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

October 12, 2011 3 comments

By Stuart Spielman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Countdown to CARA: Step One on Sept. 7

August 31, 2011 1 comment

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

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

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

Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.

The CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.

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

Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing CARA.

Autism Votes 100,000 Advocates Strong

July 21, 2011 12 comments

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 Journey to Insurance Reform: Next Stop Albany

May 25, 2011 4 comments

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

On a gray, drizzly Tuesday, I rode an Amtrak train from New York City up to Albany to meet with parents and legislators who want to bring autism insurance reform to the Empire State. As the tracks skirted the Hudson River, I thought how much my son Liam, who has autism, would enjoy this trip. Staring at the view rushing by. Checking out the snack car. Asking a million questions of the conductor or people who just want to listen to their iPods.

Then I wonder why they are going to Albany.

Is what they are doing in the Capitol today just as important to them as this is to me?

It took trains, planes and automobiles to make this day happen…and luckily, so far, no boats. Back home the Mississippi River in my hometown of Baton Rouge was cresting. Families west of me flooded by opened valves in the Morganza spillway. I looked at the Hudson a little differently on this trip – watching it flow along, unobstructed, to the Atlantic Ocean – mighty and unstoppable. Rivers respond directly to their environment generally maintaining their course but occasionally overflowing their banks and destroying everything in their path.

Passage of reform in New York State  is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.

For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.

I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.

I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.

The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.

This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.

Everyone is busy but we hear time and time again from every nook and cranny around the United States that face to face meetings with legislators are the most effective thing you can do for change. Every day the insurance industry has lobbyists who stroll the halls in Albany working against your kids in New York. If you want this bill, with the language the way it is now, you will have to stroll the halls or meet with your legislators when they are back in the district.

After riding on that train on Tuesday, I realize firsthand how hard it is to physically get to Albany. But I also learned that close to 1.5 Million people live in the Albany metro region. To those families, I am calling on you personally to do what you can to get down to the Capitol more regularly during the session. Meet with legislators and their staff. Please be our ground forces for families like yours who live 5, 6, 8 hours away on the other side of the state.

For the rest of New York, you are not off the hook! If you want this I hope over the next month you are prepared to make countless phone calls to support them. Make sure you are registered at www.autismvotes.org!

Everyone gets nervous talking to politicians but don’t worry. If you have never done this before, we will teach you what you need to say and how to do this. We just need to know who is willing to commit to working this bill in the halls of the Capitol over the next six weeks.

If you live in Albany and want to become part of our ground force operations, please email me at Advocacy@autismspeaks.org.

Thank You Governor Brewer – You Heard Us Speak

April 29, 2011 28 comments

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!


What’s All the “Brewer-Ha-Ha” about Arizona?

April 28, 2011 17 comments

It’s on the other side of a country three time zones away from you.  You have never been there. You don’t know anyone who lives there.  You have enough on your plate with your own family and your child’s needs.

Why should you care about what is happening in the state of Arizona?

Arizona became the fourth state to enact autism insurance reform legislation in the spring of 2008. In 2011, their legislature became the first state to pass a bill that would effectively reverse the progress made three years ago. That legislation now sits on Governor Brewer’s desk awaiting its fate – to become law or to get her veto stamp.

On its face, this new legislation appears harmless and expansive of our free enterprise, capitalist society.  Let the interstate commerce trading of insurance policies begin under the premise of increased competition in the market to allow for reduced health care costs!  But at what price?  If SB 1593 is signed into law by Governor Jan Brewer, it will allow companies to shop outside the great state of Arizona – perhaps in states where autism insurance reform has not passed – potentially leaving families alone holding the bag once again for their exorbitant children’s health care costs which can quickly and easily be upwards of $75,000 each year.

Just watch the evening news any given week and you can see that Arizona politics these days are writhe with state’s rights and state pride.  “Don’t tell us what to do. We are Arizona.”  That said, how is it possible that Arizona legislators would then choose to hand over regulatory authority of healthcare coverage for their constituency to say…Rhode Island?  If SB 1593 is signed into law, policies will be purchased across state lines, or even across the country. Citizens will have no recourse – subject to the whims of the other state’s legislature, regulation committees and judicial system.  They will have no representation at all.

Last week, Autism Speaks launched an aggressive campaign asking Governor Brewer to veto the bill.  Members of our Government Relations team met with her office.  We purchased television air time for commercials. We sent eblasts to rally the Arizona community.

This week we are asking people all across America to pitch in with the heavy lifting.  We need it. 

There is a company generating robocalls to call for Governor Brewer’s signature into law.  And their ever efficient robodialer is delivering calls to Governor Brewer’s office at a higher rate than our community – a community exhausted from fighting our fight at every turn.

Help us prove that our grassroots advocates are better than robots.

This is simply a domino that we cannot afford to let fall.  A victory for the opposition would bolster  resolve to introduce similar legislation in every state where reform initiatives have passed.

Who cares about Arizona politics? You should. Your insurance coverage, or your hope of obtaining it, is now in great jeopardy. As a community we must stand strong. We must come to Arizona’s aid.  We must politely ask Governor Brewer to do the right thing – to veto SB 1593 and preserve the accomplishments of Steven’s Law.

Regardless of what state you live in, please call Governor Brewer’s office at 602.542.4331. Press #4 for a live person. Say “I am calling to ask Governor Brewer to veto SB 1593.” Tell your friends. Post it on your Facebook. Send it out through Twitter.  Ask for accountability from your friends and family. Ask them to demonstrate publically that they have completed the mission by writing “DONE” below your post.

Nothing in life is ever easy. To preserve progress, we must be ever vigilant.

To learn more about what is happening in Arizona or to learn how you can become more involved in federal and state initiatives, please visit www.autismvotes.org and sign up today!

Halfway There: A Personal Reflection on Autism Insurance Reform

April 20, 2011 37 comments

This is a guest post by Lorri Unumb, the Senior Policy Advisor and Counsel with Autism Speaks.  She teaches a class called “Autism and the Law” at George Washington University Law School and, along with her husband Dan, is the author of a newly-published book by the same name.

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Today, as I sit at my kitchen table reading news accounts of the 25th state autism insurance bill being signed into law by the governor of West Virginia, I get emotional.  Six years ago this summer, I sat down at this same kitchen table to write my own bill.  The mother of a then-4-year-old son with autism, I was frustrated that health insurance wouldn’t pay for the treatments my son’s doctor recommended.  I was tired of reading EOBs that deemed my son’s treatment “experimental.”  Or “educational.”  Or “non-restorative.” And mostly, I was tired of sitting in support groups with parents who, without coverage from their insurance, could not provide treatment to their children at all.

I wrote a very simple bill – one page of common sense — that said not much more than “health insurance must cover what a doctor prescribes to treat autism.”  As a lawyer and law professor at the time, I could not think of any reason why health insurance should not cover our children’s health condition.

I sent my one-page bill to a couple of legislators in South Carolina and asked them to file it in the fall of 2005. The insurers came out swinging against it, as did the Chamber of Commerce and the National Federation of Independent Businesses.   But I had assembled a strong group of committed South Carolina families – the “Ryan’s Law Grassroots Gang” – who had compelling stories to tell and were willing to share them.

For two years we fought and negotiated and persevered.  We contacted legislators one by one and asked for 15 minutes to explain our situation.  We had no lobbyist, no money, and no organizational backing.  Our opponents had multiple lobbyists, deep pockets, and their own parking spaces at the state capitol.

In the end, the legislators in South Carolina did the right thing.  They passed our little autism insurance bill – twice.  They passed it first in the usual course of proceedings and a second time – unanimously – on the last day of the session – June 7, 2007 — after the governor of South Carolina vetoed it.

The law became known as Ryan’s Law, after my son.

In the minutes after Ryan’s Law passed, I stood in the lobby of the state house exchanging hugs, kisses, and tears with families, legislators, and staffers who had become friends in this journey.  When the hugging was done, my two best autism pals and I went to a Mexican restaurant, toasted each other with margaritas, and drove home.  The celebration was over, and we went back to our real lives.

At the time, I had no idea that our effort in South Carolina would attract national attention and would lead to hundreds of emails from families who wanted to pass the same law in their states.  In spite of the standing ovation from our House of Representatives at the moment of final passage, notwithstanding the legislators who shook my hand and thanked me for giving them the opportunity to support the “most important bill we’ve ever passed” – I had no appreciation for the significance of the occasion.

Ryan is now 10.  In the years since Ryan’s Law passed, I have had the good fortune to help families across the country advocate for similar autism insurance bills.  In 2008, I was invited to join Autism Speaks and, because of their tremendous support, have been able, along with the other dedicated members of the Government Relations team, to develop the expertise needed to take on opponents of autism insurance reform in almost every state across America.

Last year I flew approximately 150,000 miles as part of Autism Speaks’ effort to assist local autism advocates in their efforts.  As I reflect on my travels and the 50+ times I have testified in support of autism insurance legislation, what stands out most are the phenomenal families who have stepped out of their comfort zones and engaged in the political process.  What stands out are their stories:

  • The mom who compared the journeys of her two young children – one who had cancer and could get the treatment his doctor recommended, and the other who had autism and could not.
  • The dad who was forced into bankruptcy and lost his home because he wanted to provide his son needed therapy.
  • The teenager with autism who had overcome his deficits enough to testify beautifully before a legislative committee and thank his parents for the sacrifices they made so that he could receive therapy.
  • The parents who had two children with autism but had to choose which one would get therapy because, paying out-of-pocket, they could afford only one.

I cherish memories of the families who never believed their voice could make a difference but now have seen the law change because of their efforts.  And I applaud the legislators who have championed our cause only because they knew it was the right thing to do.

At a time when many criticize our government and political system, I am encouraged by the success of our grassroots activism.  To me, the autism insurance reform movement is a shining example of democracy at its finest.

Although we have now reached the halfway point, we have a long way to go.  Indeed, we have more than “halfway” remaining, because, even in the 25 states that have passed autism insurance laws, many families are still not able to access coverage.  Insurers put up roadblocks – roadblocks that will require significant enforcement efforts and legal action to overcome.  Many families are insured by self-funded companies that are not subject to their state’s autism insurance laws.  (We were one of those families by the way, and, as a result, Ryan was not covered by Ryan’s Law when it passed!)

Nevertheless, today I pause for a moment to celebrate with the many families I’ve been privileged to meet and with my Autism Speaks colleagues – both my 6 Government Relations colleagues and the many others who raise funds to make our work possible and raise awareness to make our work easier.  As I reflect on 25 journeys in 25 states that now require insurance to cover diagnosis and treatment of autism, I am reminded of the line I wrote to the Ryan’s Law Grassroots Gang on the day the South Carolina bill became law:  “Although I obviously wish my son Ryan were not struggling with autism, I am today very grateful and honored to be part of this autism community.”


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