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!
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.
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.”
Earlene Sharp Anglin is a part-time geography instructor at Marshall University in Huntington, W.V. who also volunteers with various local autism organizations and mentors parents of newly diagnosed children. Having a 9 year old son with autism, she understands the difficulty of affording the medically necessary treatments required of this diagnosis. As Autism Speaks’ West Virginia State Advocacy Chair, Earlene played a key role ensuring passage of House Bill 2693, requiring insurance companies to cover the treatment of autism.
On April 1, 2011 West Virginia made history becoming the 25th state in the nation to enact autism insurance legislation. Being a key advocate throughout the legislative process allowed me to witness first-hand the dynamics which would come together and ultimately make this law a realization for West Virginia families.
The very fact that families have to fight for insurance coverage is maddening.
It was difficult for many of our families to get past this but you must remove anger from the equation in order to be productive. One key element of success in West Virginia was the formation of a cohesive, core group of advocates both in the Capitol and throughout every corner of the state. Consisting of parents, providers, and a diagnostician, this group of volunteers vowed to have “one voice” prior to the session’s commencement and to carry this legislation to a successful outcome.
We never took our eyes off the goal – to end autism insurance discrimination for our children.
Decisions were made through a series of meetings and conference calls – sometimes late at night or early in the morning. Daily updates were communicated to the core group of advocates all day long – thank goodness for cell phones, email, and texting. The Autism Votes Advocacy Program and social media blended together to update and mobilize other interested parties throughout the state.
Positive persistence was a constant for all involved.
Another crucial element of our success was “finding our champion” ~ someone within the legislature to herald our cause. When you find yours, developing an open, honest and respectable relationship with these key legislators is vital. In most states, including West Virginia, there are legislators whose lives have been affected by autism. However, our champion in the West Virginia State Senate, Senator Evan Jenkins, is not directly affected by autism. Nonetheless, he proved to be a credible, respected, and admired pillar of strength and determination for those in the autism community. He escorted HB 2693 through the Senate with a calm, steady hand and was remarkable in his ability to effectively communicate the historical significance of this bill for countless West Virginia families. Equally as important, he kept an open line of communication with key advocates providing status updates and invaluable political insight. His dedication to our cause was unwavering. I am proud to be his constituent.
As the autism insurance reform legislation train rolls on, I would urge future advocates in other states who climb aboard to take some time and get to know as many of your states’ representatives as possible – personally. Your strongest supporters may not always be the most obvious. It is important to make the effort to find a true champion, or two, within your state who is willing to catapult autism into the spotlight and then guide you through the abstruse process.
Finally, Autism Speaks through their Autism Votes program afforded West Virginia families professional testimony, guidance, and advocate expertise from a national perspective. The formidable work of the Government Relations/Advocacy Teams helped pave the way for a successful outcome. All this time I thought money raised at Autism Speaks went only for medical research and awareness projects, but I learned how invaluable an investment in their Government Relations department can be. Members of the Government Relations department came to West Virginia to testify and to share the knowledge and experience of having been involved in the legislative process in numerous other states. Their advocacy website proved to be an invaluable tool and they answered our calls and emails, day or night. West Virginia families did not have to pay for any of this. This was a great service to the autism community as a whole in our state.
Unified advocates, unwavering champions, and unrivaled experience are without question necessary requirements for successful passage of autism insurance legislation. Had any of these three elements been missing from the equation here, the outcome could have very well been quite different.
Ultimately, HB 2693 passed both the House and Senate unanimously and Governor Earl Ray Tomblin signed the bill into a law which will go into effect on July 1, 2011. This “World Autism Awareness Day”, and indeed all during Autism Awareness Month, West Virginian’s should embrace this moment and celebrate our legislators’ achievements.
This post is by Stuart Spielman, Autism Speaks Senior Policy Advisor & Counsel.
On February 23rd, five families with children on the spectrum gathered at Newark Airport and boarded a Continental Airlines plane that never left the ground. By any measure, their trip was a success.
For the children involved, the mock flight provided experience with each phase of air travel: gathering belongings for the trip, riding to the airport, waiting in line at the ticket counter, passing through security, heading to the gate, waiting (again) to board the plane, boarding the plane, preparing for take-off, “flying,” deplaning, waiting (yet again) at the luggage carousel, and then traveling home. During their journey, the children encountered airline personnel as well as officials from the Transportation Security Administration (TSA). Just as the children gained experience with air travel, so did the airport officials learn more about them and their families.
The mock flight at Newark Airport was arranged by the Autism Explores program based at the Albert Einstein Medical Center, directed by Wendy J. Ross, MD. Dr. Ross came up with the idea for the airport program after one of her patients had a traumatic travel experience. “I thought, ‘This can never happen to one of my families again,” Ross said. Dr. Ross has worked with airline, TSA, and other officials to develop the Autism Explores program, which couples simulated travel with training sessions for airport, TSA, and airline officials. Her work has been supported by Representative Robert Brady of Pennsylvania and Senator Frank R. Lautenberg of New Jersey, among others.
Dr. Ross hopes to expand the mock flight program to airports around the country. She is working on developing similar teaching programs for museums and other destinations for families on the spectrum.
For more information about the Autism Explores program, call (215) 456-6083.
Autism Speaks and the Association for Professional Behavior Analysts Team Up for a Workshop on Autism Insurance Reform
This post is by Lorri Unumb, Esq., Senior Policy Advisor and Counsel, Autism Speaks.
For several years now, Autism Speaks has kept a map of the United States on our wall and on our Autism Votes website where we track states that have passed autism insurance reform bills. Our map is color-coded: Blue is for states that are not pursuing autism insurance reform; yellow is for states that are developing insurance bills; red is for states where autism insurance reform bills have been endorsed by Autism Speaks; and green is for states that have enacted autism insurance reform laws.
We celebrate with great joy the addition of every new green state, of which there are now 23.
But over the course of the last couple of years, we have developed a great appreciation for the fact that passing a new law – becoming a green state – brings with it not only joy, but also major headaches. Passing a law is but the first step toward reform; implementation and enforcement of the new laws can be equally difficult. A new law on the books will not make adequate networks of participating providers suddenly appear. A new law will not make appropriate CPT codes and rate structures magically materialize. Advocates in newly green states face mountains of work and many thorny issues. In other words, to quote Kermit the Frog, “it’s not that easy being green.”
To assist families, providers, regulators, and others who are working to pass or implement new autism insurance laws, Autism Speaks has partnered with the Association of Professional Behavior Analysts to present a full-day workshop on “Health Insurance Coverage of ABA Treatment for Autism Spectrum Disorder.”
This workshop will feature leading experts in the field in two sessions:
- The morning session is called “Obtaining Health Insurance Coverage of ABA Intervention for Autism” and features Gina Green, PhD, BCBA-D, of the Association of Professional Behavior Analysts; Eric V. Larsson, PhD, BCBA-D, of the Lovaas Institute Midwest; Billy Edwards, MS, BCBA, of Behavioral Innovations; and myself. This session will provide participants with information, suggested strategies, and supporting resources for advocating for legislation to require health insurance coverage and working with insurance companies to obtain coverage of ABA intervention in individual cases. Topics will include making the case for the efficacy and medical necessity of ABA intervention for autism, the costs and cost savings of insurance coverage, qualifications of ABA providers, the basics of becoming a health insurance provider, working with health plans, and billing.
- The afternoon session is called “Implementing Autism Insurance Laws” and features Bryan Davey, PhD, BCBA-D, of the Arizona Centers for Comprehensive Education and Life-Skills; Daniel Unumb, Attorney; Susan Butler of the Early Autism Project; as well as Dr. Green and Dr. Edwards. This session will focus on topics such as appealing denials of coverage, addressing provider reimbursement issues, and working with state insurance officials and others to ensure compliance with mandates. Successes as well as obstacles to successful implementation and strategies for overcoming those obstacles will be discussed from the perspectives of advocates, family members, and providers of ABA treatment.
This exciting workshop will take place on Thursday, March 31, 2011 as a pre-conference event adjoining the first annual conference of the Association for Professional Behavior Analysts. The workshop (March 31) and the conference (April 1-2) will take place at the Marriot Copley Plaza in Boston, and both are open to the public. Registration is now open and continues through March 15. Make plans now to join us for this informative event.
The past few days have been a whirlwind of action in the Virginia General Assembly on the autism insurance reform bills, Senate Bill 1062 and House Bill 2467. On Monday, the Senate Labor and Commerce Committee passed the bill. At that hearing were many parents and advocates from the Virginia autism community, including Robbie Maino, a young man with autism who testified before the committee in support of SB 1062. You can watch his testimony HERE.
Robbie also wrote a letter to all members of the Virginia House of Delegates, which passed HB 2467 on the floor just yesterday. His mother, Marybeth, forwarded his letter to Autism Speaks and Robbie’s words resonated in such a way with us that we are eager to share them with the entire community.
Here is Robbie’s letter:
Dear Members of the Virginia House of Delegates,
I want to extend my sincerest thanks for your support of the Autism Insurance Reform Bill. I am a 17 year old that has been living with autism my whole life and I know from personal experience that early intervention is one of the most vital steps in a child’s life with autism. Because of my parents, I have been fortunate enough to receive such treatment from an early age and have gone through countless therapies and behavioral counselors to get to where I am today. Because my parents took the personal burden of having to give up so much of their livelihood to give me this blessing, I am now an independent advocate of autism awareness and I spend a good portion of my time volunteering and working to help assist children like myself. Without this intervention on my parent’s part, I would most likely not be graduating high school. Instead, I will be graduating high school in June and have been accepted into the President’s Leadership Program at Christopher Newport University. I sincerely believe that this bill, once put into action, will make a difference for all those children that don’t have it as well off as I did, and make their lives and those that care for them much easier.
Autism isn’t an easy thing to deal with. Before I got to where I am today, I had enough close friends to count on one hand. The few that I had were forced to deal with my social awkwardness and my general obnoxious behavior. I made life for my parents interesting, but I have no doubt that life would have been very different for them if I was “normal.” Worst of all, however, I didn’t realize how much their love played a role in my life until high school, and I rarely gave them thanks until I was aware that they more than deserved it. This patience and kindness, repaid very often by bad behavior on my part, shows the stubborn confidence of my friends and family that I COULD get better. And I like to think they were right.
No amount of education could have prepared me for life, what I really needed was therapy, social skills training and medication. I am one of the incredibly lucky few who have been able to benefit from these therapies from an early age and I have been able to learn how to deal with my high functioning autism (called Asperger’s). Now I can speak for and work with others who have it. With the passing of this bill, I look forward to seeing the amount of kids who can speak for themselves grow exponentially.
I recognize that the cost of this bill is notable, and many of you had hard decisions to make when voting. For those who voted no, I understand your viewpoint, and I have an incredible amount of respect for your sympathy for the financial impact and your careful consideration. I know that you weighed the choices and decided what you believed was right. Of course, I also need to thank, most of all, those of you who voted yes for this bill. You also weighed the choices, bearing in mind the burden of either choice. You listened to the advocates for each side, and you also decided on what you believe is right. Everyone has choices that face them, and not everyone will pick the same side. Differences are to be respected, not used to separate individuals. If anything, what I learned the most on my visit to the hearing and passing of this bill, is the power of listening to different viewpoints in an argument, because it makes it easier to understand the issue and respect all who are involved.
Thank you for continuing to work to pass this bill into law. I hope all of you realize the impact you are going to have on hundreds of children’s lives all around Virginia. Children who have been already crossed out for a bright future, who live every day wishing to become something more than they currently are. Children whose parents can’t afford to help them without help from insurance, and sometimes even, children whose parents have given up on them. Many of these children will receive treatment and, you have my word, will become something greater than anyone around them could possibly imagine. All these children will have a chance at living a meaningful and impactful life because of you. In 15 years when you see the headlines of a newspaper or a story on the news detailing a man with autism designing a computer system or finding a cure for a disease, give yourself a pat on the back. It’s very likely they did so thanks to you.
Thank you for voting for the bill and thank you for building a brighter future for children with Autism. I am planning on trying to make it to the General Assembly this week to support the bill as it is presented by Delegate Greason when it goes to the floor.
Best Regards Always,
Atlee High School, Class of 2011
Christopher Newport University, Class of 2015
Thank you Robbie.
This guest post is by Lavanda Robertson, who is the Autism Speaks Virginia Chapter Advocacy Chair and mother of a child with autism.
Some people would say that after the first defeat, you should just give up. More people would douse you with this opinion even more heavily after the second time you go down. By the third time…
That is exactly what is going on in Virginia right now. Last week, Autism Speaks joined with the Virginia Autism Project and parents and advocates from across the Commonwealth to endorse the autism insurance reform bill for the third year in a row. Autism advocates have been working since mid to late 2008 on making this legislation a reality in our Commonwealth. Coming back for the 3rd straight year will not be easy. We may be battered, beaten and bruised from the beating we have taken, but we refuse to give up. Despite a continually mistaken opposition and a tough as nails legislature, our community and our legislative champions are still walking tall and committed to ending insurance discrimination against individuals with autism.
How is it that we are still able to do this? The only thing I can think of is a higher power that knows the intentions of our hearts and gives us the will to keep moving forward. Not only does having a child with autism rob you of sleep, nutrition, exercise and a social life, but holding down a full-time job while working around the clock on a project that has seen two years of defeat adds insult to injury. However, it is an injury that I gladly welcome. It is injury that may hurt in the short term, but whose long term benefits for our children will be great.
This is not about me, or even about what my family has been though. This is about the thousands of children in Virginia that require evidence-based medical treatment for their autism and yet are continually denied coverage from their health insurance companies for their speech therapy, occupational therapy, or behavior health treatments, such as Applied Behavior Analysis (ABA). This is about the Commonwealth of Virginia and about an entire nation that must move toward a time when all children get the medical treatment they need to lessen their symptoms of autism.
I ask that you consider this when you go through your day today. I ask you to consider taking part in this effort. There are 27 states that still have yet to see passage of autism insurance reform legislation. If you live in Virginia, please call and ask your state legislators to support the 2011 autism insurance reform bills. If you live in another state, please take a look at the AutismVotes.org website, find out where your state is in this process, and join in this effort! We will not stop our efforts in Virginia and Autism Speaks will not stop its efforts in states across the country until every individual with autism receives coverage for the care and treatments they need and deserve.
Have this wish I wish tonight