Posts Tagged ‘Government Relations’

Fly Away: Mock Flights Prepare Families With Children on the Spectrum For Air Travel

March 2, 2011 7 comments

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.

Kermit the Frog Was Right: “It’s Not Easy Being Green”

February 23, 2011 3 comments

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.

Check out our flyer for more information.  Space is limited, so register today at:

Robbie Maino Speaks… This Time the Virginia General Assembly Listens

February 2, 2011 14 comments

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,

Robert Maino

Atlee High School, Class of 2011
Christopher Newport University, Class of 2015

Thank you Robbie.

I wish I may, I wish I might

January 27, 2011 3 comments

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 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

In Healthcare Reform, Words Do Matter

January 20, 2011 2 comments

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

On January 13 and 14, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, held a public workshop on a critical part of the new healthcare reform law, the essential health benefits package.  The law describes as essential the following general categories of items and services:

  1. Ambulatory patient services
  2. Emergency services
  3. Hospitalization
  4. Maternity and newborn care
  5. Mental health and substance use disorder services, including behavioral health treatment
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices
  8. Laboratory services
  9. Preventive and wellness services and chronic disease management
  10. Pediatric services, including oral and vision care

The task of the IOM, and ultimately the Secretary of Health and Human Services, whom the IOM is advising, is to develop the rules for using this list in designing health plans that will be offered beginning in 2014 through state insurance marketplaces.

For families affected by autism spectrum disorders(ASD), the fifth item on the list holds a special meaning.  The words “including behavioral health treatment” do not appear by accident; on the contrary, these words are part of the law because of amendments offered by Representative Mike Doyle, co-chair of the Congressional Autism Caucus, and Senator Robert Menendez.  As Senator Menendez pointed out at the time he offered his amendment.

Behavioral health treatments help to reinforce wanted behaviors and reduce unwanted behaviors, and the treatments are critical for individuals affected by autism and a variety of other disorders.

They can help a child to communicate and care for themselves; they can help that child from — stop him from hitting himself and those around him; they can enable a child to attend regular education classes, rather than special education classes; they can enable a child to live at home, rather than an institution.

Representative Doyle and Senator Menendez (joined by Senator Richard Durban and Senator Robert Casey) have separately written the IOM, urging that the behavioral health needs of people with autism spectrum disorders be addressed and that applied behavior analysis be included in all health plans.  The IOM and the Secretary should accept this counsel.

On January 18, the Interagency Autism Coordinating Committee (IACC) considered health care reform and insurance coverage issues as part of its meeting agenda.  These issues are likely to be further considered at the next full meeting of the committee on April 11.  The focus on health care reform at the IOM and the IACC present a critical opportunity to correct a decades-long pattern of discrimination against people with ASD.

See Stuart Spielman’s presentation to the IOM

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 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.

Happy 2011!

January 3, 2011 9 comments

The change of the calendar year marks another pivotal step forward in the effort to pass meaningful autism insurance reform nationwide, as several state autism insurance laws go into effect on January 1, 2011.

The states that will begin requiring certain state-regulated health insurance plans to cover the screening, diagnosis and treatment of autism spectrum disorder effective January 1, 2011 include:







New Hampshire

Some state autism insurance reform laws actually became effective earlier in 2010, but because the majority of health plans operate on a calendar year basis, the true impact of these laws will occur when the new plan years turn over on January 1, 2011.  These states include:


New Jersey

In addition, Vermont’s autism insurance reform legislation will become effective July 1, 2011.

If you live in one of the newly effective states or work for a company that is headquartered in one of them, you could potentially benefit from the legislation. You can find details and helpful links related to the specifics of your state’s autism insurance law by visiting Autism Votes’ State Initiatives page and then clicking your state on the provided interactive map. This information will continue to be updated as it becomes available in the various states.

In addition, it is important to check with your employer’s human resources department to determine whether your health plan is subject to state law.  Some employers chose to self-insure, and are thus not subject to state law, but rather ERISA, a federal law.  If this is the case, please visit the Autism Votes resource page for self-insured plans.  Many self-insured companies are choosing to voluntarily comply with state autism insurance laws once they are made aware of them.

With twenty-three states now requiring health insurance to cover autism treatment, the momentum of this national trend is undeniable.  It is our hope at Autism Speaks that the remaining states pass meaningful autism insurance reform as quickly as possible, and that the states with laws on the books properly implement and enforce them so that families dealing with the challenges of autism at long last have the coverage they need.

NBC Nightly News featured Autism Speaks and new insurance policy laws being passed in 2011.

Combating Autism Reauthorization Act 2010 Introduced! Senators Dodd and Menendez Are Again Champions for Nation’s Autism Community

December 20, 2010 2 comments

We are pleased to announce that Senator Chris Dodd (CT), along with Senator Robert Menendez (NJ) introduced the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044) late this past Friday. This new legislation would reauthorize the landmark Combating Autism Act of 2006 (CAA), significantly increasing both the depth and breadth of the federal response to the national and public health emergency posed by autism spectrum disorders (ASD).

As a result of the 2006 CAA, our community has made tremendous strides in federally-funded and directed research. It was the detailed surveillance by the Centers for Disease Control under the CAA that identified the increasing prevalence of autism: now a staggering 1 in every 110 American children – including 1 in 70 boys – is diagnosed with an ASD, making it the nation’s fastest-growing, serious developmental disorder.

Additional significant advances under the CAA have been realized, including:

  1. Improved ASD screening methods and universal screening recommendations;
  2. Development of effective early intervention methods for toddlers with autism;
  3. Creation of clinical networks aimed at improving physical and behavioral health;
  4. Identification of several autism susceptibility genes, leading to discoveries of new methods for diagnosis and treatments; and
  5. Development of best practice standards of care for co-morbid medical conditions including sleep and gastrointestinal disorders.

The Combating Autism Act of 2006 finally put us in the right direction toward formulating and implementing an effective research strategy to investigate the mysteries of autism. It is imperative that we continue to refine and intensify research into the potential causes of autism and determine ways we can improve the lives of people living with autism today, as well as their families.

Please support the CARA by taking action today! Your support on this issue is crucial in order to continue to address the public health crisis of autism and to help individuals with autism and their families across the country.

Here’s How You Can Help:

1) CALL AND THANK SENATORS DODD AND MENENDEZ! Call Senators Chris Dodd (CT) and Robert Menendez (NJ) and thank them for their leadership in introducing the Combating Autism Reauthorization Act.

Senator Dodd – (202) 224-2823
Senator Menendez – (202) 224-4744

2) CLICK HERE TO SEND AN EMAIL TO YOUR U.S. SENATORS AND URGE THEIR SUPPOR FOR CARA! Make sure to personalize the email and explain briefly why your Senators’ support for this bill would mean so much to your family.

3) SIGN UP TO STAY INFORMED! Check out for updated news and information on this bill and sign up to receive our email action alerts.

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



Get every new post delivered to your Inbox.

Join 1,049 other followers

%d bloggers like this: