Posts Tagged ‘autism insurance reform’

How does research help my child today?

November 25, 2011 3 comments

 Today’s “Got Questions?” reply comes from Rebecca Fehlig, Autism Speaks national director of field and chapter development

I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.

Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.

But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.

His words produced gasps around the room. My heart sank.

But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.

Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.

It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.

The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.

Never before had the importance of funding research become so clear to me!

Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.

And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.

The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.

We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.

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

Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit

For more news and perspective, please visit the Autism Speaks science page.

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


Tough Cookie

August 31, 2010 Leave a comment

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.

Passing autism insurance reform legislation has been one tough cookie indeed!

In 2007, when Autism Speaks launched the Autism Votes program and Government Relations Department, three states had meaningful insurance coverage for children with autism.  Today, three years later, our community has enacted legislation in 20 more states in an unprecedented wave of reform across the United States. It has been three tough years and we still have a long way to go to achieve reform for meaningful health insurance coverage for every person with autism in our country, but we are well on our way!

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last couple of blogs has focused on each of the ingredients in our recipe – why we need them, what purpose they serve and how they should be blended together.  Flour represents our grassroots effort.  Eggs represent unity and focus of our community.  Butter which represents professional lobbyist assistance. A pinch of salt represents the bill’s legislative champion and sugar represents the policy.  Each state’s “cookie,” their autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but by following the cookie dough recipe we have a tasty treat in the end for people to enjoy.

We made our dough and it is chilling in the refrigerator while we get out the cookie cutters, the rolling pin and the sprinkles to decorate the cookies. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is our aim.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

Cookie dough is just cookie dough until you bake it. Similarly, a bill is just a bill – words on paper that might read well but have no true impact – until it becomes a law and actually affects change.

Before we roll out that dough, we preheat our ovens and begin to make visits in the off season to legislators.  We start a buzz that heats up our issue long before we put the dough in the oven.  We sprinkle out a little more flour on our countertops and start rolling our dough to shape it for each state.  We lay the cut out cookies on the sheet and sprinkle them with the final touches. We always make sure to put on our oven mitts so we don’t burn our hands.

As the cookies begin to bake, they start to smell great.  We can almost taste them.  But we can’t take them out too early or we will just have hot dough!  We can’t leave them in too long or they will burn up, be inedible and we will have to start over.  We have to put them in and check on them throughout the process to make sure we have baked the best cookie that we can bake.

Do you live in a state that doesn’t have “cookies” yet?  Are you drooling to have some?  We could always use more flour!  Get involved.  We make things easy for you to get scooped up at Autism Votes.  We send you easy action alerts to follow so you know just what to do, how to act and when to act.  We even provide scripts to help you make your phone calls and send e-mails.

We need more help at every level so if you have ever had someone say to you, “I wish we could help you and your family!” here is a low-cost, high yield way that they can do just that.  Ask your family members, co-workers, therapists, teachers, neighbors and friends to sign up at this week.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit

How Sweet It Is!

August 24, 2010 1 comment

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.

In both our Federal and State-based legislative initiatives, Autism Speaks uses a specific formula – our “cookie recipe.” My last two blogs focused on flour, representing our grassroots effort, and eggs, which represent unity and focus.  With our cookie mix fully underway now, we need to add in three new ingredients – butter, which represents professional lobbyist assistance, a pinch of salt, which represents the bill’s legislative champion and sugar, which represents the policy.  Each state’s “cookie,” its autism insurance reform initiative, is shaped, flavored and decorated differently once we bake them but when the recipe is followed to a tee we have a tasty treat in the end for people to enjoy.

Most sugar cookie recipes call for both one stick of butter, a pinch of salt and a cup of sugar.  In order to get all the ingredients to mix most effectively, you have to blend all three of these before you mix them in with flour and eggs. Our goal at Autism Speaks is to secure the greatest benefit for as many children for as long as possible.  Depending a state’s existing insurance code and their particular political-economical condition, our model legislation is retrofitted through a development process that requires legislators and the community work together to produce bill language that is most likely to pass.  Although it sounds counterintuitive at first, developing a perfect bill is not necessarily our aim. Passing a good bill, that achieves our number one goal of the highest coverage for the most children, is what we are after.  Politics is the ultimate art of negotiation – start high and work down through all interested parties – the parents, the children, the community as a whole, the legislators and the executive branch – to roll out a bill that the parties can agree to and – here is the key word – enforce.

A bill is just a bill – words on paper that might read well but have no true impact.  A law is what actually affects change.

So we take our sweet piece of policy, the sugar, and often blend that together with butter, our lobbyists or other professional advisors, before we even begin adding the other ingredients to the mix. Once that is all whipped up together we throw in our pinch of salt – which is a champion.  We have had champions in this state-by-state campaign who have been, most definitely, worth their salt. These champions fight like pit bulls in committees and on the legislative floor for your child almost like their own.  To be most effective, these ingredients are mixed in a separate bowl, and then folded in with the flour, our grassroots, and eggs, our unity and focus, to produce the raw cookie dough.

Cookie dough made without sugar is just a biscuit.  Cookie dough made without butter doesn’t have the smooth texture needed to roll it out and shape it properly.  And salt?  It’s just a pinch…but that pinch is important.  Salt is used in baking for its chemical properties.  Salt slows down all the chemical reactions during baking making the dough stronger and tighter. Salt impacts the shelf life of the final product and it potentiates the flavor of all the other ingredients, especially the flour.  It might be the tiniest portion with regard to the scale of other ingredients but incredibly essential.

With all of these ingredients assembled and blended our dough is almost ready. But just like a bill is a bill – NOT a law. Similarly, dough is just dough – NOT a cookie. Next week, we will learn how to roll out that dough, have our cookies take shape and finish our recipe!

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit

In Memoriam: Rod Shealy

August 19, 2010 1 comment

All of us at Autism Speaks are profoundly saddened at the passing of Rodney Ryan “Rod” Shealy, Sr., brother of Lorri Unumb, Autism Speaks senior policy advisor & counsel. A longtime South Carolina political advisor and businessman, Rod helped Lorri draft and find legislative support for the state’s autism insurance reform law, named “Ryan’s Law” after Lorri’s son with autism. Colleagues and South Carolina State legislators remember Rod as a man passionate about the political process and his role in it, but also as one who never missed out on the fun and games of politics. He pushed those he worked with to always do their best and, no matter how far behind in the polls a client may have been, he never once doubted his ability to win. We extend our deepest sympathies to the Shealy and Unumb families and ask the autism community to join us in mourning the loss of this great political ally. Thank you, Rod, for seeing the potential in your nephew, Ryan, and others like him, and for the critical role you played in starting the autism insurance reform movement that is now helping families across the nation access the insurance coverage they deserve.

Flour Power

August 4, 2010 3 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.

When you build anything from skyscrapers to cookies, everyone knows that you have to begin with a solid, strong foundation. Autism Speaks’ approach to advocacy in both our Federal and State-based initiatives use a specific formula, what we call our “cookie recipe” as our foundation for success. We firmly recognize that each state’s “cookie,” its autism insurance reform initiative, will be shaped, flavored and decorated differently. But when the community follows this tried and true recipe, they have a big, batch of cookies at the end for their celebratory party.

One of the most fundamental ingredients in any cookie recipe is flour. Without flour, a sugar cookie recipe is basically just butter, eggs and sugar – it’s the flour that makes it all come together and taste good. All-purpose flour is comprised of both hard and soft wheats to produce a substance with fine texture and high starch. As a result, the baker doesn’t have to stretch it or make it rise much to produce a perfect cookie. Same with our grassroots advocates. They bind all of the efforts of the policy, the lobbyists and the political leaders. They provide the foundation of the movement that affects change in our children’s lives and come from a variety of backgrounds, blended together for one purpose.

Grassroots are a vital ingredient in comparison with all the other ingredients required to make our “cookies.” They are the flour in this recipe. Typically only 10% of the American population participates in any political activism.  That means that 90% of us won’t get involved directly with issues that can impact and change our lives.

The autism community has a long laundry list of issues to work on. Can we afford to keep asking 10% of the community to help make our children’s lives better?

In the 25 states which passed legislation, the grassroots have doubled their efforts. They haunt the halls of their state legislature. They dial the phones until their fingers are worn out and their voices are weary. They invite legislators to their homes for BBQs and dessert parties to meet their children. They search for creative ways to develop and maintain a presence at the Capitol so everyone knows who they are the minute they see them coming.

In the end, they build relationships with those who represent them. In a world of instant communication and online social media, that personal connection with representatives is key to passing effective legislation. Our community needs way more than the national average of 10% for participation to improve our efficacy. We should be aiming for double that, two cups of flour power, 20%.

What a difference that would make in moving all of our issues along more quickly!

Flour doesn’t make a cookie alone just like grassroots blowing in the wind without sound policy, direction and focus won’t affect change.  Every state needs to double its efforts this fall to prepare for our bake off next spring legislative season … because without that flour power … you just have sweet, scrambled eggs.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit


The Tide is Changing: Why the Autism Community Needs Insurance Reform

July 9, 2010 1 comment

Autism Speaks EVP of Programs and Services Peter Bell, spoke at NY State Sen. Gillibrand’s press conference on Wednesday, July 7, to support NY State insurance legislation. Below is an excerpt from his speech.

When the CDC released the new rates of autism in the U.S. last December, I remember staring at my computer in disbelief for what seemed like an eternity. My “autism life,” which dates back to 1996 when my now 17 year-old son was diagnosed, flashed before my eyes. All I could see were numbers

1990                1 in 2,000
2000                1 in 500
2004                1 in 166
2007                1 in 150
2010                1 in 110

After gathering my composure, I opened a spreadsheet on my computer and did a few more calculations:

  • Using the new autism prevalence of 1 in 110 children, I calculated that among the estimated 4 million births in the U.S. each year, approximately 36,500 children will eventually develop an autism spectrum disorder.
  • Since there are 525,600 minutes per year (365 x 24 x60), that means that a child is diagnosed less than every 15 minutes (14.45 minutes to be exact).
  • Today alone, roughly 110 families will hear the words “your child has autism.” 70 of those children will be boys.

As devastating as this sounds, the news gets even worse. When a child is first diagnosed, doctors often struggle to tell the parents what they should do. Years ago, many parents were told there wasn’t anything they could do. Autism was not treatable. Fortunately, we know this is NO LONGER true. Autism IS treatable, especially when diagnosed early.

Another reason why doctors are reticent to suggest or prescribe a treatment regimen for autism is because they know these treatments aren’t always available due to limited access. That’s because historically insurance providers have rarely covered the cost of autism treatment. For years, families have endured marketplace discrimination when it comes to getting the cost of medical treatment for their children’s autism covered even though most of them have health insurance.

This is one of the biggest reasons why autism ends up being such a financial hardship on most families. Families are mortgaging everything including their futures to help their children get better. Autism Speaks recently learned about a family in Florida that is considering giving up custody of their child with autism simply because they can no longer afford to provide the treatment their son with autism needs.

But the tide is changing. Prior to 2007, only Indiana had an autism insurance law that required health plans to provide coverage for evidence-based medically necessary treatments. Since then, 20 more states have enacted laws. New Hampshire and New York are on the verge of joining this elite group of states who have decided to take a stand in support of enhancing the futures of their families living with autism. We urge Governor Paterson to swiftly sign the New York bill so insurance coverage of autism treatments can become a reality for the families of New York and allow the children with autism of this great state to reach their potential.

But states insurance laws are not enough. Many health plans are exempted from state regulations. These self-funded plans, or ERISA policies, are subject to federal laws and thus far we do not have federal health care reform that requires these plans to provide such coverage for autism treatments.

A key provision in the recently enacted “Patient Protection and Affordable Care Act”, or what most of us call health care reform, does require autism behavioral health treatments to be included as an essential health benefit, but this rule applies only to plans offered in the new health insurance exchanges and certain plans offered in the individual and small group markets outside the exchanges. Autism insurance reform is still desperately needed for other plans, including self-funded plans.

On behalf of the million plus families in America who are doing their best to help their children live with autism, we thank you Senator Gillibrand for your strong commitment to bring autism insurance reform to the autism community.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please visit


Hope and Autism Advocacy

June 22, 2010 1 comment

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

I know that you have heard the word HOPE, but have you ever felt the word HOPE? I have and I do.

I feel hope every year at the Greater Hartford Walk Now for Autism Speaks.

I feel hope when my son tells me he is “proud he has autism.” I feel hope when his brothers say they had fun at the Walk for the first time.

At this year’s Walk, hope warmed me every time I personally met a mother I’ve spoken to after her child was diagnosed and she said, “Thank you.” Hope fed my tired spirit when my son’s friend and his entire family joined our Walk team. Hope inspired me, as 8,500 people lined up to walk for their sons, daughters, grandchildren, nieces, nephews, friends, and neighbors. Hope brought me to my knees  as I watched families simply “be” with autism, not afraid of judgment or criticism. And hope brought me to tears as I gathered our legislative champions who I have worked so hard to get to join in the fight for our loved ones.

In 2009, Connecticut became the 13th state in the nation to require private insurers to cover the diagnosis and treatment of autism. Enactment of this bill finally ended autism insurance discrimination in Connecticut, but more importantly it brought hope to thousands of families.

Autism is now a buzz word in our state capitol of Hartford. Legislators are taking note of its impact on their constituents. We have champions who know our struggles, even know our kids’ names.

There is so much more to do to help the nation’s families affected by autism, so much more to do in Congress and in our state capitols. With hope in our hearts, we can and will prevail.

Hope is why I walk and it’s also why I advocate. Hope will be why I walk and advocate, until there is nothing to left to walk and advocate for.

Christopher Reeve said, “Once you choose hope, anything’s possible.”

I choose hope.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please

It’s Time for New York to Pass Autism Insurance Reform

June 18, 2010 12 comments

This is a guest post by Lorri Unumb, Autism Speaks senior policy advisor and counsel. Lorri also teaches “Autism and the Law” at the George Washington University Law School.

In the past three years, 20 states have passed laws requiring health insurance policies to cover individuals with autism and the treatments prescribed by doctors for autism. The New York legislature is on the verge of passing one of the broadest autism insurance reform bills in the nation, and yet some members of the autism community oppose the bill, largely because of its broadness. I write to offer some historical and legal perspective on a bill that embraces a broad approach to legislating.

I have been following New York’s autism legislation with great interest, not only because of my job as policy advisor with Autism Speaks but also because my son with severe autism has health insurance that is governed by New York law. I have a vested personal and professional interest in the legislation.

Further, I have a somewhat unique historical perspective, given my role in helping to spur the national movement toward autism insurance reform. In 2005, while I was a law professor, I wrote legislation in South Carolina to require health insurance coverage for autism. The bill broadly required that:

A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured’s treating medical doctor in accordance with a treatment plan.

The bill did not list the particular treatments that insurance must cover; rather, it required insurers to cover whatever the doctor prescribes, within reason. It contained language that protected the insurers from having to pay for treatments that were unnecessary, not evidence-based, provided by family members, and the like:

[T]he coverage required . . . may be subject to other general exclusions and limitations of the health insurance plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, utilization review of health care services including review of medical necessity, case management, and other managed care provisions.

This legislation passed in South Carolina in 2007, and since that time, children with autism have been receiving meaningful coverage for mainstream treatments prescribed by their doctors, including psychological care, speech therapy, occupational therapy, physical therapy, and the most commonly-prescribed treatment for autism, applied behavior analysis (ABA) therapy.

The South Carolina law is very similar to Indiana’s autism insurance statute, and individuals with autism in Indiana have likewise been receiving coverage under that state’s broadly written bill.

Since 2007, a number of states have passed autism insurance bills that do not embrace the broad approach; instead, they laundry-list the treatments that must be covered. A typical list from these states includes psychological care, psychiatric care, therapeutic care (OT, PT, ST), pharmacological care, and behavioral therapy (ABA). Also, most bills that have passed since 2007 contain significant limitations of coverage, such as a cap that limits spending on ABA therapy to $50,000 per year or an age cap that requires coverage only through age 21.

In 2009, there were pending in the New York legislature four different autism insurance bills, three of which contained a laundry-list of treatments to be covered. The lists varied considerably, and members of the autism community could not agree on how expansive the list should be. The bills also contained various age and dollar caps on coverage.

In October 2009, the Senate Insurance Committee conducted a hearing on all of the pending autism bills. The all-day hearing included testimony from dozens of witnesses and was extremely comprehensive.

After hearing testimony on the competing bills, the committee chair decided to craft his own bill, which returned to the broad approach of merely legislating coverage and leaving for another body (a regulatory body) the exact specifics of the coverage.

As a parent and a lawyer, I support this approach.

By necessity, legislators are generalists and should not be called upon to list the treatment options from which doctors may choose, or to weigh the evidence supporting one medical treatment against the evidence supporting another. It’s not their job. In the context of insurance legislation, their job is to broadly require coverage if they find coverage lacking and within the public interest.

Critics of this bill don’t like the broad approach. They want the certainty of a legislative laundry-list, as has been provided in numerous other states. However, critics fail to acknowledge that the New York autism community itself could not agree on the list and such disagreement is what led to the broad bill in the first place. I have worked with the autism community in almost all of the states that produced laundry-list-type bills and statutes, and never was there dissension within the community that would have required the legislature to choose among various lists.

Critics lodge several other complaints, too.

First, critics don’t like that the bill limits the insurers’ responsibility to covering treatments that are “evidence-based, peer-reviewed and clinically proven.” Critics say this tripartite standard creates an impossibly high threshold that no treatments will meet.

It is not uncommon for states to limit insurers’ responsibility to covering treatments that are “evidence-based,” which I believe is an appropriate limitation. Generally, premium-payers expect insurers to cover mainstream treatments but do not expect insurers to cover treatments that have not been empirically validated.

The issue in the New York bill is the addition of the terms “peer-reviewed” and “clinically proven.” The addition of these terms does not create a higher standard. To be “evidence-based,” a treatment must have been studied and those studies must be have been published in peer-reviewed journals. Thus, “evidence-based” subsumes “peer-reviewed.”

Similarly, “clinically proven” simply reinforces the concept of “evidence-based” treatment but does not set a higher standard of review.

Critics of the bill have yet to name a single autism treatment that would satisfy the traditional standard of “evidence-based” but would not satisfy the tripartite standard.

It seems that what the bill’s opponents really want is coverage for treatments that are not evidence-based. Certainly, there are many protocols that parents of children with autism try on their children that are lacking sufficient evidence of efficacy. I have used some of them with my own son, and I don’t question the intentions of other parents who do so. But I understand that insurers must draw the line somewhere, and “evidence-based” is where the line is traditionally drawn in health insurance.

The overall success of the autism insurance reform movement over the last three years stems largely from the fact that the autism community has not sought special treatment in insurance matters; we have sought equal treatment. All we have asked is that the mainstream treatments that our doctors prescribe for our medical condition be covered by insurance. To have continued success, we must be willing to limit the treatments for which we seek coverage to those that are evidence-based.

Opponents of the autism bill also criticize “the establishment of a four agency committee . . . to pick out whatever ‘science’ they believe in.” Actually, the bill does not establish a four-agency committee. It simply directs the Commissioner of Health to promulgate regulations (a standard practice following new legislation) and directs the Commissioner to consult with three other relevant agencies in the process. In a field where families and services often suffer because one agency never knows what another agency is doing, it is refreshing to see a collaborative process established from the outset.

Further, I am puzzled by the fear of having the Department of Health determine what treatments must be covered. The opponents wish to have a legislative body (generalists) determine a list of treatments that must be covered, but they fear a regulatory body (health specialists) doing the same?

Finally, opponents of the bill apparently fear losing coverage that currently exists under their health insurance policies or failing to obtain coverage for services like anesthesiological and endocrinological care. S.7000B/A.10372A specifies that it “shall not be construed as limiting the benefits that are otherwise available to an individual under the policy.” As such, if anesthesia is generally covered under a policy, it will still be covered without regard to the list of treatments that the Commissioner of Health develops.

Proponents of S.7000B/A.10372A, who are also parents of children with autism, do not wish to limit the treatments that any family affected by autism wishes to use with their children. Nor do we wish to narrowly restrict what doctors may prescribe for their patients. Rather, we wish to support a bill that is likely to pass – a bill with reasonable limitations that are fair to all parties. Proponents see advantages to broadly-written bills like S.7000B/A.10372A, even for those wishing to include treatments outside the mainstream. For instance, if new treatments emerge, or existing treatments go through the rigors of becoming evidence-based, these can be added through the regulatory process to the list of treatments that must be covered without the need for going back to the legislature to amend the law.

The New York autism bill is good policy. It covers individuals with autism of all ages. It does not impose artificial dollar caps on treatments, as many other states’ autism laws do. It asks the legislative and regulatory systems to operate together, as they were designed to do. And it will offer much-needed relief to individuals with autism and their families, as citizens in 21 other states are now receiving.

Autism Insurance Reform: A Bill’s Survival Guide

June 15, 2010 2 comments

Lorri Unumb, senior policy advisor and counsel for Autism Speaks, Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair, his son Noah, wife Tina, and daughter Sydney.

This is a guest post by Josh Cobbs, Autism Speaks Iowa Chapter Advocacy Chair.

When Senate File1/House File 1, more commonly known as Drew’s Bill, was introduced in the Iowa Legislature in 2009, it was an unexpected gift.  The autism insurance reform bill, sponsored by Representative Ray S. Zirkelbach and Senator Daryl Beall, was one of the first pre-filed bills introduced in the legislature that year and we hoped that this early action was a good omen.  The Iowa autism community had tried many times in previous sessions to get a bill introduced with no luck. As it turned out, getting the bill introduced would be the easiest part of this long journey.

Just as quickly as Drew’s Bill was introduced, it was killed by the Senate Commerce Subcommittee.  That was a hard day.  I, along with so many other parents, families and advocates could not understand why legislators did not see the merit in our case for autism insurance reform.  Why did they not understand that requiring that health insurance companies provide children with autism spectrum disorders coverage of medically necessary, evidence-based therapies would not only lead them to live a better life now, it would also save the state money on special education services, institutionalization, and adult services later?  That same day advocates became intensely committed to working over the summer to educate legislators on why insurance reform was needed.

With the education underway, we went back to the Senate in 2010 to again make our case for reform.  This time, we were joined by several key players, such as Lorri Unumb, Senior Policy Advisor and Counsel for Autism Speaks, Judith Ursitti, Regional Director of State Advocacy Relations for Autism Speaks, former Lieutenant Governor Sally Pederson, Senator Beall,  as well as many others that continued to help push for passage of reform legislation.  The first hurdle was the Senate Finance Subcommittee.  The Subcommittee hearing was an all day event.   By the end, we were exhausted, but elated with the unanimous yes vote to move our bill to the full Finance Committee.  With the momentum of the Subcommittee vote, we easily passed the full Committee and then the full Senate.  The autism community was ecstatic.  We could finally see real change on the horizon, but there were still hurdles to cross and the bill’s future was still in jeopardy in the House.

The Iowa House was deeply divided on the bill. HF1 was scheduled for a House Commerce Subcommittee hearing that would become one of the craziest days thus far in our push for autism insurance reform.  The day of the Subcommittee hearing, advocates packed the room.  We knew the bill was scheduled for a vote and that the fate of our effort lay in the hands of the Subcommittee members.  In the end, the Subcommittee refused to vote.  In doing so, they effectively killed our bill.  Even with all the momentum from the Senate passage, all of the education on the issue over the summer, all of the years of activism, hope and prayer from families in the autism community, the Subcommittee would not allow the bill to move forward.

Advocates refused to give up hope.  After going through so much, we just had to get something passed this year.   They say that where there a will, there is a way and for us the way was to include autism insurance reform in the Standing Appropriations Bill, Iowa’s version of the state budget.  Our legislative champions submitted the language and advocates began to contact their Representatives to secure it in the appropriations bill.  It worked!  In a press conference to announce the details of the final appropriations bill, a reporter asked, “what about autism?” Leadership responded, “Autism is in.”

Advocates and lawmakers agree that more work is needed to cover the entire Iowa ASD population. At this point, the bill will only cover state employees, but it is a good first step to give some families the help they richly deserve and begin Iowa on a road towards real and full reform. The passage of the Iowa bill is a testament to the persistence of families in the autism community and the determination of our legislative champions to provide help.   They refused to take no for an answer and did everything possible to ensure that our bill and our effort survived.

To learn more about Autism Votes, take action today on autism insurance reform legislation in your state, or find out about Autism Speaks’ federal legislative advocacy agenda, please


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