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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.”


TV AD Blitz Calling on Governor Brewer to Veto Misguided Arizona Legislation to Repeal Autism Insurance Law

April 19, 2011 9 comments

Autism Speaks has announced a major, intensive two-day TV ad campaign, running April 19-20, that will call on Governor Jan Brewer to veto a misguided bill that would repeal enacted autism insurance reform legislation and force hundreds of Arizona families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments –– even though they already have health insurance coverage.

“Neighbors,” will run nearly 200 times over two days on Phoenix’s network TV affiliate stations – KNXV-TV (ABC), KPHO-TV (CBS), KSAZ-TV (FOX) and KPNX-TV (NBC). The ads juxtapose two families who have a child with autism – one of whom is getting the treatments he needs because his parents’ insurance company covers his therapies, and another who isn’t because his insurer is not required to provide coverage. The ad calls on viewers to call Governor Brewer and urge her to veto the bill.

For more information, please visit Autism Votes

And We’re Off!

January 13, 2011 7 comments

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.


It’s easy to tell the first Monday back after the New Year in the Government Relations department at Autism Speaks.  It’s full of sparks as rockets start taking off in every possible angle in the race to introduce autism insurance reform legislation in the states.  States spend all fall hammering out policy details, knitting coalitions and growing their grassroots advocates and then BANG! It’s off to the races. This mad pace continues throughout the first half of the year in the scramble to see whose states will achieve the objective this spring legislative session.

Earlier this week, Oregon entered the fray as the first state of 2011 to introduce autism insurance reform legislation with both a House and Senate version of the bill.  Oregon has a legislative session that only meets during odd years.  The team of volunteers in 2009 worked very hard but we just didn’t reach this objective.  We know more now. We are armed with more data and more states have enacted legislation. Oregon’s volunteer leaders have spent time cultivating that fresh ground and sowing the seeds necessary for success.

Their time is now.

When you look at our map of the United States you see a swath of green across the nation utilized to signify the 23 states that have passed this legislation in the heartland, along the Gulf Coast and up the Eastern Seabord. But the west coast has remained unphased.  All children with autism need appropriate health care coverage.

How is it possible that our nation has an entire coast where no coverage exists for our children to access the treatment and therapy they need?

2011 is the year to resolve that injustice. And Oregon Autism Advocates, I hope you will get involved and change your children’s destinies.

Martin Luther King, Jr. once said, “Change does not roll in on the wheels of inevitability, but comes through continuous struggle.”

With Martin Luther King, Jr. day approaching on Monday, if you live in a state that has not yet turned green, listen to his words and let that motivate you. Do not give up.  Do not sit quietly and depend on others to do this hard work for you. Roll up your sleeves, get busy and get it done. It is worth the struggle.

Yesterday, I spoke with a parent from a state whose law was recently implemented.  Their child is severely affected by autism – and is a teenager.  Their family had lost hope.  With the advent of the child’s new ABA therapy program, because they have access to this treatment, he is now learning independent skills. He is making small meals for himself. He is doing his laundry. He can perform chores around the house.  He is contributing to the family unit and because he is more engaged it has changed the dynamic of the family’s life and his.

These laws are changing lives.

They can change yours.

If you live in one of the 27 states that have not passed autism insurance reform and want to get involved to change that visit www.autismvotes.org and sign up today.

Good luck Oregon. We are rooting for you!

KEY: Green - Enacted law Red - Autism Speaks endorsed bill in 2011 Yellow - Working on bill in 2011 Blue - State not currently pursuing legislation in 2011

State Autism Health Insurance Laws Should Be a Part of a National Benefit Package

January 12, 2011 8 comments

This blog post is by Stuart Spielman, Senior Policy Advisor & Counsel for Autism Speaks.

At the request of the Secretary of Health and Human Services, the Institute of Medicine (IOM) is undertaking a study on “essential health benefits” – the benefits that must be provided by insurance purchased through the competitive marketplaces created under the new healthcare reform law.  The IOM will be holding public hearings in Washington on January 13th and 14th to consider the policy principles that should be taken into account in defining specific elements of the benefits package.  The IOM has sought comment on a number of questions, including the methods the Secretary should use in evaluating state health insurance coverage laws for inclusion in the national benefit package.  Autism Speaks has recommended that the Secretary judge these laws by the following principles:

  • Efficacy in improving benefits and services to populations at risk of poor health outcomes. For individuals with disabilities, state health insurance coverage laws can remedy coverage determinations that reflect bad health policy.  Arbitrary decisions regarding medical necessity, denials based on artificial distinctions between habilitation and rehabilitation, and faulty judgments that specific treatments are experimental can entirely shut out vulnerable populations from access to health care.
  • The benefit of a law relative to its cost. Market decisions regarding coverage may place undue emphasis on short-term economic costs rather than longer-term gains.  A broad-based calculus should be used when evaluating state health insurance coverage laws: extended life, reduced disability, and improved community integration should all be considered when evaluating laws that affect people with disabilities.  A required benefit that enhances a child’s ability to live safely at home and diminishes special education and social services costs pays for itself.
  • Continuity of care. Americans, particularly disabled Americans, make fundamental choices based on health care.  They decide where to live and for whom to work with an eye on benefits and services.  State health insurance coverage laws influence their decisions.  These laws, which are often the result of years-long efforts by mothers and fathers and children, deserve deference, as people continue to rely upon them.  Failure by the Secretary to include in a national essential benefits package laws that protect people with disabilities would reduce their coverage and jeopardize their health.

These principles underscore the value of state autism health insurance coverage laws.  The burdens of autism are exacerbated by gaps in insurance coverage that result from the denial of benefits for proven treatments.  Children with autism are more likely than other special needs children to delay or forego care entirely.  Their families have greater out-of-pocket costs, diminished work hours and lost income, and more negative health plan experiences.

Twenty-three states have responded to the challenges faced by individuals with autism and their families by requiring comprehensive coverage.  Cost analyses suggest that the long-term benefits of autism health insurance laws will be substantial relative to their modest cost, which is often estimated at less than .5% of premiums.  Millions of Americans now rely on these laws to establish a standard of care.

Existing state autism insurance coverage laws remedy the failure of the market to provide effective coverage for a significant public health challenge.  Judged by any standard – justice, cost to benefit, or maintaining quality care for a vulnerable population –these laws should be integral to a national essential benefit package.

Tune in to NBC Nightly News, Saturday, January 1

December 30, 2010 3 comments

NBC Nightly News will air an interview Saturday with Peter Bell, Autism Speaks’ executive vice president for programs and services, as part of a segment on new laws that are going into effect on January 1, 2011. Bell will address autism insurance legislation that will become effective in eight states: Iowa, Kansas, Kentucky, Maine, Massachusetts, Missouri, Nevada and New Hampshire. These vital new laws, which affect state-regulated plans, will require health insurance policies to cover the diagnosis and treatment of autism spectrum disorders. To date, 23 states have passed autism insurance legislation. Autism Speaks is actively working to introduce new bills in an additional 15 states during the upcoming 2011 legislative sessions.

For more information on federal and state autism initiatives and to contact your legislators about much needed autism insurance reform, visit www.autismvotes.org

Check your local listings for NBC Nightly News.

Autism Speaks Calls on the National Community to Join Michigan Lt. Governor-Elect Brian Calley to “No Longer Remain Silent” on Autism Insurance Reform

November 29, 2010 2 comments

Autism Speaks Calls on the National Community to Join Michigan Lt. Governor-Elect Brian Calley to “No Longer Remain Silent” on Autism Insurance Reform

Nation, families in Michigan need your help today to get autism insurance reform passed before the end of their session and to become the 24th state to pass this legislation.  After four years, Michigan stands poised to finally join nearly half of the country in passing autism insurance reform legislation. The House has already passed the bill, but the State Senate must take up this issue before the end of the legislative session this week.

We are asking the national autism community to come together in support of this effort on behalf of Michigan families by taking just five minutes to call Michigan State Senate Majority Leader Mike Bishop at (517) 373-2417. Urge him to please bring autism insurance reform to the floor for a vote before the end of the legislative session.

Michigan Lt. Governor-Elect Brian Calley and father of a daughter with autism has been an outspoken supporter of the autism insurance reform effort in the state. Watch his video and share it with friends across the country.  Together we can join Lt. Governor-Elect Calley in saying “We will no longer remain silent.”

For more information visit www.autismvotes.org/michigan.

 

Health Care Reform: What Does it Mean for the Autism Community?

March 23, 2010 8 comments
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