Autism Speaks Official Blog

By Stuart Spielman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A message from Lou:

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

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

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

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

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

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

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

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

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

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

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

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

Tune in to PBS’s “Need to Know” for a segment on the challenges facing adults with autism and their families, as well as the desperate need for services that will help them live productive and fulfilling lives. The segment will feature an interview with Autism Speaks Executive Vice President for Programs and Services Peter Bell, who discusses the ongoing needs of adults with autism and the call for Congress to renew the vital Combating Autism Act (CAA). Due for reauthorization on September 30, the 2006 CAA represents the federal government’s commitment to support autism research, services and treatment. To learn more, visit www.autismvotes.org.

“Need to Know” will air on the following major PBS stations this weekend. This list is not comprehensive, so please check your local PBS schedule for a date and time near you.

WGBH-TV Boston: Friday, July 29 – 10:00 p.m. EDT

WTTW-TV Chicago: Sunday, July 31 – 9:00 a.m. CDT

KERA-TV Dallas-Fort Worth: Saturday, July 30 – 8:00 p.m. CDT

WNET-TV New York: Friday, July 29 – 8:30 p.m. EDT

WHYY-TV Philadelphia: Friday, July 29 – 9:00 p.m. EDT

KQED-TV San Francisco: Friday, July 29 – 10:00 p.m. PDT

WETA-TV Washington, DC: Friday, July 29 – 10:30 p.m. EDT

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

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

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

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

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

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

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

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

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

It was four summers ago that Autism Speaks recruited me to help build a network of autism advocates across the United States, an assignment that recalled my earlier days growing up in the South where summertime activities always included gardening. My parents planted their garden in the spring while my grandmother had a large garden year round at her home in Alabama.

Productive gardening takes diligence – Preparing the ground by tilling and fertilizing the soil. Plowing rows. Placing stakes and strings to support tomatoes and string beans. Planting the seeds or seedlings. And putting up scarecrows. The garden must be watered daily, soil nutrition levels maintained and yes, weeds must be pulled.

As kids, my brothers and I would grow so impatient after planting the seeds. Why did it take so long to notice any change? We would run out every morning to see if anything had popped through the soil or if a flower had formed. Did we see any sign of a fruit or vegetable on the plant? No,just dirt.

But magic was happening below the soil’s surface.

Our mother and grandmother would hand us a bag and instruct us to start pulling the weeds before they got out of hand. Sometimes it was difficult to tell the difference between a weed and a seedling. Sometimes we made mistakes. We rolled up our sleeves for this boring, hot chore, but learned that in order to have a vibrant garden, patience was a prerequisite.

Wait. Wait. Wait.    Weed. Weed. Weed.

Somewhere around mid-summer the plants would take off!  Delicious vegetables would start coming in – different plants at different times – but just as our mom and grandmother advised us year after year, our patience and care paid off. Our garden was practically bursting!

As the Director of Grassroots Development for Autism Speaks, I have worked with colleagues and volunteers to carefully prepare, till and fertilize the soil for autism advocacy, to plant seeds of change in communities nationwide, to nourish budding plants of reform and from time to time, roll up my sleeves and pull out weeds. All the while, teaching each new gardener, one at a time, how to get to work on tedious, boring tasks while keeping focused on the dream of a beautiful harvest.

This summer, our effort blossomed – we are now 100,000 gardeners strong.  100,000 advocates affiliated with the autism community planted in every state, in communities large and small. These gardeners are dedicated – determined to make a difference for all people with autism, children and adults alike, on a myriad of issues from health insurance coverage, to securing federal research funding, to educational reform and services.

Over the last three years, our community has harvested a total of 25 states that have enacted autism insurance reform and the gardeners there continue to work hard to maintain their patch through implementation. We have planted seeds and are nurturing seedlings in the remaining states to end autism insurance discrimination. We have secured an additional $125M in research funding through the American Recovery and Restoration Act. And we inserted four very important words – “including behavioral health treatment” – into the Patient Protection and Affordability Care Act to cover applied behavior analysis therapy in the essential benefits package for those eligible for health insurance coverage under this law. We are hard at work to maintain the plants that fund autism research and treatment networks by fighting for the Combating Autism Reauthorization Act.

Sometimes, the plants of our garden are on different rows. These different plants produce different fruit and each plant requires different soil conditions and care. But the fruit of each plant is essential to a balanced diet of change within the autism community. We cannot let any of them wither on the vine.

In the end, I learned life lessons from my mother and grandmother’s teachings.  I may have one big black thumb when it comes to raising a real garden of my own, but I love to plant, grow and nurture people and will help you become a strong, healthy advocate for change.

If you want to learn how to roll up your sleeves and make a difference in a community garden, please join our Autism Votes program at www.autismvotes.org. We provide you with easy steps to participate so you can obtain health insurance coverage, federal funding for autism research,  secure tax deferred savings plans for your child’s adult needs,  services for people with autism and education system improvements. If you are interested in becoming a gardener or district leader in your area, please email us at advocacy@autismspeaks.org .

The landmark Combating Autism Act (CAA), signed into law by President George W. Bush in 2006, gave all of us in the autism community a foundation on which to build. But key provisions in the law are scheduled to sunset September 30. Unless Congress acts quickly to renew the law, the funding we need to continue vital research will vanish. The progress we have made over the past five years will grind to a halt. There simply is no more important or immediate issue for us today at the national level.

Autism impacts not just the people with the disorder themselves, but their immediate families as well as taxpayers who will have to pay higher taxes to care for people with autism if treatments and therapies are not developed to help them live independent lives. Fortunately, bills have just been introduced in both houses of Congress – the Combating Autism Reauthorization Act of 2011 (CARA) – to continue the momentum we have built since 2006. These bills have the support of both political parties, a rarity in Washington these days, but need the support of the entire autism community. The original 2006 act passed Congress with near unanimous support – it is time again to make sure your voice is heard with your Senators and Congressmen. Sign up to receive alerts from Autism Votes.

Why was CAA so important? For the first time, the U.S. government recognized the specific impact autism spectrum disorder (ASD) has on a significantly large portion of the American population. Nearly $1 billion in federal investment was authorized for biomedical and treatment research for autism. The law also required the development of a comprehensive, strategic plan requiring all federal agencies that have anything to do with autism, whether in health, education, or social services, to coordinate their efforts and, for the first time, communicate with each other through the Interagency Autism Coordinating Committee (IACC). This is important because it is easy for each agency to work in isolation without ever realizing how their work or study could impact another agency’s efforts.

One billion dollars is an extraordinary amount of money. But the fact that one in 110 children, including one in every 70 boys, is now diagnosed with an ASD is also extraordinary, an alarming testament to the growing crisis of autism in the U.S. It is easy to understand why our community is coming back to Congress to reauthorize this legislation for vital research. The newly introduced CARA bills would continue federal funding at current levels for another three years. The need for even more funding is obvious; but the concerns within Congress over the size of the federal deficit must be respected if we are to move forward.

The CAA has given us the foundation on which to continue to build. Some of the bricks in that foundation include:

• Development of standards of care for medical and behavioral health, clinician guidelines and training
• New treatments for commonly associated medical conditions, such as sleep and gastrointestinal disorders
• Improved methods for autism screening and recommendation for universal screenings at well baby check-ups
• Development of effective early intervention methods for toddlers
• Detailed surveillance by the federal Centers for Disease Control and Prevention (CDC) of the increasing prevalence of ASD
• Identification of several autism susceptibility genes leading to drug discovery and earlier detection in infants at risk for ASD

And what do we lose if CAA is not renewed?

• A requirement holding the federal government accountable for its efforts to improve the lives of persons with ASDs through research
• Two intervention networks – physical and behavioral health – that support the development of clinical care practice guidelines, clinical training and research on effective treatments
• Augmented support for the University Centers of Excellence in Developmental Disability (UCEDD) to promote training and dissemination of best practices in ASD screening, diagnosis and treatment
• The mandate requiring that a strategic plan for autism be updated annually
• A shutdown of the IACC – the special team that has come together to share any and every advance that has emerged to help combat autism

One day, we will put a roof on autism – find the causes, effective treatments and, ultimately, answers for all those seeking a cure.

In the coming months we will need your help to contact your United States Members of Congress, both in the House and the Senate. Please sign up to receive alerts from Autism Votes. We make it easy for everyone to get involved. To speak your mind. To tell legislators what you want. To make Congress listen.

This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.

If you were planning to call Governor Brewer again today to ask her to veto SB 1593 – HOLD ON!  THINGS ARE DIFFERENT TODAY! WE HAVE A NEW MESSAGE BECAUSE YOU DID IT AUTISM COMMUNITY! SHE GAVE SB 1593 A BIG VETO STAMP!

We are thrilled to report that late yesterday afternoon Governor Jan Brewer of Arizona officially vetoed SB 1593, a bill which if enacted would have effectively reversed the accomplishments achieved under Steven’s Law – Arizona’s autism insurance reform.  The autism community in Arizona, and all across the country, laser focused their efforts contacting Governor Brewer – speaking with ONE loud united voice.

You can read a copy of her veto message here:

“My mother always taught me that when someone does something nice for you, you thank them. For something as important to our community as this, I hope that each and every one who participated in this campaign – whether you made a call or sent an email or whatever — will take the time now to thank her profusely.  Thank her profusely and publicly – through your favorite social media outlet – and get your friends and family to thank her, too!

So, speaking of social media outlets, we are collecting messages for her on this blog below and on our Facebook pages for Autism Votes, Autism Speaks-Arizona and Autism Speaks-National.  We want her to see, in public, how grateful we are that she listened to all of you. Please thank her by leaving a message for her below, then write a quick thank you note on one of our Facebook pages.  If you would like to send her a more personal email thanking her and telling her how much this means to you and your family, you can visit our Arizona page on the Autism Votes website and take action there.

Her veto also sends a strong message to our community.  For one thing, look what we can do when we focus our efforts. We are not weak and helpless. We can move mountains.  We can change things. But we have to be diligent and persevere.

Winston Churchill once said, “Sure I am this day we are masters of our fate, that the task which has been set before us is not above our strength; that its pangs and toils are not beyond our endurance. As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us.”

What a smart man. 

Sometimes in our community with all the battles we have to fight on a daily basis we just feel so incredibly helpless but no truer words were ever spoken.  We are, in fact, masters of our own fate. The important word to me in this statement is “we,” not “I,” “we.” 

WE are a team. WE are all in this community together. WE cannot sit here wringing our hands and whining. WE have to ACT! And when WE do, things change.

Look what changed as a result of your action everyone! Governor Brewer heard you loud and clear over the noise of our opposition. And believe me, they were giving it everything they had to get her to sign it.

The defeat of SB 1593 in Arizona is no small thing.  So thank Governor Brewer, then pat yourselves on the back for a job well done.

To get involved in the Autism Votes program, like our Autism Votes Facebook Page and visit www.autismvotes.org to sign up today!

Earlene Sharp Anglin is a part-time geography instructor at Marshall University in Huntington, W.V. who also volunteers with various local autism organizations and mentors parents of newly diagnosed children. Having a 9 year old son with autism, she understands the difficulty of affording the medically necessary treatments required of this diagnosis. As Autism Speaks’ West Virginia State Advocacy Chair, Earlene played a key role ensuring passage of House Bill 2693, requiring insurance companies to cover the treatment of autism.

Earlene Sharp Anglin, Grayson Anglin, Senator Evan Jenkins

On April 1, 2011 West Virginia made history becoming the 25th state in the nation to enact autism insurance legislation. Being a key advocate throughout the legislative process allowed me to witness first-hand the dynamics which would come together and ultimately make this law a realization for West Virginia families.
The very fact that families have to fight for insurance coverage is maddening.

It was difficult for many of our families to get past this but you must remove anger from the equation in order to be productive. One key element of success in West Virginia was the formation of a cohesive, core group of advocates both in the Capitol and throughout every corner of the state. Consisting of parents, providers, and a diagnostician, this group of volunteers vowed to have “one voice” prior to the session’s commencement and to carry this legislation to a successful outcome.

We never took our eyes off the goal – to end autism insurance discrimination for our children.
Decisions were made through a series of meetings and conference calls – sometimes late at night or early in the morning. Daily updates were communicated to the core group of advocates all day long – thank goodness for cell phones, email, and texting. The Autism Votes Advocacy Program and social media blended together to update and mobilize other interested parties throughout the state.

Positive persistence was a constant for all involved.

Another crucial element of our success was “finding our champion” ~ someone within the legislature to herald our cause. When you find yours, developing an open, honest and respectable relationship with these key legislators is vital. In most states, including West Virginia, there are legislators whose lives have been affected by autism. However, our champion in the West Virginia State Senate, Senator Evan Jenkins, is not directly affected by autism. Nonetheless, he proved to be a credible, respected, and admired pillar of strength and determination for those in the autism community. He escorted HB 2693 through the Senate with a calm, steady hand and was remarkable in his ability to effectively communicate the historical significance of this bill for countless West Virginia families. Equally as important, he kept an open line of communication with key advocates providing status updates and invaluable political insight. His dedication to our cause was unwavering. I am proud to be his constituent.

As the autism insurance reform legislation train rolls on, I would urge future advocates in other states who climb aboard to take some time and get to know as many of your states’ representatives as possible – personally. Your strongest supporters may not always be the most obvious. It is important to make the effort to find a true champion, or two, within your state who is willing to catapult autism into the spotlight and then guide you through the abstruse process.

Finally, Autism Speaks through their Autism Votes program afforded West Virginia families professional testimony, guidance, and advocate expertise from a national perspective. The formidable work of the Government Relations/Advocacy Teams helped pave the way for a successful outcome. All this time I thought money raised at Autism Speaks went only for medical research and awareness projects, but I learned how invaluable an investment in their Government Relations department can be. Members of the Government Relations department came to West Virginia to testify and to share the knowledge and experience of having been involved in the legislative process in numerous other states. Their advocacy website proved to be an invaluable tool and they answered our calls and emails, day or night. West Virginia families did not have to pay for any of this. This was a great service to the autism community as a whole in our state.

Unified advocates, unwavering champions, and unrivaled experience are without question necessary requirements for successful passage of autism insurance legislation. Had any of these three elements been missing from the equation here, the outcome could have very well been quite different.

Ultimately, HB 2693 passed both the House and Senate unanimously and Governor Earl Ray Tomblin signed the bill into a law which will go into effect on July 1, 2011. This “World Autism Awareness Day”, and indeed all during Autism Awareness Month, West Virginian’s should embrace this moment and celebrate our legislators’ achievements.

This is a guest post by Dianna Varady, the Statewide Advocacy Chair for Autism Votes.

On March 4^th, 2011, Governor Mike Beebe signed Arkansas HB 1315, “AN ACT TO PROVIDE INSURANCE COVERAGE FOR AUTISM SPECTRUM DISORDERS” into law. Just like that our bill became Arkansas Act 196 of 2011.  A friend of mine from another state posted on my Facebook page, “Wow, you made that look easy!”  which sent me into a fit of hysterical laughter.

We began this journey in 2007, when my son was three years old with just a handful of moms and dads trying to do our best for our children.  It’s a no-brainer, right?  Who on Earth would believe that insurance should NOT cover treatment for children with autism?  As it turned out, a surprising number of people did but we were not surprised to learn that most of them worked for the Insurance industry – twenty-five lobbyists representing one private insurance company alone!  As soon as our bill showed signs of viability, the industry assigned every available lobbyist to defeat our bill – then hired a few more for good measure.

Fortunately in this case, parents of kids on the spectrum can be stubborn.  We marched down to the Capitol every year for four years. We quickly learned that our tiny group of parents couldn’t get the job done alone.

In 2009, Autism Speaks through their Autism Votes Program, offered to support our effort. With their assistance we built a solid grassroots base.  Soon families from all over Arkansas were organized under a structure of Advocacy Chairs in each region of the state who prepared and motivated our volunteers.

Late in 2010, we met with our legislative champions, Representative Uvalde Lindsey and Senator Maryanne Salmon, to develop the policy for the 2011 Session.  I’ll never forget the email Representative Lindsey on February 3rd when he filed HB 1315.  There was nothing in the body of the email, just four words in the subject line said, “Let the fight begin.”

Indeed, the fight was on.

For someone like me – unfamiliar with politics outside of this effort – it felt like an epic battle.  The opposition was mighty – their efficacy stunning.  Many legislators who initially appeared supportive of HB 1315 began to switch sides in a bizarre game of “keep away” where the insurance lobbyists tossed balls of confusion to every possible governmental entity.  They  advised legislators to seek funding for these treatments through Medicaid, Department of Human Services, or the Department of Education deflecting their responsibility to reimburse their policy holders for evidence-based treatments – and they were succeeding.

Keeping the conversation focused on the merits of our bill was like whack a mole.  Every time we got one thing under control another issue popped up.  So we rallied the grassroots troops we had worked so hard to grow and added a lobbyist to our team to keep constant vigil at the Capitol – alerting us to the first sign of trouble.

This 3-part team – grassroots, legislative champions, & lobbyists – finally put us over the top.  I firmly believe that each component was equally vital for our success.  Without one of them, we probably would have failed.    If we were losing ground at the Capitol or if a particular legislator was mounting an offensive against us, our lobbyist would sound the alarm then we would send an alert around the state to start burning-up the phones at the Capitol.  I have to confess that, while I’m proud of our success in passing the bill, I’m more proud of how this community united to make this a reality.

As it happened, it gave our legislators something to be proud of, too.  When HB 1315 went to the House floor, I was surprised by a legislator we had never even spoken to who rose to speak in favor of the bill.  He made an impassioned plea for his fellow House members to join him in voting YES. After the vote I went downstairs to introduce myself and to thank him.  This was a man who had no stake whatsoever in this fight. He knew no one with autism.  After I thanked him, his eyes misted up a bit and he said to me, “I only wish I had remembered to say what I went up there to say in the first place, which is that I believe this is the most important vote I’ll cast.”  I’ll cherish that memory forever.

So for those who have yet to pass a law, how does it feel to finally cross the finish line?  Relieved. Happy. Elated. Tearful. But most of all – PROUD.  Proud of Representative Lindsey and Senator Salmon who believed in us and fought so hard and long for our children.   Proud  of every legislator who supported us all the way through despite intense pressure from some very powerful and  influential people.  Proud of legislators who may have wavered at some point but did the right thing when it came time to cast their vote.

Most of all, I’m so proud of every single person in every corner of Arkansas who answered our calls to action flooding Capitol with phone calls, faxes, and emails.  It was proof positive that when the community comes together in a focused effort, amazing things can happen.  After four years of effort , with a unified, focused community, Act 196 took only a record 29 days from the day it was filed until the day it was signed into law.

The change of the calendar year marks another pivotal step forward in the effort to pass meaningful autism insurance reform nationwide, as several state autism insurance laws go into effect on January 1, 2011.

The states that will begin requiring certain state-regulated health insurance plans to cover the screening, diagnosis and treatment of autism spectrum disorder effective January 1, 2011 include:

Iowa

Kansas

Maine

Massachusetts

Missouri

Nevada

New Hampshire

Some state autism insurance reform laws actually became effective earlier in 2010, but because the majority of health plans operate on a calendar year basis, the true impact of these laws will occur when the new plan years turn over on January 1, 2011.  These states include:

Kentucky

New Jersey

In addition, Vermont’s autism insurance reform legislation will become effective July 1, 2011.

If you live in one of the newly effective states or work for a company that is headquartered in one of them, you could potentially benefit from the legislation. You can find details and helpful links related to the specifics of your state’s autism insurance law by visiting Autism Votes’ State Initiatives page and then clicking your state on the provided interactive map. This information will continue to be updated as it becomes available in the various states.

In addition, it is important to check with your employer’s human resources department to determine whether your health plan is subject to state law.  Some employers chose to self-insure, and are thus not subject to state law, but rather ERISA, a federal law.  If this is the case, please visit the Autism Votes resource page for self-insured plans.  Many self-insured companies are choosing to voluntarily comply with state autism insurance laws once they are made aware of them.

With twenty-three states now requiring health insurance to cover autism treatment, the momentum of this national trend is undeniable.  It is our hope at Autism Speaks that the remaining states pass meaningful autism insurance reform as quickly as possible, and that the states with laws on the books properly implement and enforce them so that families dealing with the challenges of autism at long last have the coverage they need.

NBC Nightly News featured Autism Speaks and new insurance policy laws being passed in 2011.