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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.

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