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2011: A Year of Advocacy Accomplishments

December 1, 2011 2 comments

Tis the season to reflect back on the year’s achievements.

2011 was a banner year for Autism Speaks – and for the autism community in general.  Some of the most significant milestones were reached in the area of public policy.

This year, incredible strides forward were made when Congress passed the Combating Autism Reauthorization Act (CARA), authorizing an additional $693 million in federal funding for autism research, treatments and services over the next three years. In September, President Obama signed the bill with Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his family attending the Oval Office ceremony.

Needless to say, this is an incredible win for the autism community which will help advance the support for individuals with autism.

2011 also ends with autism insurance reform laws on the books in 29 of the 50 states, with the addition of California, New York and four other states this year.  This means that more health services will be covered for more people living with autism.

Our fight is far from over.  We won’t be satisfied until all 50 states have enacted autism insurance reform so families no longer have to worry about how to pay for the instrumental development and medical needs of their family members.

Join the fight and support Autism Speaks advocacy efforts to help us hit the ground running in 2012.

Donate now.

(l to r) Rep. Chris Smith (R-NJ); Scott Badesch, president, Autism Society of America; George Jesien, executive director, Association of University Centers on Disabilities; President Obama; Suzanne and Bob Wright, Autism Speaks Co-founders; Gena, Jasper and Billy Mann, Autism Speaks.

Keep Going, Keep Making a Difference

October 31, 2011 Leave a comment

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events.

In late September, The Combating Autism Reauthorization Act (CARA) was passed through Senate and was then signed into law by our President Barack Obama. One of the champions in Senate who helped us get there was New Jersey Senator Robert Menendez. Almost 2 weeks ago he came to an autistic school called Regional Day in my hometown of Jersey City, New Jersey to give a speech about the significance of the act. What I was amazed at though was when I received a call from his office to speak at the event! In front of countless media, family, and friends I spoke about my story with autism and what the impact an act like this will have not only for me but for countless others who are affected by autism.

The Combating Autism Reauthorization Act as some may recall will grant 693 million dollars to the autistic community for the next 3 years. Even though this is a great feat we still most continue to push forward as I stress in my speech as autism never takes a vacation so neither can we.

Below is a Youtube clip of me speaking at the event that I hope you all enjoy. Thank you!

Update: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law

October 12, 2011 3 comments

By Stuart Spielman

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.

The IOM recommends that HHS use the following process to establish the initial essential health benefits package:

1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health

2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford

3. Weigh possible trade-offs through public discussion of benefit costs

4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient

The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

  • 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
  • 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
  • 38.6% of families who have a child with autism have financial problems (16.7%)
  • 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”

Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.

Family Services Office Hours – 09.21.11

September 22, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

3:03
Hi Everyone! Welcome to this week’s Family Services Office Hours! We are here to answer any questions you have about our resources and help connect you with others. So ask away!
3:04
Comment From sheila 

is there in sevices in lawrenceburg tn

3:05
Hi Sheila! Here is a link to our Tennessee Resource type! You can check for resources in your area!http://www.autismspeaks.org/community/fsdb/state.php?sid=50
3:05
Comment From Robbin 

I would like to know if there are any extracurricular activities in my area for my 16 year old son with Aspergers?

3:05
Hi Robbin! You can find lots of resources in our Resource Guide. All you need to do is click on your state, select categories like “Recreation and Community Activities” and type in your zip code.
3:06
I also suggest you order our Transition Tool Kit, it was designed specifically to help families of individuals with autism ages 14-22 on the transition to adulthood. It has lots of tips, including more about how ti get involved in the community.
3:06
Comment From Maggie 

Hi Autism Speaks. Thank you for giving us this opportunity to ask questions. I think my three-year-old son has autism. A friend of mine’s son was just diagnosed and I see a lot of his traits in my son. What should my first step be?

3:06
You can order a free copy on our website!
3:07
Hi Maggie! Thank you so much for joining us! There is a page on our website, ‘Learn the Signs.’http://www.autismspeaks.org/what-autism/learn-signsYou should also work closely with your pediatrician to be sure your son is reaching developmental milestones and to track his progress.
3:07
Also, check out our Video Glossaryhttp://www.autismspeaks.org/what-autism/learn-signs
3:09
We would also like to recommend a wonderful book, ‘ Autism Solutions’ by Dr. Ricki Robinson. Dr. Robinson will be here for a LIVE Chat on Monday, September 26th so check back for more!http://drrickirobinson.com/
3:10
Comment From Britt 

Hi Autism Speaks. My son was diagnosed with autism at 3. He is now 4. Lately a lot of people have been asking us what degree he is…and I have no idea. When he was diagnosed no oe mentioned a degree or anything like that that. Is this important to know? Does it make a difference? How would I go about finding this out? Thanks so much.

3:10
Hi Britt. Your pediatrician can help provide you with more information. However, regardless of the formal diagnosis, every child with autism is different so it is more important to focus on your child’s strengths and weaknesses and make decisions about his treatments based on what you see. You know him the best!
3:13
Comment From Connor

My wife and I are having difficulty potty training our daughter who has autism. Do you have any tips for us?

3:15
Hi Connor! Thank you so much for joining our chat. This is often difficult for families! Here are two books that we recommend!
3:15
Teach Toileting: A Revolutionary Approach for Children with Autism Spectrum Disorders and Other Special Needs
by Deborah Bialer http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523
3:15
Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd Edition
by Maria Wheelerhttp://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:15
We haven’t read them ourselves but they have been submitted to our Resource Library by other families that have found them helpful, so I hope they are helpful to you too!
3:20
Comment From Britt

Thank you. Also, How would I go about finding activities for my son do? The state law here has changed for his IEP and it now says that he should have more social interaction…but we are having a hard time finding classes and activities for him that accept and understand kids with special needs. And lastly, do you know of or have any resource information for military families? My husband is AF and its likely that we will be moving again within the next two years. So I would like to get a resourceful connection if I can before then. Thanks you again.

3:21
Hi Britt, please visit our Resource Guide. You can search by state to find activities for your son.http://www.autismspeaks.org/community/fsdb/search.phpYou can also visit our Community Connections, ‘Have Some Fun Today! Recreation, Community Activities, Clubs and More!’http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:23
The Organization for Autism Research has sponsored a program called, ‘Operation Autism.’ It is a resource guide specifically for military families.http://www.operationautismonline.org/tag/military/
3:25
ACT Today! is a national non-profit organization is a mission to raise awareness and provide treatment services to families that cannot afford the treatments and services their children require.http://www.acttodayformilitaryfamilies.org/
3:25
Comment From Britt

Awesome! Thank you so much!

3:25
Comment From John

My daughter is having a hard time transitioning back to school. She is new in her mainstream class. How can I help her peers understand what autism is and why she has challenges. Thanks so much for taking the time here!

3:26
Hi John! We are sorry to hear that your daughter is having difficulties. We recently created a Community Connections, ‘Back to School: Let’s Get Ready for a Great Year’ that provides tips about how to ease this transition.http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:27
You can also look at our School Community Tool Kit in the section ‘Peers’ for more informationhttp://www.autismspeaks.org/docs/family_services_docs/sk/Peers.pdf
3:27
Comment From Sally

How do I talk with soemone in person.

3:28
Hi Sally! We have an Autism Response Team, and our trained coordinators would be happy to speak to you. You can email them directly at familyservices@autismspeaks.org or call them at 888-AUTISM2. They are available during regular business hours.
3:37
Comment From Liz

I have a 9 year old son with Autism/Aspergers. I have not been able to find a way to explain his autism to him. I need help finding a way to talk to him in a way he will understand. Is there an easy way?

3:38
Hi Liz, this is a struggle for many families. Please visit our Resource Library where we have a list of Asperger Syndrome websites http://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:38
We also have an ‘Asperger Syndrome and High Functioning Autism Tool Kit’ Tool Kit that can be downloaded for FREE here!http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:40
Comment From allison

i have a son 24 years old that was diagnosed as high functional with a photographic memory but i feel like he should be re-evaluated

3:41
Hi Allison. Re-evaluation is always a good idea if you feel like his diagnosis may have changed. You are the one who knows your child best, so it may be a good idea to trust your instincts and bring your son back to his doctor.
3:44
Comment From Colleen

What is this CARA thing I keep hearing about? Thanks for your help!

3:44
Comment From Louisa mciver

regarding the legislation that was re-approved yesterday….mandating coverage of autism therapies.

3:45
CARA, which stands for Combating Autism Reauthorization Act, was passed the the House yesterday(YIPEEEE), but we still have to wait for it to make it through Senate. For more information, you can visit this blog post by Judith Ursitt, the Director of State Government Affairs at Autism Speakshttp://blog.autismspeaks.org/2011/09/21/tell-congress-to-pass-the-combating-autism-reauthorization-act/
3:46
We have just a 9 days left to pass the Combating Autism Reauthorization Act (CARA) of 2011 before critical provisions expire on September 30th. On September 20th, the Combating Autism Reauthorization Act passed with a floor vote in the House of Representatives. Now, we need you to switch your focus again back ot the Senate. Contact your Senators to ask themto support this important piece of legislation!
3:46
Comment From Louisa mciver

The info I read says that state operated insurance has to cover autism therapies, etc. Does this also apply to group insurance through an employer?

3:46
You can click on your state to learn what is happening there!http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
3:56
Thank you for joining us today! Our next live chat is Monday at 3PM. Dr. Ricki Robinson is going to discuss ASD and its impact on family members. She will have lots of great things to say so don’t forget to tune in!
3:57
As part of the live chat, we will be giving away ten of Dr. Robinson’s new book called Autism Solutions. So join us!
3:58
As always, if you have any other questions, please don’t hesitate to contact our Autism Response Team at familyservices@autismspeaks.org or 888-AUTISM2. Enjoy the rest of your day!

Tell Congress to Pass the Combating Autism Reauthorization Act

September 21, 2011 4 comments

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!

Countdown to CARA: On to the Senate!

September 7, 2011 Leave a comment

September 7 was an important day for the nation’s autism community as Congress began the effort to renew the landmark 2006 Combating Autism Act. By unanimous voice vote, the Senate Health, Education, Labor and Pensions (HELP) Committee moved S.1094, a bill which would renew the act for another three years, out of committee and on to the full Senate for a floor vote. While an important step, the HELP vote was just the first of several that Congress will need to complete by September 30 when the law expires.

To keep up the momentum, it is important that advocates urge those U.S. Senators who have yet to cosponsor S.1094, the Combating Autism Reauthorization Act (CARA), to do so immediately. Nearly a third of the Senate has signed on to the bill, including five new cosponsors this week, but we need more. Visit our CARA Action Center to learn how.

Getting the bill voted out of the HELP committee required that a quorum of 12 Senators were in attendance. An intensive grassroots efforts by Autism Speaks through the Labor Day weekend helped ensure that 14 members attended and all voted to approve the bill for consideration by the full Senate. When that vote will occur is uncertain.

In the U.S. House of Representatives, the CARA bill (HR.2005) similarly must first move out of the Energy & Commerce Committee before it can go to a full vote on the House floor. But before the committee acts, it must receive confirmation from Rep. Eric Cantor (R-VA), as the House Majority Leader, that he will allow the bill to go to a floor vote. Autism Speaks has launched a radio ad campaign in Rep. Cantor’s home district (Richmond-Harrisonburg) encouraging him to support CARA. Leader Cantor was a co-sponsor of the 2006 CAA, serves on the Congressional Autism Caucus and has attended Walk Now for Autism Speaks events in the past.

The original 2006 act authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. CARA would continue funding at current levels, authorizing $693 million over the next three years, without adding to the federal debt. The 2006 law was critical by establishing autism as a national health priority. Federal funding was increased by virtue of the 2006 law, leading to significant advances in the understanding of autism. The CAA 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, critical studies are underway and promising new interventions have been developed for children with autism, helping them to lead more independent lives, thereby reducing the need for publicly funded special education and social services.

Once a final bill is voted out of Congress, it goes to President Obama who has promised to sign a reauthorization bill this year. ALL of these steps must be completed by September 30 when the original act expires. To track the progress of the CARA legislation, visit the CARA home page at Autism Votes.

Countdown to CARA: Step One on Sept. 7

August 31, 2011 1 comment

With just a month to go, time is running short for Congress to renew the landmark Combating Autism Act of 2006. A critical first step arrives Wednesday September 7 when the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee takes up S.1094, the Combating Autism Reauthorization Act of 2011(CARA.)

It is essential that a sufficient number of committee members attend the September 7 meeting and then vote to send the CARA bill on to the full Senate for a floor vote. Visit our CARA Champions page here to:
1) find out if your Senator is a member of the HELP Committee
2) make sure they have RSVP’d to attend this critical hearing and
3) find out how to encourage them to RSVP if they have not.

Meanwhile, the U.S. House of Representatives must also vote its version of the CARA bill (HR.2005) out of the Energy & Commerce Committee and on to a floor vote. Once these steps are taken, the House and the Senate must agree on a final version of the CARA bill before it can be sent to President Obama for his signature. This is a lot of work! And it all has to get done by September 30!

Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law 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 CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.

Visit our CARA Action Center to find if your Senators and Representative are cosponsors. If they are not cosponsors, find out how you can get them to sign on.

Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress 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. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing 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

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