Posts Tagged ‘Government Relations’

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.

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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


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IACC workshop addresses strategies for streamlining services and supports

November 11, 2010 1 comment

This guest post is by Carrie Masur Gillispie. She is a Government Relations intern at Autism Speaks with a Master of Education in school psychology.

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee held a workshop on November 8th called “Building a Seamless System of Quality Services & Supports Across the Lifespan,” in Rockville, Maryland (view the agenda here). The all-day event focused on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. The workshop was open to the public, and several community members attended the event including parents, educators, medical professionals, and researchers.

Nancy Thaler of the National Association of State Directors of Developmental Disabilities Services, Bill East of the National Association of State Directors of Special Education, and K. Charlie Lakin of the University of Minnesota painted a picture of the current state of autism services. They noted that while services have come a long way over the past few years, families still need help with accessing service providers and support agencies who can meet their unique needs. They also noted concerns about the increasing demand for autism services due to increased prevalence and the fiscal challenges many states are facing in funding these services.

Self-direction care programs give people with autism more power over deciding how to use public funds to fit their individual needs. Several states have secured federal waivers that give individuals with autism a budget, and the authority to choose how to spend that money among a selection of services and supports. They can tailor a combination of providers to best support their needs. These programs are sometimes referred to as “Cash and Counsel.” Michael Head of the Michigan Department of Community Health and James Conroy of the Center for Outcome Analysis discussed how to implement and evaluate these programs.

There are many different types of services and supports out there, and there is no one-size-fits-all combination to suit the unique needs of each person with autism. Donald Clintsman from the Washington State Department of Social and Health Services emphasized that it is important to cater those services according to each person’s needs. He presented a standardized way to assess each person’s needs in order to deliver the most appropriate services possible.

The training of professionals who work with people with autism was a key topic for three speakers. Kevin Ann Huckshorn from Delaware Health and Social Services presented training strategies to prevent and reduce the use of seclusion and restraint. Her model emphasized preventing conflict escalation and encouraging positive support. Carrie Blakeway of The Lewin Group and Erika Robbins from the Office of Ohio Health Plans highlighted issues surrounding hiring, educating, and supporting those who work with people with autism.

Sheldon Wheeler from the Maine Department of Health and Human Services presented examples of innovative strategies to give adults with autism better housing options such as individualized housing, homeownership, positive social environments, and housing modifications. Lisa Crabtree of Towson University and Julie LaBerge of the Bonduel School District in Wisconsin described peer support programs creating positive relationships and raising autism awareness in their schools. Jim Sinclair, co-founder and coordinator of the Autism Network International, described the advantages of people with autism providing peer support for others with autism.

Highlighting the need for streamlining the many service agencies within each state, John Martin from the Ohio Department of Developmental Disabilities discussed strategies for integrating government systems that provide autism-related services.

The subcommittee, as well as members of the IACC, had the opportunity to ask speakers questions about the most effective ways to build a more efficient system of services and supports. It was an information-packed day that fostered interesting discussions and several recommendations for achieving this important goal. Links to the speakers’ presentations are expected to be posted on the IACC website next week.


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