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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.

Unraveling a Mystery in Nebraska

July 6, 2011 33 comments

The Combating Autism Reauthorization Act of 2011 would reauthorize the landmark Combating Autism Act (CAA) of 2006, securing the federal response to the national and public health emergency posed by autism spectrum disorders (ASDs.) Key components in the original landmark legislation will expire on September 30, threatening further federal support for critical research, services and treatment for ASDs. Families across the United States have shared how funding under the CAA has changed their lives and why it is so critical  to maintain a strong federal role in  research and treatment. Click here to learn more.

A conversation with Cynthia Schauss

Of the many enigmas that confront the autism community, understanding Phelan-McDermid Syndrome (PMS) has proven one of the most perplexing. In fact, just 600 cases have been identified, although the actual prevalence is believed to be far higher. PMS is caused by the absence of genes at the tip of the 22nd chromosome; the lack of the “Shank3 / ProSAP2” gene in particular is suspected as the primary cause of the symptoms associated with PMS.

Cynthia Schauss has come to learn about Phelan-McDermid Syndrome in raising her eight-year-old daughter Ashlyn in Bennington, NE, just outside of Omaha. Ashlyn’s developmental delays were not readily apparent, but her family knew she was struggling. Only because of improved genetic testing made possible through funding under the Combating Autism Act was the Schauss family able to obtain a PMS diagnosis for Ashlyn. This summer, Ashlyn will take part in stem cell research funded through CAA at Stanford University to broaden the knowledge about autism and Phelan-McDermid Syndrome.

We struggled for seven years to find out what was going on with our daughter. Doctors would tell us over and over again, “I have never seen a child quite like Ashlyn!” The medical field has not quite caught up with the diagnosis. We had to force the issue that something had to be wrong. It was important for us to get our doctors to understand that we wanted to do whatever we could to help our daughter.

The initial concerns for the Schauss family involved delayed speech and they began early intervention when Ashlyn was 2. At age 4, a psychiatrist recommended ADHD medications. An autism clinic reported Ashlyn was too social, although she did have other autistic characteristics. A genetic doctor believed Ashlyn had the most severe case of ADHD he had ever seen along with a possible case of dystonic cerebral palsy (CP.) An initial genetic test revealed no abnormalities.

We decided to redo genetic testing last June when Ashlyn was 7 and that test showed the partial Shank 3 deletion.  We credit advancements in the genetic micro-array to aiding in finding the deletion as her deletion is so incredibly small.

For us, it’s important to partner with the school system to aid in understanding how to work with Ashlyn in a school environment and how to understand her disability. Part of Ashlyn’s issue revolves around a receptive language disorder.  She is completely verbal, but has a hard time understanding what is expected of her.

As Ashlyn has aged, her traits of autism have become more obvious, as Cynthia related in a recent story written for the PMS Foundation:

At the age of 8, Ashlyn seems more like a 4-5 year old. Her delays are becoming more and more evident. She can’t ride a bike or participate in sports. She shuffles her feet when she walks. Her obsessive finger chewing and picking make her stick out like a sore thumb in a class of her 2nd grade peers. Reading, writing, and math seem like partially unobtainable goals.

After years of telling doctors and therapists that something was not right, we finally received a diagnosis. We’ve learned to cherish Ashlyn’s speech and verbal abilities. We love that she is mobile and that her motor impairments are somewhat mild.  We struggle to understand why she can talk and walk and other children with the same deletion are mostly non-verbal or immobile.  We hope that future research can shed some light on the diagnosing and understanding of PMS and autism.

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!

Autistic Individual Speaks to Senator Robert Menendez about Autism Reform

March 28, 2011 4 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

Kerry Magro and Senator Robert Menendez

I’ve had several surreal moments that have happened in my life. One of them happened last week when I got to spend the day at the Capitol in Washington DC speaking to New Jersey Senator Robert Menendez about several autism related topics. As someone on the spectrum, I have been advocating for Autism Rights for the past several years by sharing my experiences along with doing consulting work for families with individuals on the spectrum. This however was a new test for me as this was the first time I was speaking to a U.S. Senator. To say I was nervous would have been an understatement.

When I arrived to his office in Washington, Senator Menendez let me in with open arms. Senator Menendez   is considered by many people, “The Champion of Autism” because of his close work with Autism Reform in regards to his recent sponsorship of the Combating Autism Reauthorization Act (CARA), he helped establish in December of last year, with former Connecticut Senator Christopher Dodd. Overall, he came over as warm and very caring about the needs of awareness of autism in not only New Jersey, but throughout the United States. I was very impressed as at the end of our conversation he was able to quote a majority of one of my recent blogs I did for Autism Speaks found here.

Some of the main discussion items we discussed were:

  • The Light it Up Blue Campaign-> Autism Speaks is currently doing a campaign to try and encourage The White House to be lit up blue for April 1st and 2nd in celebration of World Autism Awareness Day. We discussed this item and also how we can get prominent buildings in New Jersey lit up blue (we are still on talks about this item).
  • New Autism Reform Acts-> when we can expect a new Reauthorization Act (such as CARA) and what will it look like.
  • What impact will the financial constraints being felt around the country have on full funding of (CARA), and the importance of  hearing from the Autism community to have Congress make it a priority
  • How can Autistic individuals get more involved in Autism Related Topics (Groups such as Advancing Futures for Adults with Autism)?

The main goal for me from this meeting was to just get the opportunity to start a dialogue. As most of us are aware, a great deal of Autism litigation and reform is a tedious process. One thing that Senator Menendez mentioned which I found very interesting was, “It’s difficult sometimes to spread awareness of Autism and get funds pushed towards Autism when many individuals on the spectrum can’t relay the importance of why it’s needed”. We both understood how unfortunately even though this may not be fair it’s a reality. That’s why hearing from other autistic individuals, especially those that are verbal becomes vital because even though some people can see how some with autism act  and behave, it’s something entirely different to understand what they are experiencing and feeling on the inside.

This was a bit of an eye opener as it makes me understand the importance of continuing to get the word out and understand that Autism needs to speak sometimes in order to make people aware of  its need. I would like to thank Senator Menendez officially on this blog for giving me the opportunity to speak to him as it has made me better  advance my understanding of The Disability Movement going on right now and what I can do to self-advocate.

I hope the journey to Washington was the first of many and that I will be able to continue the dialog with Senator Menendez in the months and years to come.  What an amazing individual!

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