Parents and caregivers of children with autism know only too well the difficulty of predicting the need for healthcare services and high cost of providing this care for autism treatment and related health issues. Planning for medical expenses in advance can help relieve some of the stress and allow you to focus on getting your child the care he or she needs.

A new, independent not-for-profit can help shed light on what has often been considered a “black box” of healthcare costs and help families to better prepare to manage expenses. FAIR Health, whose mission is to bring transparency to healthcare costs and health insurance information, offers a variety of free online services. Now families can look up the cost of healthcare services on the consumer website, www.fairhealthconsumer.org. The FH Consumer Cost Lookup on the site is based on a database of billions of billed medical and dental services.

The FH Consumer Cost Lookup includes medical and dental cost data for every area in the United States. Families or caregivers of children with autism can use the service to estimate what they may be charged along with estimates of what their insurers might reimburse for out-of-network services. Now it is possible to estimate how much you will have to spend before you decide whether to go outside your insurer’s network for a medical or dental service.

For example, several tests and procedures must be performed before a diagnosis of autism can be determined. One very common diagnostic procedure is a developmental behavioral screening ‒ CPT code 96110. A family in Los Angeles with a child undergoing screening for autism can use the FH Consumer Cost Lookup to find out the potential cost of this procedure by entering the zip code for the area where the procedure will be performed and the CPT code (or name of the procedure), as illustrated in the screen shot below.

In the next screen, an estimate of the total charges is shown, with a breakdown of the estimated reimbursement and out-of-pocket costs. For a developmental behavioral screening provided in Los Angeles, it is estimated that the provider will charge $124.99. If the procedure is covered by insurance at a 70 percent rate and is performed by an out-of-network provider, the estimated out-of-pocket cost to the consumer is $37.50.

If you know the terms of your insurer’s plan, you can use the FH Consumer Cost Lookup to obtain an estimate of what you may be responsible for paying for medical services from an out-of-network provider. While this estimate is based on FAIR Health’s extensive data on the fees that providers in your area bill for healthcare services, a variety of other factors, such as deductibles or copays, may influence the exact amount that you will have to pay for services received out-of-network.

The website features an easy-to-use slider tool that allows you to personalize the cost estimate by adjusting the level of reimbursement based on the provisions of your health insurance plan.

The website also offers clear, unbiased educational articles and videos about healthcare insurance. For instance, the educational series, “Reimbursement 101,” can help consumers better understand healthcare insurance and the many variables that affect reimbursement.

Bell discussed the Caring for Military Kids with Autism Act (HR.2288) which would ensure that the military’s TRICARE insurance program covers all military personnel, regardless of their duty status. As now structured, members of the military lose autism benefits for their children when they retire, even when wounded in action and medically retired. At a Congressional briefing Tuesday on the issue, Rep. John Larson of Connecticut, the sponsor of HR.2288, called the treatment of military families raising loved ones with autism “immoral.”

Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered

Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions.  There are good and bad school districts for special education.  Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program.  With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.

Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.

Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.

“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’  But I had no answers for him. I had no hope to offer.”

Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments  and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.

Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”

Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”

Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.

“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.

Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”

You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.

Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.

Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.

The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”.  The radio operator answers the call; “This is Iron Gray TOC.  Roger, requesting air support at this time.”

Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan.  I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater.  I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.

So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved.  My training kicked in.  Clear the airspace and give me a fire mission of 155mm artillery. 

It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in.  AUTISM!?  Artillery isn’t going to help that.

Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard.  I just could not believe my little girl had autism.  Yes, she was born with multiple disabilities but autism was never on the radar.  Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism?  Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me.  To say I was busy during this deployment would be a gross understatement.  The TOC was the heart of the Battalion’s operations and the heart never stopped beating.  However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around.  Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies.  I assumed RM’s school would be all over that.  Evidently, as it turned out the school system in our town was not a “Friendly” element.

Never leave a fallen comrade.

Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind.  I was appalled.  Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator.  It began to affect my performance.  I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind.  Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.

I decided to weigh in on the issue with the town.  Lucky were the town personnel who were failing my child that were out of range of my artillery support.  I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan.  Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school.  Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care.  Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.

TRICARE should be like Combat Support.  It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.

But many more will be unable to make it to Washington for the briefing.

Autism Speaks believes their voices need to be heard as well. We are making it possible for these military families to record a brief story about their experiences and upload it to our YouTube page. We will share as many of these videos as possible with Congress, including airing portions of them during the meeting.

Visit our YouTube page to find out how you can participate!

HHS is encouraging public input on its intended approach.  To help the autism community respond, Autism Speaks has analyzed the HHS proposal as it relates to autism coverage. Comments should be directed to HHS by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.

Under the HHS proposal, the health care plan a state chooses would serve as its standard for all health care plans, whether they operate inside the health insurance exchange created in the state, or in individual and small group health care plans offered outside the exchange. The benchmark plan would set benefits for all health care services, including autism interventions.

The ACA directs HHS to define essential health benefits (EHB) – a set of core health services.  Certain health plans would then have to cover those benefits beginning in 2014. Those plans include: individual and small group health plans that were not in effect the day the law was signed in 2010; Medicaid benchmark and benchmark-equivalent; and Basic Health Programs (optional state programs for individuals and families with incomes between 133 and 200 percent of the federal poverty limit).

The law provides that the EHB include items and services within the following 10 benefit categories:

1.     Ambulatory patient services

2.     Emergency services

3.     Hospitalization

4.     Maternity and newborn care

5.     Mental health and substance use disorder services, including behavioral health treatment

6.     Prescription drugs

7.     Rehabilitative and habilitative services and devices

8.     Laboratory services

9.     Preventive and wellness services and chronic disease management

10.   Pediatric services, including oral and vision care

States must pay the cost of any benefits required by state law that go beyond the EHB.  In a challenging economy, states may be reluctant to assume the cost of additional services, so what is covered in the EHB really matters.

With the stated aim of balancing “comprehensiveness, affordability, and state flexibility while taking into account public input throughout the process of establishing and implementing EHB,” HHS for 2014 and 2015 gives states a choice of four benchmark plan types:

1.     the largest plan by enrollment in any of the three largest small group insurance products in the state’s small group market

2.     any of the three largest state employee health benefit plans by enrollment

3.     any of the three largest national Federal Employees Health Benefits Program plan options by enrollment

4.     the largest insured commercial non-Medicaid health maintenance organization (HMO) operating in the state

If a state chooses a benchmark subject to state mandates, that benchmark would include those mandates in the state EHB package. HHS intends to assess the benchmark process for 2016 and beyond and may exclude some state benefit mandates from the state EHB package.

HHS will require states to supplement coverage if a benchmark plan is missing one of the 10 categories of benefits. For example, if a state’s benchmark plan does not cover habilitative services, such as speech therapy for a child with autism who is not talking at the expected age, HHS could require the plan to add that care.

HHS is considering two specific options for benchmark plans that do not include coverage for habilitative services:

1.     requiring habilitative services to be offered at parity with rehabilitative services, or

2.     letting plans decide which habilitative services to cover

Under the second option, plans would report their coverage decisions to HHS, which would evaluate them and further define habilitative services in the future.  This option might give plans discretion to refuse coverage for autism.

Another concern is applied behavior analysis (ABA).  All plans must cover mental health and substance use disorder services, including behavioral health treatment, and HHS acknowledges that mental health parity applies in the context of EHB.  Many of the benchmark plans will follow state law that makes ABA a covered benefit.  But what if a benchmark plan does not cover ABA?  HHS has provided no guidance, even though the ACA demands this care. (Reference A, B)

HHS intends to require that a health plan offer benefits that are “substantially equal” to the benefits of the benchmark plan selected by the state and modified as necessary to reflect the 10 coverage categories.  In other words, HHS will allow insurance companies some flexibility to adjust benefits, including the specific services covered.  Allowing substitution within or across coverage categories introduces more uncertainty – it could either enhance or dilute autism services.

To respond to the HHS proposal, send your comments by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.

As children with autism become young adults, many parents have concerns and confusion about their child’s health insurance coverage. The ACA will further change the landscape as its provisions are implemented over the next few years.

The age at which adults living with autism are no longer considered a “dependent” on their parents’ health insurance policy can have significant impact. Traditionally, once children reached the age of 19 they were no longer considered a “dependent” on their parents’ health insurance plan and coverage terminated. The only exception was for children who remained full-time students. For children with autism, though, traditional post-secondary education often might not be their next step, thus eliminating their ability to remain on their parents’ policy.

The ACA provides for young adults in any state to be covered on their parents’ health insurance until the age of 26 – and there is no requirement that the child remain in school or even live at home. But as the language of the ACA continues to be interpreted and applied, it is still important for parents to know what is available in their home state.

Prior to the enactment of the ACA in 2010, many states had already recognized the need to cover young adults and amended their laws to require that state-regulated health insurance plans cover dependents past age 19. While the ACA is a great advancement in addressing uninsured young adults – particularly those struggling with intellectual disabilities such as autism – some states provide more favorable coverage. Under the ACA, states are required only to change their laws to be in line with its requirements. Put another way – the ACA represents the minimum of what states must provide, but states can still provide coverage that is more favorable.

While most state laws establish a top age that is equal to, or slightly younger than, the ACA’s requirement, at least four states have more favorable coverage (with some restrictions):

Policy owners should be aware that state regulations apply only to fully funded insurance plans. If your company has a self-funded insurance policy, dependent coverage requirements will be governed by the ACA rather than state law. If you are unsure which type of policy your employer provides, you should contact your human resources department.

Disabled Dependents

Nearly all state laws allow dependents to remain covered indefinitely as long as they remain mentally or physically dependent, regardless of age. When looking into your state laws, you may find one of the following statements:

1.       The most common version, found in over 30 states, includes something similar to the following:
“…attainment of limiting age shall not operate to terminate the coverage of the child if at such date the child is and continues thereafter to be both (1) incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child’s physician… and (2) chiefly dependent upon such employee or member for support and maintenance.”
See, e.g., Con. Gen .Stat. Ann. § 38a-515.

2.       Other states include the following language within the statutory definition of a “dependent:”
“…an unmarried child of any age who is medically certified as disabled and dependent upon the parent.”
See, e.g., Colo. Rev. Stat. Ann. § 10-16-102.

3.       Yet another simpler (and vaguer)version lists the limiting age and requirements for young adults and then says that coverage will also be extended to:
“…any other person dependent upon the policyholder.”
See, e.g., Del. Code Ann. Tit. 18, § 3303.

To whom, and how far, this “any other person” language extends is unclear. And despite the inclusion of “disabled dependent” language, the statutes alone do not tell parents how this language is interpreted or how the polices are implemented.

 If you have questions about coverage of your adult child with autism, contact your human resources department.  If they cannot answer your questions or if you lack confidence in their answers, call your state department of insurance.

As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?

The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.

Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!

To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.

Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.

See how many people YOU can activate to help!

Matthew P. Sapolin

My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.

I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC.  We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.

In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.

Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!

My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20^thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.

Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.

As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.

I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.

(l-r) Matthew Sapolin, New York City Mayor Michael Bloomberg, Autism Speaks President Mark Roithmayr

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.

Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.

One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!

“When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.”

Have a wonderful holiday season with your family!

Science

Autism Speaks in Shanghai

• To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.

• Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.

• Research Results A number of our research grants came to fruition this month with high-profile papers in major publications. Among them were Eric Courchesne’s findings on altered prenatal brain development in children with autism (Journal of the American Medical Association) and Schahram Akbarian’s association of “epigenetic” changes with autism (Archives of General Psychiatry). Both studies were made possible by a combination of donor dollars and family participation in our Autism Tissue Program.

• Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Enzo’s mom talks insurance

• Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
• The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
• Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.

• Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
• Creative Housing Solutions
• Autism Risk and Safety

• Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at familyservices@autismspeaks.org.

Advocacy

Autism Law Summit

• A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.

• Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.

• And they’re off! The candidates vying for the presidency in 2012 have begun debating and preparing for the primaries. Autism Speaks has made available its four-part Blueprint for an Appropriate Federal Response to Autism to interested candidates. In addition, we are tracking notable statements and campaign developments as they relate to autism.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

• New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.

• Quotes for Autism Thanks to Allstate, you can get a no obligation, FREE quote on any insurance product Autism Speaks gets $10!

• Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.

• Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Autism Speaks is a member of the Consortium for Citizens with Disabilities, which released the following statement on the deadlock of the Super Committee from Donna Meltzer, CCD Board Chair:

The Consortium for Citizens with Disabilities (CCD), a coalition of approximately 100 national disability organizations, shares its disappointment today that the Joint Select Committee on Deficit Reduction has failed to come up with a deficit reduction package that addresses the nation’s debt in a manner that is balanced and fair.  While the CCD is very pleased that members of the Super Committee worked to protect entitlement programs that are critically necessary for people with disabilities such as Medicaid and Social Security, the failure to complete a comprehensive package leaves consortium member organizations very concerned about how sequestration will impact the nation’s 54 million Americans who live with disabilities and their families.

CCD knows that people with disabilities and their families depend on a safety net of programs that include both entitlement and discretionary spending.  Because the Committee was unable to enact a thoughtful, balanced and collaboratively developed deficit reduction package, we now face devastating mandatory cuts to many critical programs serving people with disabilities in sequestration. The nation’s budget cannot be balanced on the backs of those with disabilities and chronic health conditions.

A new report released this month by the Census Bureau shows that 49.1 million Americans are poor.  People with developmental and other disabilities, who continue to face the highest unemployment rates, are overrepresented in that number.   Especially in times of a weak economy and high unemployment rates, programs that support people with disabilities – such as supported employment, family supports, food stamps, Medicaid and other community based supports and services – must continue and be protected from across-the-board budget cuts.

CCD urges the Congress to work in a bipartisan manner to enact balanced reforms while investing in its most valued resource – the American people.

The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.

The new accounts would be authorized under the Achieving a Better Life Experience (ABLE) Act of 2011, which was introduced today in Congress with the support of Autism Speaks, The Arc, the National Down Syndrome Society and a host of other disability rights groups.

The ABLE Act, sponsored with bi-partisan support in the House by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC), would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.

“This is important, common sense legislation that will provide an incredible financial boost to families affected by autism and other disabilities who are struggling to pay for critical services,” said Bob Wright, Co-founder of Autism Speaks. “If we allow families to save tax-free for college, it is only fair that they be permitted to save to meet the needs of all of their children.”

Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living.

“According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime,” said Peter Bell, Autism Speaks executive vice president of programs and services, who spoke at a Capitol Hill press conference where the introduction of the bill was announced.

“Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more of our children with autism age to adulthood, our hands remain tied in planning for their future, said Bell. “The need for new resources to provide them with necessary care and services is imperative.”

Nora Fitzpatrick and Robert Stephens of Gaithersburg, MD, whose six-year-old daughter, Rory, has autism say the ABLE accounts could help then plan for a more secure future when Rory will join the rising tide of Americans with autism who enter adulthood without assurances of services or financial security.

“In the past four years we have seen huge strides in improvement as well as baby steps,” said Nora. “We’ve also seen behavioral issues pop up and health issues that have set Rory back. The uncertainty of everything is a huge part of the equation for us. The opportunity to start a 529 plan for Rory would be a great way to give us some certainty and comfort for the future.”

Learn more about the ABLE Act on autismvotes.org and ask your members of Congress to cosponsor the ABLE Act.

House Co-sponsor Rep. Ander Crenshaw (R-Florida) dicussed the ABLE Act in a House floor speech on Thursday, November 17.

Click to view slideshow.

My husband and I have a 13-year-old son, Ben, whose symptoms appeared when he was very, very young.  Ben started getting occupational therapy, physical therapy, speech therapy and sensory integrative therapy at 14 months of age, then at 30 months came under the care of Dr. Rick Solomon in 2001. Still, Ben didn’t speak. In fact, he was a mess.

We were family #19 in the PLAY Project. Thanks to the PLAY Project and excellent speech therapists, Ben is doing well today. He is a seventh grader in a regular classroom, although he gets support through extra study hall and help with his reading comprehension. His grades are good (nothing below a B). He seems to be having a normal childhood.

Ben’s Bar Mitzvah was on October 22nd, and his friends (73 of them, to be exact) were coming.  (Better yet, he is getting invited to the Bar Mitzvahs of other kids that he knows.)  Ben’s Bar Mitzvah fell on the day when Jews read the creation story in synagogues around the world. Because Ben is really interested in weather and space, we were delighted that he was assigned a Torah portion that he could identify with.

But, Ben had to write a sermon.

Here is a copy of Ben’s sermon for you to read.  It’s a real testament to the way his brain works (e.g. I told him we would read how God created the universe, and he expected there to be a recipe!) But, it also shows that autistic children can recover to the point of being spiritual.

Dr.  Solomon, his wife, the PLAY Project consultant who worked with Ben for three years, and the speech therapist who worked with Ben for five years will all be at his Bar Mitzvah—with bells on!  (You should have seen Ben’s face when I used that expression to describe their excitement!) We are looking forward to a great celebration—made possible by the great work that folks do to help autistic children get well and reach their true potential.

If you ever need a child as “living proof” that early intervention works, Ben is Exhibit A. I shudder to think what would have happened without the PLAY Project.

Autism Speaks awarded Dr. Solomon’s institute a $15,000 grant in 2007 for a project called Training Respite Care Providers in The PLAY Project Intervention for Autism.

 The PLAY Project is a practical application of DIR (Developmental, Individual-differences and Relationship). Dr. Solomon and his group have trained nearly 200 therapists and teachers in 70 agencies across 22 states to train parents to implement The PLAY Project with children. This project was a collaboration with Lansing Area Parents Respite Center to train its staff of respite care providers in The PLAY Project techniques. By training respite care providers, they improved engagement and interaction with the children that they work with.

This was a pilot project to develop a new model for respite care for children with autism spectrum disorder.

Autism Speaks has applauded Governor Andrew Cuomo for signing one of nation’s strongest autism insurance reform measures into law and defended his action in letters-to-the-editor published in the Wall Street Journal and the New York Post.

We are excited that New York Governor Andrew Cuomo has signed into law one of the most comprehensive autism insurance reform measures in the nation, Assembly Bill 8512. This new law requires insurance companies to provide coverage of critical autism therapies for both children and adults. Autism Speaks Co-founders Suzanne and Bob Wright and representatives from New York’s autism community gathered for the bill signing at the Governor’s Office in Albany. For a fact sheet on the new law, go here.

Sponsored in the New York Assembly by Assemblymember Joseph Morelle (D-Monroe) and in the Senate by Sen. Charles Fuschillo, Jr. (R-Nassau,) the new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will take effect in 12 months – on November 1, 2012 – and allow up to $45,000 a year in ABA treatments with no limits on age or number of visits.

From left, Sarah Milko, UNYFEAT; Susan Hyman, M.D., from U of Rochester (ATN site); Paige Pierce, NYSFT; Jan Campito, ASA Albany; Neil Pollack, Anderson Center; Bob Wright, Co-founder, Autism Speaks; Suzanne Wright, Co-founder, Autism Speaks; Judith Ursitti, Autism Speaks; Assemblyman Joe Morelle, Bill Sponsor; Jim Fahey, Autism Speaks N.Y. Advocacy Chair; Mike Smith, FAIR Autism Media; John Gilmore, Autism Action Network; Peter Bell, Autism Speaks

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!

The inaugural Puzzle Pieces of Our Community event was held to honor those individuals and corporations who have supported the autism community. The main honoree and keynote speaker was Senator Marco Rubio who gave an incredible address about his experience with autism both politically and personally. He spoke about his involvement in the process of passing insurance reform here in Florida. He touched on his personal connection through members of his staff with children on the spectrum. I think the most impactful part of his address was his passion for wanting to take swift and bold action because of the staggering number of people in the United States living with autism in the United States today. He is resolute in his desire to ensure that we take notice as a nation as the disorder will impact us as a nation. (I’m not sure we could have written it better if we did his speech ourselves). He moved everyone in that room.

The other honorees included:

Baptist Health of South Florida for their South Miami Hospital Child Development Center which offers comprehensive diagnostic and early intervention services which is the greatest example of their commitment to helping families living with Autism.

CBS4 for excelling at creating awareness about autism research, disseminating important information to the community about services.

Greenburg Traurig for 10  years of support for the Miami Walk Now for Autism Speaks. Their role is instrumental in providing families with a day of sharing, support and hope.

Univision for being a social worker to the Spanish speaking minority that desperately needs vital information regarding services, resouces and treatments.

The evening was a success on all levels. The Senator confirmed his attendance only 4 weeks prior to the event but we sold enough tickets and tables to fill the room in that short time period. His keynote speech was both informative and inspiring! The silent and live auctions combined a significant portion of the fundraising effort and “Fund the Mission” was particularly successful raising more than $10,000 in a period of about 10 minutes. Most importantly, awareness was raised within the corporate community with individuals giving after the event and asking how to get involved with future events including the Walk. There is no greater reward than seeing how people are touched by the cause.

This event grossed over $100,000 which is a tremendous success for an inaugural event and I think a testament to the incredible efforts of a committee determined to reach our goals. None of which is possible without the fearless leadership of Lula Folgosa. It is her selfless giving of time, energy and love that we were able to have this event and lay such a strong foundation for the future of events like this here in Miami.

Click to view slideshow.

~ H. Jackson Brown, Jr.

by  Judith Ursitti, Director, State Government Affairs

The 6^th Annual Autism Law Summit convened this past weekend at a new location — the University of Utah’s Susan J. Quinney School of Law, but with the same underlying theme — the passage, implementation and enforcement of meaningful autism insurance reform across the nation.  Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.

It’s worth noting that the Summit has evolved from an informal gathering of a handful of advocates passing around a hat to collect pizza money, to a capacity-level event, involving more than 100 registrants from 33 states. And once again, hope and ideas intersected with the blood, sweat and tears of parents, providers, lawyers, legislators and regulators, creating undeniable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.

A highlight of the event was the presentation of the 2011 “Speak Out”  award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.

Special guests, Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.”  Honored as part of the presentation were the five states that passed legislation since the previous Summit:  Arkansas, Virginia, West Virginia, Rhode Island and California.

Other highlights of the jam-packed agenda included:

·     A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform

·     A panel discussion on “Convincing Self-Funded Companies to Add an Autism Benefit.”  The panel consisted of providers Bryan Davey, PhD, BCBA-D and Colleen Allen, PhD, CCC/SLP; employer representatives Doug Green of  DTE Energy and Jeremy Shane of HealthCentral; as well as advocate Karen Fessel, Dr. PH  (You can learn more about convincing your self-insured employer to add an autism benefit here.)

·     An analysis of the provider credentialing issue by panelists Misty Bloom, JD of the Behavior Analyst Certification Board; Andrea Chait, PhD, BCBA-D, NCSP, and Jill McLaury, MS BCBA

·     An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger and Dave Honigman

·     A presentation on implementation issues by panelists Billy Edwards, MS, BCBA, of Texas; Mike Wasmer of Kansas, and Amy Weinstock of Massachusetts sharing their experiences implementing autism insurance laws in their respective states

·     A primer on developing successful grassroots advocacy at the state level to gain autism insurance reform by Shelley Hendrix, Autism Speaks, Director of Grassroots Development

·     A robust discussion of “Enforcement of Coverage” by panelists Adam Cole, JD, General Counsel, California Department of Insurance; Jacqueline Eckert, MedClaims Liaison; Dan Unumb JD; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the Missouri Department of Insurance

·     A mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates

·     Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement

As attendees dispersed Sunday morning, heading back home to different parts of the country, smiles and hugs of encouragement were shared by colleagues old and new.  Once again, the connection of hope and ideas had been sparked.  Truly, 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, step by step, state by state, plan by plan, family by family.

******

Special thanks to our sponsors:  Utah Autism Coalition, Butterfly Effects, MedClaims Liaison and Autism Services Group.

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.

If you know of things going on that we aren’t including, please SHARE them by leaving a comment! We want to know what you think is important.

Science

• New toolkit launches We began our fall rollout of Autism Speaks Autism Treatment Network (ATN) tool kits, beginning with “Should My Child Take Medication for Challenging Behavior?” and “Taking the Work Out of Blood Work,” the latter in both provider and family versions. We held a related webchat, September 14 as well (follow the link for the transcript).

• Science Pressents… We presented ATN-supported research on autism and attention deficit and hyperactivity disorder (ADHD) at the annual conference of The Society for Developmental and Behavioral Pediatrics. The study’s findings – that ADHD symptoms ADHD Symptoms in children with autism are common, problematic and likely undertreated – made national headlines.

• European Approval On September 13, we received final approval of the European Union Autism Innovative Medicine Initiative (EU-AIMS, a historic Autism Speaks-European Union collaboration to develop new medicines for the treatment of autism. The largest public private partnership of its kind in Europe, EU-AIMS will allow Autism Speaks to establish an international biorepository for research and to integrate our wealth of clinical information with global databases.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Download the new Grandparents tool kit from Autism Speaks

• Just for Grandparents We launched our Family Support Tool Kit for Grandparents on September 15.  The kit includes topics like:
  • Reaction to the Diagnosis
  • Your role as a Grandparent
  • Support for Your Grandchild
  • Support for Your Family
  • Taking Care of Yourself
  • FAQs from Grandparents
  • Grandparent Stories

• New Health and Wellness toolkit launched On September 29 we launched a new on-line tool kit called Health and Wellness. This new content is featured on the Autism Speaks website and includes the benefits of exercise for people with autism as well as information about nutrition and sleep.  The photographs used in the slide show were submitted from our Facebook community members! Send us more!!

• Family Services Committee Meeting On September 15 and 16 the Family Services Committee met to review the top scoring applications for the Family Services Community Grants.  The committee looked for applications that increase the services for people with autism, as well as to expand the field of service providers.  Other factors considered during the review process were innovation and creativity, ability to address the needs of the underserved, replicability, clarity of the proposal, qualifications of the organization, well documented budget and sustainability. As a result of this meeting recommendations will be made to the Autism Speaks board of directors for approval during the December board meeting.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

The White House

• President Obama signed the Combating Autism Reauthorization Act into law, this was Autism Speaks’ top legislative priority this year.

• Autism Speaks joined with California Senate President Pro-Tem Darrell Steinberg at a series of rallies urging Gov. Jerry Brown to sign an autism insurance reform bill into law. The effort received a boost in late September when the Los Angeles Times urged the Governor to sign the bill in an editorial

• Michigan has become the primary target for autism insurance reform as a new legislative campaign gears up to enact a bill into law

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Autism Speaks World Focus

• Hacking Autism As part of a collaboration on the “Hacking Autism” initiative with HP and the Flutie Foundation, Autism Speaks participated in the World Maker Faire at the New York Hall of Science on September 17 and 18. “Hacking Autism” was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. At Maker Faire, seven app ideas were announced as finalists to be built by volunteer software developers at the HP Hackathon in October. In addition announcing the “Hacking Autism” finalists, Autism Speaks used the popular tech convention as a platform to disseminate information about its mission and raise autism awareness. Catch up by reading our blog post on Collaboration, technology and making things.

• Parents Magazine “Wishes” Autism Speaks worked with Parents to develop a “wish” for autism that we would like to see come through within the next decade that will be featured in the October issue of the magazine. On September 15, Autism Speaks and Parents both posted the wish – that every child is screened early for autism – on their social networking sites and asked families to share their wish for autism.

• World Focus on Autism For the fourth year in a row Autism Speaks brought together more than 20 first spouses and esteemed dignitaries, including 15 ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event was held on September 20at The McCarton School in New York City. We encouraged those in attendance to support our international efforts, including Autism Speaks’ Light It Up Blue campaign in celebration of World Autism Awareness Day, and our Global Autism Public Health (GAPH) initiative. This annual breakfast event, supported by Mrs. Ban Soon-taek, wife of United Nations Secretary-General Ban Ki-moon, is part of Autism Speaks’ ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with autism. See an article highlighting the event published in the Wall Street Journal here.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

We are thrilled to announce that President Obama has signed legislation renewing the landmark Combating Autism Act for another three years, assuring continued federal support for critical autism research, services and treatment. Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his wife Gena with son Jasper, today joined the President at the White House for an official ceremony that sends a message of hope to the millions of families and individuals affected by autism.

The Combating Autism Reauthorization Act (CARA) — sponsored by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House of Representatives and Sen. Robert Menendez (D-NJ) and Sen. Mike Enzi (R-WY) in the Senate — would not have passed without the tireless efforts of advocates throughout the autism community. Across the nation, countless families and individuals united in a single voice and petitioned Washington to pass this vital legislation. Thanks to their efforts, the message was heard loud and clear: CARA passed unanimously in both the House and Senate despite an uncertain fiscal environment.

The new law continues the federal government’s commitment to autism research, services and treatment at current levels, authorizing $693 million over the next three years. The original act provided nearly $945 million over five years. Since its passage in 2006, significant advances have been made in determining potential causes for autism as well as promising new early intervention behavioral treatments. By signing CARA into law, President Obama has ensured the federal government’s commitment to autism so that crucial research can continue unimpeded for the next three years.

Autism Speaks salutes our lawmakers for listening, and responding, to the 1.5 million families across the nation who live with autism every day. To learn more about CARA, visit www.autismvotes.org/cara. To thank President Obama and your member of Congress and Senators for their support, please visit www.autismvotes.org/ThankPresidentObama.

Watch remarks by Autism Speaks Co-founders Suzanne and Bob Wright below.

I couldn’t be happier to share once again the news that we all had been waiting for…the Combating Autism Reauthorization Act is on its way to President Obama. Late Monday night, the U.S. Senate passed HR2005, the same bill that passed the House of Representatives last week.

For those who followed the chain of events during the past week, the band of four Senators who had placed a “hold” on the bill agreed to allow CARA to pass the Senate under the Unanimous Consent procedure. Their only condition was a request to the U.S. Government Accountability Office (GAO) to undertake an investigation on the federal funding of autism research, a request Autism Speaks has long supported to ensure our scarce federal research funds are spent wisely.

So now we have a law…well technically it becomes a law once President Obama signs it later this week!  $693 million in authorizations for autism research for the next three years.

Our success in the Senate this week and the House of Representatives last week was the result of a rare show of bipartisan leadership in today’s Congress. In the Senate, we thank our two original sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), along with the chairman of the Health, Education, Labor and Pensions Committee chairman, Sen. Tom Harkin (D-IA). Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) also earn our thanks by enabling our bill to move through a crowded agenda and on to the Senate floor for a final vote. In the House of Representatives, a team effort between Reps. Chris Smith (R-NJ), the prime sponsor of HR.2005, and Mike Doyle (D-PA) was assisted by House Majority Leader Eric Cantor (R-VA) who expedited consideration of the bill.

But this team effort extended well beyond the Beltway. The tens of thousands of Autism Speaks grassroots supporters and advocates across the United States who we called upon time and time again to make their voices heard played a central role in this success. A special thanks goes out to the entire Autism Speaks Field team for its incredible responsiveness and for rallying the troops from Maine to Florida, Texas to Minnesota and from Washington to the Tijuana border. Our grassroots efforts have never been better! And our thanks must also go to our partner organizations in this effort, the Autism Society of America, the Association of University Centers on Disabilities, the Consortium for Citizens with Disabilities, Easter Seals, the American Academy of Pediatrics, and the National Association of Councils on Developmental Disabilities.

The final enactment of CARA will be of enormous benefit to the autism research community that is making advancements on an almost daily basis. Because of CARA,  the research enterprise will be able to continue to grow, without interruption, to find the answers our community so desperately needs and deserves.

On behalf of the 3 million Americans who wake up every day with the challenges of autism, the professionals who work daily to care for them, the scientists who are dedicating their careers to finding the answers and all of those who are committing their lives to improve the futures for those living with autism, thank you!  Today is a better day because of what WE ACCOMPLISHED TOGETHER.

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!

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.

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.

As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)

Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.

Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.

Creating a New World

Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.

So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”

Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.

Securing Funding

One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.

Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.

The Transition Tool Kit

Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.

Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.

We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.

To read full article, please visit NJ Spotlight.

It didn’t come from me. I have to admit I could never pull it off like he does. It must be because he’s half-French (his mother’s half.)  Last Sunday, we had a cook-out with a family of friends at Fort Wilderness in Disney World.  My 8-year-old son Lucas was at it again. Smooth. It didn’t take him long to catch the eye of a college-age girl. He took her shoes off.  Before long he was riding around the campground in a golf cart with the other kids. She was driving; he was riding shot-gun. That’s my boy. The cutest little boy on the planet. Although he can say only a few words, I knew he couldn’t be happier.

Lucas has autism and some researchers find him interesting. A sample of Lucas’ DNA was tested by a commercial lab a few years ago for three autism suspect genes. Sequencing tests for the genes (CDKL5, Cntnap2 and Shank 3) were among the first to be performed. The results are what researchers find interesting — unusual variants or mutations in two of the genes-Shank3 and Cntnap2. These results also changed our lives — we left a world where things were increasingly desperate and entered a world of new found hope. Some now say Lucas may be one of the most researched children with autism in the country.

Like many parents, Marie and I spend a lot of effort trying to get the best for our child. Like many kids, Lucas’ day is filled with “activities,” although if he could speak well enough, I think he would call it “work.” He puts in a tough week – long hours of special education, speech therapy, occupational therapy, and applied behavioral therapy. But he also has some fun — “special kids” dance class on Saturday and some gym classes.

As I write this, skin cells from Lucas, Marie and me are being converted to Pluripotent stem cells at a laboratory at Stanford University. From these stem cells, the researchers will grow neuronal tissue. The research is aimed at developing drugs to improve the outcomes of many children.  Another study, a paper concerning a variant in Lucas’ Shank3 gene, has already been published.   We have been invited to join another study and there is other interest-full Exomic sequencing of autism suspect genes in Lucas.

Lucas has been to Boston Children’s Hospital-Harvard, Stanford University, Mt. Sinai Hospital in New York, and the Dan Marino Center in Miami. We have visited the Kennedy Krieger Center in Baltimore. Every time I see one of those “my kid made the honor roll at…” bumper stickers, I want to put a sticker on the back of my car listing all the places my kid has been to, followed by “so there!”

He’s my boy and I’m proud of him. Daddy knows; I tell him so when he gets real frustrated because he can’t speak. As hard as it is on Marie and me, it is incredibly difficult for him. We fear that this will not get any easier for him. What we know is that without effective research, it likely won’t.

Lucas can swim in our pool here in Orlando. He also loves his trampoline.  The “It’s a small world after all” ride at Disney World is now second on Lucas’ list of cool things to do. First is going to the beach -especially during a “Surfers for Autism” event. These are closely followed by long airplane flights and jumping on hotel beds. The last time we went for a weekend at the beach, he threw a fit when we left-he’d just as soon hang out there indefinitely. I know the feeling.

But it is another feeling that stays with me most days. It is the feeling that when the day comes when I leave this world, I will have not done enough to make the difference needed for Lucas.   This has got to be every parent’s worst nightmare — failing to be a good enough advocate. At 52, I already believe that I will never retire. I could spend my time fighting for insurance reform so that Marie and I wouldn’t have to come up with $25,000 to $35,000 each year for Lucas’ therapies and someday I could retire. Or I can spend more time doing what I can to advocate for the bigger agenda: finding effective therapeutics for children with autism.

So Marie and I pour over autism research. As part of the ongoing research concerning Shank 3 mutations, I am a proud member of the Phelan McDermid Syndrome (PMS) Research Support committee along with a group of very smart parents fighting with me to find help for our kids. Lucas does not have the deletion in chromosome 22 that causes PMS, but rather mutations in the Shank3 gene which researchers believe may cause autism.

I only wish that more parents would push for research into the dozens, if not hundreds, of autism suspect genes and the pathways that variants in these genes disrupt. I also have hopes. Hopes that more sequencing will be available and affordable in the near future. That Pluripotent stem cell, brain imaging and genetics research will answer many of the questions needed to move into effective drugs. And that research concerning speech, occupational and ABA and other psychological therapies yields improved outcomes for our children.

After watching a WWII movie last Memorial Day, I began pondering the notion of “the greatest generation.”  I also recently read The Immortal Life of Henrietta Lacks about He La cells and the Herculean effort our country undertook to beat polio. I believe it is this generation’s challenge to beat the developmental disability that is autism. We are on the cusp of major findings into the causes and potential treatments for autism. Trials are underway using experimental drugs to combat Fragile X and Rett syndromes. Research is implicating mutations in many of the same genes affected in other disorders with disrupted chromosomes, disorders in which classic autism exists- such as PMS. Common pathways are emerging in the literature. For a segment of the population, we now know what causes autism. The first studies concerning children and multiple autism suspect gene mutations have been published.

It matters. What we know, where we go, how we get there. That is the sentiment on the faces of parents we meet involved in research and support for their children on the spectrum. Parents who would move heaven and earth to help their kids.  A hope that comes with research.

The U.S. Senate Health, Education, Labor and Pensions (HELP) Committee has announced that it has rescheduled a hearing on the Combating Autism Reauthorization Act (CARA) for September 7. The meeting had been scheduled for this Wednesday Aug. 3, a date that unfortunately landed in the midst of the debt ceiling debate which has consumed Congress for much of the summer.

The HELP committee meeting is an important first step in renewing the historic 2006 law which guides the federal government’s response to the staggering rise in autism. Autism Speaks thanks everyone in our advocacy community for their hard work to date and urges you to be ready to resume the fight soon as we work to get this bill that is so essential to our families through Congress.

The CARA bill is sponsored in the Senate by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) To date, 22 other Senators and 53 House members have signed on as cosponsors.

Visit our CARA Action Center to find if your Senators and Congressmember are sponsors.

Since the original Combating Autism Act was approved in 2006 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.

If you are represented by one of the 22 U.S. Senators who serves on the HELP committee (see list of Senators here,) we need your help to make sure they attend Wednesday’s meeting.

Again, the committee 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 for his signature into law by September 30. Until the committee approves the bill, the full Senate will be unable to act.

Public welcome! Urge your senator to attend by clicking YES on this invite! Please know that if you live in one of the following states: AK, AZ, CO, CT, GA, IA, IL, KS, MD, MN, NC, NM, OR, PA, RI, TN, UT, VT, WA, OR WY – the rest of the autism community across the United States is counting on you.  One, or in the case of North Carolina – both, of your Senators is on the Health, Education, Labor and Pensions  (HELP) Committee.

YOU CAN TAKE ACTION HERE TO BE SURE THEY WILL ATTEND AND SUPPORT THE BILL!

RSVP to our Facebook event HERE

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.