Health Care Reform and Autism Coverage: Some Holes, Notes Autism Speaks

Autism Speaks, a major advocacy group, has a helpful post explaining some details of the health care reform bill signed this week by President Obama. In essence, the group praises the direction of the health care policy embodied in the bill and cites some direct benefits for families who are seeking services for people with autism. But the article also notes there are holes in specific coverage options, and cites these holes as reasons to continue to seek reforms.

On the plus side: the new law will end the practice of insurance companies denying benefits based on pre-existing conditions, including autism spectrum disorders. But the law won't mean that insurers must provide behavioral services such as Applied Behavior Analysis. From the article:

Not all insurance plans will be required to cover behavioral health treatment. That’s because only certain types of health plans will be required, beginning in 2014, to cover the list of essential benefits, including behavioral health treatment. The types of plans included under this provision are: (1) plans offered by state-based exchanges, through which individuals and small businesses can purchase coverage; and (2) plans offered in the individual and small group markets outside the exchange. Existing coverage, plans offered in the large group market outside exchanges, and self-insured plans (plans under which an employer assumes direct financial responsibility for the costs of enrollees’ medical claims, or sometimes referred to as “ERISA plans”) will not be required to provide the essential benefits package. This last exception is especially significant because 57% of workers who are currently covered by their employers’ health benefits are enrolled in a plan self-insured by the employer.

See the article by clicking here: Health Care Reform: What does it mean for the Autism community?

The White House has links to information about the health care law and a link that leads you to the text of the law known as H.R. 4872, Health Care and Education Affordability Reconciliation Act of 2010.

Autism Readings, Resources from Around the Web

I found these articles, resources and related items of interest for families of kids with autism spectrum disorders. I have found the web application Twitter to be a useful way to share interesting items online (at a higher frequency rate than I recently have been able to post articles on this blog). Below are links to the items, which you can also find at Twitter.com/autismbulletin. Below is a sampling from the past two weeks:

1. Autism Society of America: copy of E-mail newsletter
   
   
2. Autism Society of America: national conference, St. Charles, Ill., July 22-25
   
   
3. President Obama includes funding for autism in his FY 2010 budget proposal, via Autism Speaks - read more here
   
   
4. Alabama Autism Task Force report, recommendations here.
   
   
5. Agenda for Flutie Foundation for Autism conference April 7 in Norwood, Mass., read here.
   
   
6. Easter Seals campaign: Urge Congress to support families living with autism today: read here.
   
   
7. New from Newsweek: Autism: How Childhood Vaccines Became Villains
   
   
8. Toronto Jewish community holds disability awareness and inclusion events.
   
   
9. U.S. National Institute of Mental Health say stimulus spending to be guided by this strategic plan: read here.
   
   
10. Autism Speaks calls for $200 million for National Institutes of Health autism funding from U.S. stimulus package
    
    
11. RT @UKAF: The London Guardian recently featured the UK Autism Foundation.
    
    
12. Nevada considers autism insurance bill, news item via KRNV.com
    
    
13. Latest edition of Positively Autism newsletter with ABA-related articles.
    
    
14. New Hampshire Walk for Autism has set up website for event Oct. 4, 2009
    
    
15. From Change.org, college programs for autistic students
    
    
16. Wrightslaw newsletter on special ed funding in federal stimulus package
    
    
17. Autism insurance coverage advocates in Kansas continue to press case in state legislature
    
    
18. Autism programs take a hit, Boston Globe article on special ed budgets
    
    
19. Mass. events calendar for families with special needs kids
    
    
20. A journey of love and discovery as sibling of an autistic sister, from Portland Oregonian newspaper
    
    

Massachusetts Considers Autism Insurance Bill

The Massachusetts Legislature is taking up a bill that would require private healthcare policies cover autism services such as Applied Behavior Analysis, physical and occupational therapy, diagnostic and other services. You can see a copy of House Bill 67 below. Rep. Barbara A. L'Italien, a Democrat from Andover, and Senator Frederick Berry, a Democrat from Peabody, introduced the bill earlier this month.

Advocates from AutismVotes.org, an initiative of the advocacy group Autism Speaks, have set up a website for this Massachusetts initiative. It's one of several efforts around the country to raise awareness of the issue of autism insurance, and to press for increased coverage.

The autism insurance issue has been a key legislative effort for autism advocates for quite some time. As awareness about the prevalence of autism spectrum disorders has increased, so have calls for ways to help families who are thrust into finding ways to help their children, with early intervention services and special education programs. (Calls to help young adults and adults have not been as loud, but one can anticipate they will grow as the cohort grows and matures.)

In state after state (see Autism Bulletin archives for articles on South Carolina, Texas, Pennsylvania and other states), the battle shapes up to be one where families and advocates point out the need for services and the health insurance industry argues the cost is too high. Massachusetts is among those states where we can expect to see that conflict play out this year.

Below are two documents (e-mail readers will see links, and blog visitors should see an image of the documents embedded in this article). The first document is a copy of House Bill 67, which calls for insurance coverage for autism services. The second document is an Autism Speaks advocacy paper, prepared in 2007, outlining the reasons for supporting this type of legislation.


MA HouseBill 0067_001 - As Introduced Jan 2009

Publish at Scribd or explore others: Government Business & Legal autism autismbulletin.blogs

Below, find the Autism Speaks document that lays out an argument in favor of autism insurance coverage.

Arguments for Private Insurance Coverage

Publish at Scribd or explore others: Politics & Governmen Presentations & Slid autism autismbulletin.blogs

Autism Advocates Scheduled to Meet with Obama Transition Team

A small group of autism advocates are scheduled next week to discuss disability and health care policy with President-elect Barack Obama's transition team, according to one of the advocates invited to the event.

Ari Ne'eman, president of the non-profit organization Autistic Self Advocacy Network (ASAN), has communicated with other advocates for people with autism that he was invited to speak with members of Obama's team, and said he seeks input from others in the community. In an e-mail message distributed by The Autism Acceptance Project, Ne'eman, wrote:

Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I'd like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We've been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you.

The Autistic Self Advocacy Network is based in Washington, D.C., and was founded by Ne'eman, who explains in his website biography that he's a student at the University of Maryland-Baltimore County. Ne'eman, who has been diagnosed with Asperger's, runs this group along with others with autism spectrum disorders. The group's website notes: "ASAN's public policy initiatives involve advocating for greater support and understanding for adults and children on the autism spectrum."

What priorities would you advocate? Here's the contact information for Ari Ne'eman via e-mail: aneeman@autisticadvocacy.org.

Also see:

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

Watching Obama's Stimulus Package and How States Receive Federal Aid

President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.

While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.

In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.

Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:


Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.

What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.

If you have information about goings-on in your state, please feel encouraged to post a comment below this post.

Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.

President-elect Obama and governors tackle the economy @ Yahoo! Video

Why This Parent of a Special Needs Child Is Voting for Barack Obama

There have been a number of essays and editorials about the presidential race, considering in depth the positions of Republican John McCain and Democrat Barack Obama, which I would recommend: The New Yorker and The Los Angeles Times are two that endorse Obama which clearly lay out the case—in general, for a change in direction for the United States, and specifically for Obama's leadership.

I cite those examples for two reasons: First, I don't decide whom to support based on one issue, whether it be autism or something else. And second, this blog post is going to hit just a few highlights. Still, when it comes to this blog's readers—mostly parents and family members of people with autism spectrum disorders—there are several reasons to add Autism Bulletin's voice to those supporting Barack Obama for president, and Joseph Biden for vice president:

1.) The Role of Government in Our Lives

No one I have met in this journey as a parent of a special needs child plans to use government services more than anyone else. We became parents, and then we learned that we had a special needs child. It happened, and most of us have learned that no matter how hard we try, we need help. It's not our fault we need help, but we do.

The government can help, in many ways: through the work of educators teaching our children new skills, in early intervention programs, in school settings and at home; through supporting healthcare programs that augment those school- and home-based services; for autistic adults who require support to live in our communities.

We're in tough economic times, certainly, and it is difficult to imagine a great expansion of social services in the coming years. But listening to Obama and McCain during the campaign, the conventions and the debates, it is clear to me that a Democratic administration would be better for our kids and our families.

I say this having heard the pledge by Sarah Palin, the Republican vice presidential nominee, to be an advocate for special needs children in the White House. But I have trouble reconciling that pledge with a historic position by the Republican Party to want to eradicate the Department of Education. I have trouble seeing how a Republican administration would support government research dollars going to help people with autism, when John McCain promises to cut spending across the board. (I also recall stories like that of Mike Bernoski, a parent who was thrown out of Republican Joe Barton's Congressional office when Bernoski sought to discuss the Combating Autism Act.)

And, more importantly, it's clear that Obama has both education and social services at or near the top of his agenda. When he has to make tough choices, he has indicated that he will prioritize education and healthcare goals. He is a better choice.

2.) The Healthcare System in America

Advocates for people with autism spectrum disorders have done heroic work in recent years around the country, state by state, to win more health insurance coverage for our families. There's more work to be done.

John McCain's healthcare proposal seeks to apply free market principles to the nation's healthcare system. It would allow people to shop for health insurance across state lines, which leaves in doubt state governments' requirements to cover citizens according to state laws. At the least, it would appear to undercut the role of states and appears to threaten the gains the advocates for our families have won.

In a market-based model, there are always winners and losers. The question then comes up: what role will the government play when people all over the nation, including people with disabilities, are losing?

During the debates, a moderator asked the candidates whether healthcare in their view was a right or a responsibility. McCain said he sees healthcare as a responsibility. Obama said he sees healthcare as a right for all Americans.

I have read and heard media reports which suggest Obama's healthcare plan projections are rosy, that they won't work exactly as he says by expanding the existing employer-based system, and that the economic meltdown will throw his plans off track. Those points make sense. But I come back to the principle: Obama is right that our government needs to find ways to care for everyone. McCain is wrong to trust the market to solve the problem.

3.) The Role of the Courts

Parents of disabled children have brought cases to the federal courts, seeking for example, the right to advocate for an autistic child when they can't afford a lawyer. We should expect more cases, as questions about what our society should do to treat people with disabilities, to allow them to live, learn and work in our communities and nation as full participants.

The president's right to appoint judges, to the Supreme Court, and to other federal benches, is another reason I am supporting Obama. I trust him to appoint judges who will be open to the fact that in today's America, we face issues, challenges, medical conditions and disabilities that require careful consideration and fair treatment.

4.) Awareness Is Not Enough

I have been astonished by the degree to which politicians have mentioned autism during this campaign. John McCain, Barack Obama, Bill Clinton, Hillary Clinton—each has spoken about it, citing the need to support families dealing with its challenges. It feels like autism advocates have won an important awareness battle.

But awareness is not enough. It's not enough to say you know about the problem. You have to be willing to do something about it. Obama's domestic priorities of education and healthcare come closest to addressing the issues that parents of kids with disabilities face.

No one, especially in these uncertain economic times, can predict what is going to happen. But after listening to these candidates, studying their histories, watching how they conduct their campaigns, noting their choices of vice presidential nominees, advisers and prominent supporters, I have concluded that Barack Obama is the best choice for president: for our country, for our families, for our future.

Letter to Autism Bulletin: A Window into Autism Services in North Carolina

Dr. Mark Carroll is president-elect of the North Carolina chapter of the American Academy of Child and Adolescent Psychiatry. Dr. Carroll wrote to share some of his observations about the autism services needs of people in his area near the Blue Ridge Mountains after reading an article I wrote called "Understanding Autism Spectrum Disorders" (see the article here, and a short synopsis here).

Dr. Carroll said the North Carolina Council of Child and Adolescent Psychiatry, is pursuing a new advocacy initiative this year to raise awareness about the need to better serve people with autism spectrum disorders. He gave me permission to publish his letter while emphasizing that the views are his alone, not those of his group. (Note: TEACCH is an approach to delivering autism services that stands for Treatment and Education of Autistic and related Communication-handicapped Children.) Here is the letter:

I am a child and adolescent psychiatrist practicing
community psychiatry mainly in the rural communities
from Winston-Salem, N.C., northwest to the Blue Ridge
Mountains. We are fortunate to have a Developmental
Evaluation Clinic at Wake Forest University and a
TEACCH office in Greensboro.

Still, most of the local treatment options for autism are in our
schools. The state has a Community Alternatives
Program for developmental disabilities and for
autism, but it has become underfunded with a waiting
list of up to seven years. Many families have no
services at all once the school day is over. Our
state has been privatizing mental health services,
meaning that employers are smaller and more fragile
with a resultant "brain drain." There are fewer and
fewer therapists and skilled workers. For the past
ten years, I have been the lone child and adolescent
psychiatrist serving two counties with a combined
population of nearly 150,000.

Those of us providing professional mental health
services try to keep up hope. There is an election
for governor this year, and a new website
www.votencmentalhealth.org designed to inform voters
about candidates and mental health issues.

As you might imagine, it has become a challenge
helping families sort out information when the
internet can seem so much more accessible than local
professionals who may seem not only busy but spread
so thinly. I plan to refer families to your blog,
hoping they will find it to be a balanced and
helpful resource. Who knows, you may even get an
e-mail or two.

Thanks again for your interest and dedication.
Regards,
Mark B. Carroll, M.D.

Another Source for Presidential Campaigns and Autism Policy

The Autism Society of America has assembled some more references to the candidates' statements on autism spectrum disorders and government policies.

You can find that website page here.

Also see:

• Obama Unveils Disabilities Plan

• Autism Issue Makes Ripple in Presidential Campaign as Clinton Promises to Spend $700 Million Per Year

Obama Unveils Disabilities Plan, Includes Autism in Agenda; Other Notes for Super Tuesday Primaries

Sen. Barack Obama's presidential campaign on January 29 held a teleconference to highlight the Illinois democrat's agenda for Americans with disabilities. You can find more information here, including a short video from Obama in which he specifically cites the need to screen children around age 2 for autism.

You can find Obama's nine-page position paper on helping Americans with disabilities is on his website here.

Obama's platform on disabilities integrates autism supports into overall plans to provide universal healthcare coverage for, better educational services through full funding for the Individuals with Disabilities Education Act. It also includes incentives for employers to hire people with disabilities and plans to support community-based residential options for people who can't live on their own. Interestingly, it includes an explicit pledge to appoint federal judges who are sensitive to the needs of disabled citizens.

Near the end of the position paper, at the bottom of page 8, comes this statement about autism:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama believes we need to research treatments and search for the causes of ASD. He has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Obama believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. Obama will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. Obama will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program - a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

As the field of presidential candidates shrinks—Democrat John Edwards and Republican Rudy Giuliani bowed out this week—it's notable that the two major Democrats left in the race, Sen. Hillary Clinton, and Obama, each have issued important pledges of support for people with autism. More coverage on Clinton's autism advocacy is below.

I have been looking for coverage or position papers by Republican candidates related to autism, but have failed to see anything from the campaigns of Mitt Romney, Mike Huckabee or Ron Paul. The group A-Champ (Advocates for Children Affected by Mercury Poisoning) has issued a statement hailing Sen. John McCain of Arizona for requesting a Senate hearing on autism including the issue of mercury in vaccines.

If you know more about where the Republican stand on this issue, please post a comment here.

Autism support is an issue for parents and family members of people with autism to think about when they vote for president, according to a poll posted here on December 17. More than half of those who participated in the survey identified autism services as the most important issue influencing their vote—ahead of the Iraq war, the economy, and education. It's a small, self-selected sample, but interesting for what it's worth.

Also see:

• Where Do Autism Services Fit Into Your Views on the Presidential Race?

• Autism Issue Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year

• Autism Bulletin's 2007 Advocates of the Year

Top Stories on Autism Bulletin in 2007

Here is a list of the top 10 stories on Autism Bulletin as measured by readers' interest:

1. Map of State Autism Insurance Laws

2. Texas Governor Signs Autism Insurance Bill

3. 17 States Require Some Insurance Coverage for Autism, Recent Survey Finds

4. Autism Schools Map Project

5. Colorado Passes Early Intervention Plan that Applies to Autism

6. New Florida Autism Charter School Opens in Tampa

7. MTV's "True Life" Features Teens with Autism

8. Texas Lawmakers Pass Bill to Cover Some Children's Autism Services

9. Wisconsin Governor Calls for Autism Coverage

10. Nick News Focuses on Autism


The top five "Labels" readers researched on Autism Bulletin in 2007:

1. ABA

2. Autism Services

3. Asperger's

4. Health Insurance

5. Legislation

Source: Google Analytics

Government Panel Seeks Input on Autism Research Priorities

What should the nation prioritize to advance research on the treatment of autism spectrum disorders (ASD)? On the diagnosis of autism? Risk factors for autism? The biology autism? Or other areas?

The National Institute of Mental Health has issued a request for information to members of the autism community asking for information on what community members believe should be the priorities for autism research.

The deadline for submitting information is January 4, 2008. The Interagency Autism Coordinating Committee established by the Combating Autism Act of 2006 will use the input to develop a strategic plan. The request is aimed at people with autism spectrum disorders, their families, advocates, scientists health professionals, therapists, educators, state and local programs for ASD, and the general public.

You can read the request for information here. An excerpt from the document explains:

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

• Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.
• Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.
• Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.
• Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.

The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Send your ideas to the Interagency Autism Coordinating Committee at iacc@mail.nih.gov. Please read the guidelines before doing so, such as the need to mark proprietary information and the requested two-page limit for comments.

Also see:

* Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

One theme of the Combating Autism Act of 2006 was to do more to coordinate federal government efforts on autism research and diagnostic screening along with autism services and education programs. Following this directive, Mike Leavitt, the Bush Administration's secretary of Health and Human Services, on Nov. 27 announced 19 appointments to the government's Interagency Autism Coordinating Committee.

The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.

While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)

The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.

Four Parents, One Autistic Adult Appointed to the Committee

The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:

Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.

Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.

Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."

Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.

Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Government Officials on Committee

Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:

Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.

James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.

Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.

Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.

Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.

Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.

Notes on This Panel from the Combating Autism Act

The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:

In carrying out its duties under this section, the Committee shall—

(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;

(2) monitor Federal activities with respect to autism spectrum disorder;

(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);

(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and

(6) submit to the Congress such strategic plan and any updates to such plan.

Related Stories on Autism Bulletin:

CDC Director Cites Autism as Urgent Concern

Bush Signs Combating Autism Act

National Institutes of Health Reorganizes Autism Research Program

Federal Research Grants Shows Intensified Effort to Find Autism Clues, Treatments, NIH Says

Autism Issue Makes Ripple in Presidential Race As Clinton Promises to Spend $700 Million Per Year

Sen. Hillary Clinton of New York, a front-runner in the race for the Democratic presidential nomination, last week issued a plan to help children and families affected by autism. The plan calls for spending $700 million per year to expand research, identify treatments, expand access to services for children and adults with autism spectrum disorders and provide autism-specific training for teachers.

While some other candidates do address autism in their campaign literature and remarks (read on below), Clinton's proposal is the most detailed of any of the major presidential candidates I could find, and follows her filing a bill in March 2007 with Republican Senator Wayne Allard of Colorado to increase access to support services for Americans with autism. (See "Senators Clinton and Allard Unveil Proposal to Expand Autism Services," in the Autism Bulletin archives.)

You can read a press release about Clinton's plan here. Both the Clinton-Allard bill and this plan—issued during this white-hot period leading up to the Iowa causes and New Hampshire primary in early January—include similar ideas around the same broad themes: expanding access to autism services for people who need them, from children to adults; spending more to understand what happens when someone has autism and why diagnoses are on the rise; generating more consensus around evidence-based effective treatments for autism.

Notably, Clinton calls for providing grants to states to increase programs and services for adults.

What Other Candidates Are Saying About Autism

A number of candidates who serve in Congress have records on autism that relate to the landmark 2006 passage of the Combating Autism Act, which received broad support. In fact, Sen. Christopher Dodd, a Connecticut Democrat, was the co-sponsor of the Senate version of the bill. You can read more about his work on that law here and see more coverage of that landmark law here.

Dodd and other Democratic candidates including John Edwards, the former North Carolina Senator and vice presidential candidate; Sen. Barack Obama, Democrat of Illinois, and New Mexico Gov. Bill Richardson, include their ideas about helping people with autism in their health care reform plans. Some quotes follow:

From the John Edwards campaign blog, Nov. 26:

We need to find the causes so we can help protect our children. The National Institutes of Health have concluded that childhood vaccines are not the cause, but many families are not convinced. As president, I will double funding for autism research, issue an all-hands-on deck challenge and follow the results wherever the science takes us.

We also need to take better care of children affected today. My plan for universal health care, guaranteed coverage of autism care in Medicaid and private insurance, and better investments in special education and home health workers will assist families to support and treat children with autism and help children, and adults, reach their full potential.

We should also invest more in recruiting, training and paying sufficiently teachers, therapists, psychologists and others working in the special education field. It's time to finally get on a path to fully funding special education.

From the Barack Obama campaign's health care plan:

Support Americans with Autism. More than one million Americans have autism, a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of autism have been recognized across the country. Barack Obama believes that we can do more to help autistic Americans and their families understand and live with autism. He has been a strong supporter of more than $1 billion in federal funding for autism research on the root causes and treatments, and he believes that we should increase funding for the Individuals with Disabilities Education Act to truly ensure that no child is left behind.

More than anything, autism remains a profound mystery with a broad spectrum of effects on autistic individuals, their families, loved ones, the community, and education and health care systems. Obama believes that the government and our communities should work together to provide a helping hand to autistic individuals and their families.

From Bill Richardson's health care proposal:

First of all I am for strongly increased research on autism. The number of children in this country affected by autism is just staggering. [1 in every 150 children] Comprehensive and universal access to health care is part of the solution. I fought for increased funding in New Mexico for outreach, education, treatment and awareness. This is something that I have been talking about on the campaign trail everyday and it will be a priority in my administration.

From Christopher Dodd's health care plan:

Under the Dodd Plan, every child in America will have guaranteed health insurance equivalent to the health coverage Members of Congress have for their children. All children will have access to preventive health screenings including vision, hearing, autism, and other neurological disorders.

Where Are The Republicans?

I researched the online campaign literature and recent press coverage for Mike Huckabee, the former Arkansas governor; Sen. John McCain of Arizona, Rep. Ron Paul of Texas, and former Massachusetts Gov. Mitt Romney. With the exception of a haircut fundraiser that Huckabee attended for autism in New Hampshire, and a Romney campaign volunteer in Colorado who has done some charity work for autism, I couldn't find a mention of autism anywhere.

That doesn't mean it's not there, so if you know of someone in any of these campaigns, write to me or submit a comment at the end of this post. It could just mean that autism hasn't risen to any level of importance in the Republican race. Health care is present, though. Mitt Romney is running on his bringing health coverage to all in Massachusetts. Ron Paul is a doctor. In the past, Mike Huckabee has been on a mission to make citizens lose weight.

Noted: I couldn't find anything on the websites of two other Democrats, Sen. Joe Biden of Delaware and Rep. Dennis Kucinich of Ohio.

Haircut Footnote

Four candidates have taken up a "$400 haircut challenge" for charity, from the father of an autistic child in New Hampshire. Here's an item from the Autism Society of America's website:

Representative Dennis Kucinich made a campaign stop for autism on November 20. The presidential candidate, a democrat from Ohio, was the third politician to take up New Hampshire hair stylist David Holden on his challenge to get a $400 haircut with all proceeds going to ASA.

Though the challenge was inspired by candidate John Edwards’ high-end haircuts that appeared on campaign statements in April, Holden said the challenge isn’t meant as a dig just an opportunity to help a good cause. Holden is the owner of Hair Biz salon in Concord, and the father of a 12-year-old with autism.

Kucinich is the third to take up the challenge. Representative Tom Tancredo of Colorado and former Arkansas governor Mike Huckabee have also participated.

Also see:

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

President Bush today vetoed a bill that autism advocates say would have increased funding for autism research, data collection on autism diagnosis studies, and provided more awareness and training for professionals working with autistic students. Some autism advocates are calling on Congress to override the president's veto.

The money involved—$1 million at the National Institutes of Health for research, $16.5 million at the Centers for Disease Control for the population studies, and another $37 million for awareness programs—is a relative pittance when compared with the billions of dollars in disagreements you're about to read in the quotes from government leaders that follow. It demonstrates how difficult it can be to get federal funds appropriated for a cause that just a year ago enjoyed wide bipartisan support, when Bush signed the Combating Autism Act into law.

These autism-related items are part of a much larger spending bill that also pertains to education, health and anti-poverty programs.

Partisan Bickering—and the Iraq War

Bush issued a statement saying the domestic spending proposal from Congress, called the Labor, Health and Human Services and Education Conference Report, costs too much and contains too many "earmarks," spending provisions for projects in local Congressional districts. The president's statement said: "This year, the Congress plans to overspend my budget by $22 billion, of which $10 billion is for increases in this bill. Health care, education, job training, and other goals can be achieved without this excessive spending if the Congress sets priorities."

Leaders of the appropriations committees in the House and Senate, both Democrats, sought to point out the relative low cost of the programs designed to make Americans' lives better, compared with the mounting cost of the Iraq war and Bush's tax policies.

Rep. David Obey, D-Wisconsin, chairman of the House budget panel, issued this statement:

“The same President who is asking us to spend another $200 billion on the misguided war in Iraq and is insisting on providing $60 billion in tax cuts next year to folks who make over a million bucks a year, is now pretending to protect the deficit by refusing to provide a $6 billion increase to crucial domestic investments in education, healthcare, medical research and worker protections that will make this country stronger."

Senator Robert Byrd, D-W. Virginia, chairman of the Senate appropriations committee, issued a similar statement, urging the White House to return to negotiating with Congress on the budget.

Autism Society Calls for Veto Override

Since the Bush White House has not developed a reputation for negotiating with Congress, it is not surprising that advocates at the Autism Society of America are urging its membership to contact their representatives in Congress to override the president's veto.

Here's an excerpt from the argument the society is encouraging autism advocates make to their members of Congress urging them to override the president's veto:

This important legislation would provide significant increases for autism research, public awareness, early intervention and education. Specifically, the measure calls for:

* A 3.1 percent increase in research at the National Institutes of Health, a portion of which can be used to expand, intensify and coordinate research into the causes, diagnosis, early detection, prevention, services, supports, intervention and treatment of autism spectrum disorders. This includes $1 million to reinstitute the Inter-Agency Autism Coordinating Committee.

* $16.5 million for the CDC's Disabilities Surveillance and Research Program, which supports data collection, analysis and reporting, so that we can better understand the scope of the autism epidemic.

* $37 million to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism and train professionals to utilize valid and reliable screening tools to diagnose autism and provide evidence-based interventions for children with autism and other developmental disabilities.

These important increases will ensure that research into improved treatments and interventions can be explored, and that children with autism are diagnosed earlier, can access early intervention services, and are able to receive a quality education.

President Bush's veto seriously endangers our ability to diagnose, treat and serve individuals with autism and their families.

"Combating Autism Act" Funding Caught in Legislative Wrangling; Bush Veto of Research, Awareness Dollars Possible

Millions of dollars in federal funding for scientific research into autism spectrum disorders and for public awareness campaigns is caught up in an ongoing budget battle between Congress and President George W. Bush, who has threatened to veto the spending bill in which these autism provisions are included.

That's the news in an important legislative update provided by the Autism Society of America, a major autism advocacy group based near Washington D.C. You can read a copy of the update at the society's website by clicking here.

The big picture here is that President Bush has decided, in the last part of his second term, to hold the line on domestic spending programs. A November 6 press release from Rep. David Obey, the Wisconsin Democrat who chairs the House Appropriations Committee, outlines how the Bush Administration and the Democrats in the House view a series of labor, health and education issues. Not surprisingly, the Iraq war plays into the politics of the situation. This is the way the introduction reads on Obey's press release:

WASHINGTON - Even as the President is asking for nearly $200 billion to cover the $10 billion a month we are spending in Iraq (paid for with borrowed money), he is trying to masquerade as fiscally responsible by manufacturing a fight over what we spend in roughly 2 months in Iraq ($22 billion) in investments that will make this a stronger and better country.
At the center of that fight is funding for the Departments of Labor, Health and Education. The conference report considered in the House today provides $150.7 billion, $6.2 billion (4.3%) above 2007 and $9.8 billion above the President’s request (roughly the cost of 1 month in Iraq) for the Departments of Labor, Health and Human Services and Education.
What would that $9.8 billion achieve? Here are some specific examples.

Obey's statement goes on to outline the differences between the White House and the majority in Congress on issues including health care, job training, education, poverty programs and medical research. Obey notes that the House wants to spend more money on all of these programs and Bush wants to cut them, including special education funding under the Individuals with Disabilities Education Act (IDEA).

It is the medical research section that the Autism Society says advocates for people with autism should watch closely. The bill for Labor, Health and Human Services spending "provides $37 million for autism public awareness and early intervention—a $17 million increase over last year, as mandated by the Combating Autism Act of 2006," the Autism Society notes, and adds:

The bill also appropriates $16.5 million for the Centers for Disease Control and Prevention to use toward surveillance and research and $1 million to reinstate the Inter-Agency Autism Coordinating Committee, which would develop a strategic plan for autism research at the National Institutes of Health.

President Bush has vowed to veto the bill because it asks for $9.8 billion more than his budget proposal. Unfortunately, there is not a veto-proof majority in either chamber, so additional negotiations will be needed.

This would be one of those times when it pays to be an engaged citizen. It would be worthwhile to educate yourself about where your House member and Senator stand on this funding bill. Because of Bush's staunch veto threat, it would be especially interesting to go through this effort if you have Republican representation in Congress, because those are the votes in the House and Senate which would be tougher to get if a veto override vote becomes necessary. Let's hope it doesn't.

Also see:

* Bush Signs Combating Autism Act

* More Autism Bulletin stories relating to Congress

Ohio House Takes Up Autism Health Insurance Bill

The Ohio House of Representatives is considering a bill that would prohibit health insurers from excluding insurance coverage for autism services.

The bill is called H.B. 170, which you can read via the state legislature's website by clicking here. Representatives Jon M. Peterson, a Republican, and Ted Celeste, a Democrat, are co-sponsors of the bill. The bill, introduced in April 2007, does not spell out what kinds of services are covered. According to the legislature's website (which warns that it not to be considered an official record), the bill has been resting with the House insurance committee.

The Associated Press published a story Nov. 8 that summarizes a pattern of activity which advocates for autism services will recognize: a growing awareness that autism services for young children can cost families tens of thousands of dollars a year; health insurance doesn't cover any of it; bipartisan support in the legislature generates a bill to change matters; and a health insurance industry representative oppose the idea. It's a pattern that has played out in several states, including Texas (passed), South Carolina (passed) and Pennsylvania, which as I understand it is still pending. (See past Autism Bulletin articles labeled "health insurance" and an autism insurance map for more background on states around the country.)

In Ohio, the Associated Press lays out two views of the debate by quoting an insurance industry representative, who suggests that autism is another in a list of causes some people would like to see insurers cover; and a provider of autism services, who relays the argument that investing in these services has a long-term return:

Insurance officials are concerned the bill would lead to more mandates based on a disease or health condition.

"Each individual has the belief that their cause is the one that the government needs to find the solution to," said Kelly McGivern, president of the Ohio Association of Health Plans. "We believe employers who buy policies should make the decision."

Continuing treatments, involving such things as speech therapy, a psychologist working on socialization skills and home health aides, aren't covered, said Jacquie Wynn, director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital.

Autistic children, she said, need 30 hours to 40 hours of intervention a week. Wynn said 30 percent of families who come to the center for treatment leave because they can't afford it.

"There's a cost savings in the reduction of aggressive behavior or the self-care skills they learn," she said. "With short-term, early intervention in their early years, you see the payoff in their lifetime."

California Autism Commission Prepares Legislation for 2008; Recommendations Cover Health Insurance, Education, Services, Awareness, Diagnosis

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."

Also see:

* Autism Bulletin articles relating to health insurance

* House Bill Calls on Congress to Establish Autism Education Task Force