Combating Autism Reauthorization Act (CARA) of 2011 please visit Autism Votes.
To view the Congressional Hearing on the C-SPAN Video Library click here.
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