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Posts Tagged ‘CARA’

Power in Unspoken Words

August 18, 2011 37 comments

Sometimes words that aren’t actually spoken out loud are the most powerful of all. Lou is the married father of three. His eldest daughter has autism. You can read more at blog, Lou’s Land.

A message from Lou:

Sometimes anger can really inspire you. Sometimes it is the simple ideas that are the most effective. When the two come together, it can lead to something really special. That has been the experience I have had with my “Fixing” Autism video.

I don’t think anybody would ever describe me as a braggart, but this time I am not going to shy away from being proud of something I created. Probably because this time it is personal. Have you ever reached your limit? On August 13th, I had reached mine.

I had a simple plan. Share my story and back up my frustration with facts. The numbers had been driving me mad for months. While doing some research on autism statistics, I had come across a page on the Autism Speaks website entitled; “Facts about Autism” and the numbers were dizzying. The disparity in funding made me sick to my stomach. Most people of child bearing age know the basic statistic that 1 in 110 children in the US will be diagnosed with Autism Spectrum Disorder, what most people don’t know is the frustration that comes from the parents of autistic kids when they see the complete lack of equal funding for something that appears epidemic in nature, particularly to those involved.

I must have visited that page 10 times. Each time I looked at the numbers my frustration increased. As I stared at my computer screen, I felt like more people needed to understand these statistics. They were absolutely vital to the war that parents dealing with ASD are fighting every day. Those numbers are why these parents have to struggle. But while I found the numbers important and interesting, I really felt like they were dead on the page. Reading statistics is not exactly exciting. It isn’t “sexy” as the Hollywood types say. That is when the light bulb turned on.

I had to give the numbers meaning. I had to personalize them. I had to add a human element to what those statistics meant to the parents of an autistic child. To do that, I knew that I would have to make myself a little vulnerable. I had to tell our story and why I felt those numbers had to be shared. What I realized as I made my notes was that it really wasn’t MY story. It was OUR story. The autism community has a shared experience of embarrassment, shame, anger and helplessness. Often times, all of these chips stacked against us result in us being quiet and shutting down. We become discouraged and for fear of being denied yet another service we view as vital but the insurance companies see as “experimental”… we do nothing, paralyzed by fear.

Powered by a lack of sleep from staying up with Bianca most of the night, I opened up some notes I had emailed to myself and started to transfer those thoughts to index cards. I knew exactly what song I wanted to use because a few months earlier I broke down in the car when it came on the radio. It made me think about my daughter. As a man, I could certainly relate to the idea of desperately wanting to “fix” something. That feeling tends to be instinctual to us men folk when we see that something is wrong. We want to fix it. Sometimes we make it worse, other times we may just confuse the situation, but when we are really fortunate we can set things right.

That is what I hoped to do… make things right. Affect change. Change the dialogue. Make other parents that are in my situation feel like they can scream from the mountaintops about the injustice and the frustration that comes wrapped up in a red-tape bow every time you have to talk to the insurance company, or go over an IEP. I wanted to make it so that others knew that it was OK to be mad as hell that they have filled out yet ANOTHER form asking what your child’s limitations are, while seeming to care less about what they excel at. I wanted to affect a person with neuro-typical kids in such a way that when they see a child acting up in public, they glance over not with disdain but with compassion.

So I had a webcam, index cards, an MP3 and most importantly the raw, honest truth. After I edited the piece together I clicked play to review my work. I felt like I was watching it for the first time. As if I wasn’t even the one in the video… and I knew it was right. Sure there are some technical things I would like to change… but the message was dead on.

I debated just putting the video up on my Facebook page, but that was safe. I really wanted this message to be heard. I was proud, and I was still angry. I uploaded it to YouTube, told some friends about it, and shared it on the Autism Speaks Facebook page. The reaction was immediate and incredibly humbling. It gave me the motivation to promote it with a little more gusto. An old co-worker of mine believed in the message so much that she started to promote the video all over the Twitterverse. That gave me even more energy to feed off of, and before you knew it the video was being seen by important people in the autism community. Imagine my surprise when I took Bianca to therapy with the intention of telling the therapists about the video only to have them tell me that they saw and loved it before I could bring it up. I was stunned.

So I encourage my fellow parents out there in Autismland… don’t just talk to others about your experience… SCREAM it. It doesn’t have to be a video. All you need is to own the truth. It is OK. It isn’t whining if there is injustice. When insurance companies will pay for people’s allergy shots because their new girlfriend has a kitty, but not for my daughter’s speech therapy… and she CAN’T COMMUNICATE… it is OK to be mad. Let’s end the shame and the silence and start holding people accountable.

 

The Combating Autism Reauthorization Act (CARA) of 2011 would reauthorize the landmark Combating Autism Act of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders.

For more information on autism legislation and advocacy, please visit Autism Votes.

Voters: MARK YOUR CALENDARS

July 27, 2011 1 comment

Next Wednesday–August 3– marks a critical day in the federal government’s commitment to address the staggering rise in autism. That is the day Congress takes an important step to renew the Combating Autism Act of 2006. Unless Congress renews the law by September 30, this federal commitment in support of autism will disappear. The prospects for continued research, as well as promising new treatments, will be cast into disarray.

The U.S.Senate Committee on Health, Education, Labor and Pensions (HELP) will meet on August 3 to act on S.1094, the Combating Autism Reauthorization Act (CARA), which is sponsored by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY.) In very short order, 21 other Senators have signed on as co-sponsors of this bill, which enjoys wide support from both Republicans and Democrats. That’s the case as well in the House of Representatives, where a companion bill (HR.2005) has been introduced by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA.)

The August 3 Senate hearing is a critical early step in renewing the Combating Autism Act of 2006. The hearing will enable the 22 Senators who are members of the HELP committee to offer their input. This body must act on the bill in order to get it before the full Senate, important steps to getting it cleared by the House and sent to the President’s desk by September 30. Until the committee approves the bill, the full Senate will be unable to act.

The autism community is fortunate that nine members of the Senate HELP committee, including ranking member Senator Enzi, are sponsors of CARA. But sponsorship is not enough. These Senate members, along with 10 other committee members who voted for the original 2006 act, must demonstrate their support at the August 3 hearing for a strong continued federal role for autism research, treatment and services.

Since the 2006 act was approved with near-unanimous Congressional support and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually.

The CAA authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. It required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.

The 2006 law established autism as a national health priority and increased funding, leading to significant advances in our understanding of autism. But all of that progress could grind to a halt September 30 unless Congress sends President Obama a bill reauthorizing the Combating Autism Act. CARA would continue federal funding at current levels – that’s $693 million over the next three years dedicated exclusively for autism-related work by the National Institute of Health, the Centers for Disease Control and Prevention, and other federal agencies. The President already has promised to sign a reauthorization bill this year.

You can help. Visit our CARA Action Center where we will help you send a clear message to the members of the Senate HELP Committee. Sponsoring the bill is not enough—your Senators need to show up August 3 to carry the nation’s fight for answers to autism.

Promises Kept – NJ Congressmen Lead the Way on CARA

June 8, 2011 3 comments

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.

Chris Smith, Suzanne Wright, Bob Wright, Christine Bakter

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.

Rebecca Shaffer Stelzner, Senator Menendez, and Christine Bakter

A Mother’s Thank You to Her Senator

December 21, 2010 3 comments

This guest post is by Shannon Knall, the Autism Speaks Connecticut Chapter Advocacy Chair and mother of three boys – her oldest has autism.  She worked with state legislators to pass the autism insurance reform bill in 2009.

I first met Senator Chris Dodd at a press conference in Washington DC in 2008.  I have lived in Connecticut for almost my entire life. Senator Dodd is a political icon here and as a result I was certainly intimidated by the mere thought of meeting him. How I wound up standing right next to him with an autism community delegation from Connecticut I have no idea, yet there I was.

Flashbulbs lit up as he entered the room. Without missing a beat, he strode to the podium and greeted Autism Speaks Co-Founders Bob and Suzanne Wright. He then turned to me. With an outstretched hand and a warm smile, he introduced himself.  We had a brief exchange as I explained to him that my son had autism and thanked him for his ongoing service to the disability community.

He looked at me and said, “Moms like you make me want to do everything I can to help. Never stop being the voice for your son.”

I haven’t.

Neither has Senator Dodd.

Without a doubt, his retirement will be a palpable loss for our community.

Before his last term comes to an end in January, he took a final stand for the autism community through the introduction of the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044).  This Act furthers the Senator’s work which he began through the Combating Autism Act (CAA), signed in to law in 2006. The , CAA, among other provisions, created a desperately needed focus on research in to the cause, treatment and cure for autism.  That original law will sunset in September of 2011 unless it is reauthorized by Congress to continue providing funding necessary for research and services and if that happens the momentum that has built up since December 2006 will sunset with it.

Prior to Senator Dodd’s introduction of the CAA, autism was an intermittent blip on the federal legislative radar.  Our community had been in desperate need of a comprehensive plan, one that is broad in scope but specific in delivery to address the spectrum of needs of our loved ones with autism.  The historic unanimous passage of the CAA changed all of that. With passage of CARA comes an  opportunity for autism to remain a continued focus of political attention in addition to matching more aggressive action in response to the autism epidemic.

As your constituent and as an advocate for my son, thank you Senator Dodd for your unwavering compassion for our families in our community not only here in Connecticut but nationwide, and the courage you had, once again, to be our champion.

For more information on the Combating Autism Reauthorization Act of 2010, please visit www.AutismVotes.org/CARA.

Combating Autism Reauthorization Act 2010 Introduced! Senators Dodd and Menendez Are Again Champions for Nation’s Autism Community

December 20, 2010 2 comments

We are pleased to announce that Senator Chris Dodd (CT), along with Senator Robert Menendez (NJ) introduced the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044) late this past Friday. This new legislation would reauthorize the landmark Combating Autism Act of 2006 (CAA), significantly increasing both the depth and breadth of the federal response to the national and public health emergency posed by autism spectrum disorders (ASD).

As a result of the 2006 CAA, our community has made tremendous strides in federally-funded and directed research. It was the detailed surveillance by the Centers for Disease Control under the CAA that identified the increasing prevalence of autism: now a staggering 1 in every 110 American children – including 1 in 70 boys – is diagnosed with an ASD, making it the nation’s fastest-growing, serious developmental disorder.

Additional significant advances under the CAA have been realized, including:

  1. Improved ASD screening methods and universal screening recommendations;
  2. Development of effective early intervention methods for toddlers with autism;
  3. Creation of clinical networks aimed at improving physical and behavioral health;
  4. Identification of several autism susceptibility genes, leading to discoveries of new methods for diagnosis and treatments; and
  5. Development of best practice standards of care for co-morbid medical conditions including sleep and gastrointestinal disorders.

The Combating Autism Act of 2006 finally put us in the right direction toward formulating and implementing an effective research strategy to investigate the mysteries of autism. It is imperative that we continue to refine and intensify research into the potential causes of autism and determine ways we can improve the lives of people living with autism today, as well as their families.

Please support the CARA by taking action today! Your support on this issue is crucial in order to continue to address the public health crisis of autism and to help individuals with autism and their families across the country.

Here’s How You Can Help:

1) CALL AND THANK SENATORS DODD AND MENENDEZ! Call Senators Chris Dodd (CT) and Robert Menendez (NJ) and thank them for their leadership in introducing the Combating Autism Reauthorization Act.

Senator Dodd – (202) 224-2823
Senator Menendez – (202) 224-4744

2) CLICK HERE TO SEND AN EMAIL TO YOUR U.S. SENATORS AND URGE THEIR SUPPOR FOR CARA! Make sure to personalize the email and explain briefly why your Senators’ support for this bill would mean so much to your family.

3) SIGN UP TO STAY INFORMED! Check out www.AutismVotes.org/CARA for updated news and information on this bill and sign up to receive our email action alerts.

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