More on Colorado Autism Insurance Case: Q&A with Tappert Family's Lawyer

R. Craig Ewing is managing partner at Ewing & Ewing, the Englewood, Colorado law firm which represented the Tappert family, who recently won an arbitration case for their health insurer to cover autism-related services for their young daughter Abby. Mr. Ewing last month agreed to respond to some questions I sent him via e-mail.

You can read more about the case in this article: Colorado Family Wins Insurance for Autism Services. A related article cited in the transcript below is here: After Colorado Arbitrator's Decision, More Information About Lovaas Model of Applied Behavior Analysis.

A key issue in this case was that the arbitrator's finding that Applied Behavior Analysis (ABA) is not an experimental therapy, but in fact an early intervention best practice for children with autism spectrum disorders—and a service the insurer should cover. With advocates around the nation seeking to win support for legislation expanding such insurance coverage, Mr. Ewing suggests this arbitration decision could shed some light on what it takes to win support from organizations who may seek to deny such benefits.

The following is a transcript of his responses to questions:


1. How important is the arbitrator's decision?

We believe that the arbitrator's decision is quite important in that it recognizes that ABA therapy is medically necessary when children with autism engage in self-injurious behaviors. We also believe that it casts doubt on many other insurer's medical policies (also known as clinical guidelines) that equate all forms of ABA therapy with "Lovaas therapy."

I note with interest the letter from Scott Cross and Vincent J. LaMarca, BCBA on your website [see the letter here]. The arbiter's comments regarding Lovaas therapy are based upon the expert testimony of Dr. Phillip S. Strain and his review of Anthem's medical policy. I am attaching Dr. Strain's affidavit as well as Anthem's medical policy for your review. As you will note in reviewing the same, Anthem (as well as many other insurers) deem ABA therapy to be experimental and investigational because of the scientific criticisms of Dr. Lovaas' research. Thus, it is important to distinguish pivotal response training and other forms of ABA therapy from "Lovaas therapy" in order to defeat the rationale advanced by many insurers.'

To the extent it is not confidential, I am very interested in sharing the information I gleaned through discovery on the Tappert case with Mr. Cross, Mr. LaMarca and others at the Lovaas Institute for the purposes of working with them to rebut the position taken with respect to Lovaas therapy by many insurers/third party administrators in the United States.

I am also enclosing United Healthcare's medical policy. As you will note, it relies on the criticisms of Dr. Lovaas' research as a basis for deeming all forms of ABA therapy "experimental and investigational."

2. How far-reaching might the Tappert's victory be?

The Tappert's victory opens the door for coverage for ABA therapy of the type Abby Tappert receives for Colorado residents who purchased the Anthem policy at issue. This is a major breakthrough for this subset of people.

While the Arbitration Award (opinion) is not direct legal authority in the same sense that a decision from the Colorado Court of Appeals or Colorado Supreme Court would be, it is written by William G. Meyer, a highly respected former Denver District Court judge. The opinion is thoughtful and well reasoned and no doubt it will be used by attorneys to support their clients' claims for autism coverage.

In his opinion Judge Meyer's states: "It appears both from the greater weight of the references and credible testimony that ABA therapy is the standard of care in treating autism." This statement should resonate with any judge or fact finder who confronts these issues.

3. What role did Colorado state law play in your advocating this case on behalf of the Tapperts? How does the law as it stands now in Colorado help or hinder your efforts?

The fact that the Tappert policy was not subject to the Employee Retirement Income Security Act of 1974 ["ERISA"] made the case easier with respect to the standard of review employed by the arbiter. In terms of Colorado state law, Colorado's common law that requires ambiguous terms of an insurance policy to be interpreted in favor of coverage was helpful in this case.

4. Have you been following developments in other states, notably South Carolina and Texas, that have sought to pass legislation to require insurers to cover ABA and other autism-related services? There are other states which are considering similar moves, and I am wondering if this arbitration decision gives advocates of autism services coverage any points they may use to argue in favor of their efforts?

Since becoming involved in this case, I have become very interested in the legislation regarding autism in other states. Given that approximately 1 in 150 children have been diagnosed with autism, funding for treatment must be addressed. It is my opinion that a neutral [party]'s recognition that ABA therapy is the standard of care for the treatment of children with autism may be useful to others seeking to enact legislation to require insurers to cover this expensive, but much needed treatment. I am hopeful that with more decisions recognizing the efficacy of ABA therapy, legislators will be more inclined to find ways to fund this treatment.

One last note: Mr. Ewing declined to say for publication on this blog whether he saw how insurers who study the Tappert case might try to bolster their efforts to deny coverage of ABA or other autism services.

An Indefinite Decision in Special Education Case at U.S. Supreme Court

The United States Supreme Court today issued a split decision in the case of a New York City family who sought reimbursement for their disabled son's private school tuition after rejecting a public school placement.

The 4-4 tie vote means that a lower court ruling in favor of the family stands, and that New York City will have to reimburse the family for tuition at the Stephen Gaynor School for children with learning differences in Manhattan. Only eight justices heard the case; Justice Anthony Kennedy did not take part in the case, but the court did not explain why he was excluded.

The case, Board of Education of the City School District of the City of New York v. Tom F., on behalf of Gilbert F., raises an important question in the ongoing tension between school districts and families with disabled children who disagree on how best to serve the student's needs under the law which requires every student receive a free and appropriate public education.

The question in this case: if the family and school district disagree on whether a school district can meet a student's needs, does the family have to try out the school district's plan anyway? And if the family chooses not to do so, and enrolls the student in a private school, does that action mean the family gives up its legal right to seek reimbursement for the private school tuition?

New York City's lawyer's argued yes, the student has to try out the public school program. The Freston family's lawyers argued no.

This case has received a lot of attention in the media in part because the "Tom F." in the case is a well-known businessman, former Viacom CEO Tom Freston; most media accounts have noted how Freston's wealth contrasts with the overburdened city school system.

Because the court issued only a statement that said, "The judgment is affirmed by an equally divided court," we don't know which justices sided on the Freston's side, or the city's side. Even the special education law experts at Wrightslaw.com noted in this summary of the Freston case and attorneys' oral arguments before the Supreme Court on October 1 that it appeared the court was divided on the questions in the case.

Autism Speaks was a player in the case filing a legal brief at the Supreme Court in support of Gilbert F. and his family (Gilbert F.'s disability was not identified). Every parent of a child with an autism spectrum disorder who has to go through the process of working out an Individualized Education Prorgram (IEP) knows there are options school districts and parents discuss about how to educate any given student—and little time to waste in trying out a program that might cause an autistic child to regress. An Autism Speaks statement added:

"Today the court affirmed the danger of making students try out an inappropriate school district program. Students who need early intervention do not have time to waste," said Gary Mayerson, an Autism Speaks board member and founder of law firm Mayerson & Associates. "School districts need to fulfill their statutory responsibility to create an appropriate IEP for every child with a disability or to pay for that student to attend an appropriate private school."

Autism Speaks filed an amicus brief in the case, focusing on the critical nature of early intervention for children with autism. The brief explained why parents of children with autism should not be forced to "try out" demonstrably inappropriate and ineffective IEP programs during what may well be a relatively narrow window of opportunity.

Tom Freston issued a statement today, quoted in this Associated Press article:

Freston said in a news release that he believed the Supreme Court had affirmed that "children with learning challenges have a right, without jumping through hoops, to attend schools capable of providing them with an education that truly accommodates their individual requirements."

School districts around the nation were following this case, The New York Times notes. The lead New York City Schools lawyer told the Times for this blog post that the Supreme Court's left the main questions in the case unanswered, and he hoped the court would find another case to rule on the issue in the near future.

For his part, Freston has donated reimbursement funds to the city's public schools, to help with remedial reading programs, for example.

Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

The New England Journal of Medicine published an editorial in its September 27 issue that provides useful background information on the ongoing controversy over a mercury-containing vaccine preservative called thimerosal and whether it causes autism in vaccinated children. The piece is worth reading because it asserts that a botched effort by the American Academy of Pediatrics to assure the public that vaccines are safe has led to the problems we face now: a reduction in the number of children immunized, a distrust in scientists, and lengthy court battles.

The article leads a reader to conclude that no matter how many scientific studies fail to find a causal link between thimerosal to neurological disorders (and The New England Journal publishes the latest study in the same issue), the scientific and medical establishment will continue to face questions, criticisms and doubts on this issue.

In "Thimerosal and Vaccines—A Cautionary Tale," Dr. Paul A. Offit, chief of the Division of Infectious Diseases at Children's Hospital of Philadelphia, notes that the public took little notice of an amendment in the November 1997 bill reauthorizing the Food and Drug Administration, which required the FDA to "compile a list of drugs and foods that contain intentionally introduced mercury compounds and [to] provide a quantitative and qualitative analysis of the mercury compounds in the list." Offit explains:

Eighteen months later, in May 1999, the FDA found that by 6 months of age, infants could receive as much as 75 µg of mercury from three doses of the diphtheria–tetanus–pertussis vaccine, 75 µg from three doses of the Haemophilus influenzae type b vaccine, and 37.5 µg from three doses of the hepatitis B vaccine — a total of 187.5 µg of mercury. The use of mercury in vaccines wasn't new; thimerosal, an ethylmercury-containing preservative, had been used to prevent bacterial contamination since the 1930s.

To determine whether the amount of mercury in vaccines was safe, FDA scientists examined safety guidelines from three sources: their own agency, the Environmental Protection Agency, and the Agency for Toxic Substances and Disease Registry. They found safety guidelines for methylmercury (environmental mercury), but not for ethylmercury (thimerosal). Although these two molecules differ by only one carbon atom, the difference isn't trivial. Ethylmercury is excreted from the body much more quickly than methylmercury and is therefore much less likely to accumulate. For this reason, the safety guidelines that had been established for methylmercury weren't likely to be predictive of the safety of ethylmercury.

In mid-June 1999, FDA scientists held a meeting to discuss their findings. Present were representatives from the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) — the organizations that are principally responsible for making vaccine recommendations for U.S. children. Several attendees left the meeting concerned that infants might be receiving too much mercury from vaccines. Although they were largely reassured by studies of children who had ingested large quantities of mercury from fish in their diet, they couldn't find a single study that compared neurologic outcomes in children who had received thimerosal-containing vaccines with those in children who had not.

On July 9, 1999, after much wrangling, the CDC and AAP decided to exercise the precautionary principle. They asked pharmaceutical companies to remove thimerosal from vaccines as quickly as possible; in the interim, they asked doctors to delay the birth dose of hepatitis B vaccine in children who weren't at risk for hepatitis. A press release issued by the AAP revealed the ambivalence among its members: "Parents should not worry about the safety of vaccines," it read. "The current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer. While our current immunization strategies are safe, we have an opportunity to increase the margin of safety." Critics wondered how removing something that hadn't been found to be unsafe could make vaccines safer. But many parents, frightened by a sudden change in policy, reasoned that thimerosal was targeted because it was harmful — and their faith in the vaccine infrastructure was shaken. Doctors were also confused by the recommendation.

So what does all this mean? It suggests that doctors who were in a position to give advice about the safety of vaccines faced a moment when they had to try to communicate to the public both their vigilance on the matter of mercury contained in the vaccine preservatives and to express reassurance about the safety of an essential public health vaccination program. In retrospect, it reads like a very difficult challenge to communicate both ideas at the same time.

And, Offit notes, the pediatricians made a difficult situation worse with their ambivalent words. "The thimerosal controversy should stand as a cautionary tale of how not to communicate theoretical risks to the public; otherwise, the lesson inherent in the collateral damage caused by [thimerosal's] precipitous removal will remain unlearned."

Even if you disagree with Offit's characterization that removing thimerosal from vaccines is precipitous, it's likely that you can understand why vaccines are an issue fraught with emotion and tension for the autism community searching for answers, understanding and causes for their loved one's condition.

Policy makers and the research establishment seem to understand this, too. And so the medical community continues researching the issue. You can read the abstract to the latest study, by William W. Thompson Ph.D. and 17 other researchers with CDC backing publishing a study in the same issue of The Journal titled, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" which looked at 1,047 kids and found 42 with neuropsychological conditions (without assessing whether any had autism spectrum disorders). It concludes: "Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years."

This result echoes some other studies, but the trouble is that trust is hard for some advocates to find. And the voices of parents who distrust the research establishment don't hesitate to launch critiques. Cindy Waeltermann, director of AutismLink.com, an advocacy group which has opened an autism services center in Pittsburgh, criticized the researchers for not assessing whether the 42 kids with abnormalities detected had autism, and added:

The study assessed ONLY those children who were exposed to mercury during the first 28 days to 7 months of life. The autism community has always asserted that autism is caused by a build up of mercury in the system as a result of multiple vaccinations over the first two years of life. This study did not address this hypothesis. ... The CDC, which is supposed to be the quintessential research organization of modern times has once again proven its fallibility.... This study was geared to a particular outcome before it even began.

Also see:

Vaccine Court Starts Hearing Autism Case

Scientists Raise Voices Against Autism Parents' Vaccinophobia

New Jersey Supreme Court Upholds Autism Services for Child of State Worker

The New Jersey Supreme Court has ordered a state health insurance plan for state government workers to pay for autism-related services for the young child of a state employee.

The ruling handed down on September 12 upholds an appeals court ruling from January 2007 which ordered the state's health insurance administrators to pay for services such as speech therapy and occupational therapy, illegally denied in the case of Jacob Micheletti. The court said it was illegal to discriminate against someone with autism, which the court described as a "biologically based mental illness." Read more explanation of that case Jacob Micheletti v. State Health Benefits Commission and the court decision here.

The Sept. 12 ruling, which you can find via the New Jersey courts website, is interesting because it specifically orders the state to pay out invoices for services including speech therapy, occupational therapy and Applied Behavioral Analysis/Verbal Behavior Therapy. My reading of the earlier court ruling didn't mention ABA specifically.

The ruling will have a practical impact for the Micheletti family: an estimated $35,000 per year for autism-related services for their son who is five years old, according to a story in the Star-Ledger of Newark. This figure is, of course, not new to families working to assemble a schedule of services for their young children with autism. Whether and how generally this ruling gets applied to other state workers is a matter of debate, the newspaper reports. Joseph Micheletti, a deputy attorney general for New Jersey, told the newspaper he believes the case "should give an opening to the people who really need it."

Not surprisingly, spokesmen for the state health plan administrators at Horizon, and for the state Treasury Department, made two points to the Star-Ledger:
1. Autism services are expensive and raise everyone's health insurance premiums.
2. The state believes the case will have narrow impact, and will lead to case-by-case reviews of autism services claims.

Also noted: In the recent Centers for Disease Control estimates for the prevalence of autism spectrum disorders, New Jersey led the nation at 1 case per 95 children. And New Jersey faces a financial crisis in its state employees health benefits budget, the Star-Ledger reports.

Also see:

* N.J. Court Rulings: State Workers Health Insurance Covers Autism Services

* Autism Prevalence "More Common" Than Previously Believed, Researchers Say

Parents' Lawyers Consider Action Against New York State Special Education Review Officer

A group of lawyers who represent parents and families in special education matters is considering taking legal action against Paul F. Kelly, the New York State review officer for special education cases, The Wall Street Journal reported July 24.

Why would the attorneys single out Mr. Kelly? Because in his job hearing administrative legal disputes between parents and their local school districts, Kelly rarely if ever finds in favor of the parents, The Journal reports. (The story is available only to subscribers of WSJ.com, so I can't link to it.)

The article by Daniel Golden, a Pulitzer Prize-winning reporter, uses Kelly's record as a front-and-center example of how the special education legal system sets up high barriers to parents of disabled children when there are disputes about what services a child needs to make progress in school. This issue has particular resonance for families of children with autism spectrum disorders. The rising number of diagnosed autism cases means more stresses on local school districts which need to provide a "free and appropriate education" for every student. It also means bigger challenges for those districts working to mainstream all kinds of disabled kids (including autistic kids) into regular education classrooms to both expose the students to typically developing children and (as The Journal points out) to save money.

Golden reports:

New York's Mr. Kelly is a particular target of special-education parents' anger. A study by Pamela Steen, a Patchogue, N.Y., lawyer for parents, found that he granted full or partial relief to [school] districts in 60 of their 70 appeals, or 86 percent, in 2006 and 2007. ... Advocates for the disabled have complained to Gov. Eliot Spitzer. John Farago, a City University of New York law professor and a New York hearing officer, says Mr. Kelly is "rewriting the rule book" to challenge precedents that enabled parents to put children in private schools at public expense.

As if this weren't discouraging enough, the article reminds readers that recent actions at the federal level make a steep climb steeper for parents who decide to challenge a school district's decision on educational services. The Journal reports that in 2004, Congress amended the Individuals with Disabilities Education Act (IDEA) to discourage "frivolous cases" by allowing school districts to recover legal fees from parents. And a 2005 U.S. Supreme Court ruling (Schaffer v. Weast) put the burden of proof on parents to show that a school district was not providing an appropriate education if a dispute reached the courts. (A link to the Supreme court decision is here; it and other interesting court case links are also on the Autism Bulletin sidebar, under the heading "Recent Court Decisions.")

Given these impediments, it's no wonder that, as Golden reports, the number of special education hearings nationwide dropped by 31 percent in 2005-2006 compared to the previous year. And while one school district representative in this article asserts there are fewer disputes because educational services have improved, there's no evidence provided to back up that assertion.

Also see:

* U.S. Supreme Court Affirms Parents' Rights In Case Involving Autistic Child

* A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work

Most Popular Articles on Autism Bulletin, June 2007

The top five stories posted in June 2007:

1. Texas Governor Signs Autism Insurance Bill

2. Special Federal Court to Hear Autism Case on June 11

3. A New Blog for Applied Behavior Analysis Junkies

4. South Carolina Legislature Overrides Veto to Pass Autism Insurance Law

5. Vaccine Court Starts Hearing Autism Case, and Other News Briefs


The most popular tags or "labels" for readers researching articles on Autism Bulletin this month:

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2. ABA
3. Asperger's
4. health insurance
5. legislation

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Vaccine Court Starts Hearing Autism Case, and Other News Briefs

The United States Court of Federal Claims opened its first test case into the allegation that childhood vaccines such as measles-mumps-rubella shots, or the mercury-containing preservative thimerosal, led to children developing autism. This report from the Associated Press, carried on The New York Times website, explains that the court will hear nine test cases that represent almost 5,000 other vaccine damages claims across the country.

The report foreshadows what is to come in court over the coming months: families whose children have suffered greatly will present evidence that there could be a causal link between the vaccines and their children's condition. Lawyers for the government will argue that the causation theories lack scientific research or factual evidence to support them.

For more background on the vaccine court case, and information about accessing available court records and proceedings, see this article. For The Washington Post's take on the case, see this article. And for a critique of The Post's article and some links to past research studies on the vaccine-autism issue, see this article at STATS.org, the statistical fact-checkers at George Mason University.

More on the 'Epidemic' Debate

Just in time for the court case, The Times also today published an Op-Ed that seeks to debunk the idea that there's an autism epidemic. But while the authors outline a clear thesis, their argument is not new and it's not clear what the piece adds to any public policy debate.

In "A Spectrum of Disputes," by Paul T. Shattuck, an assistant professor at Washington University's School of Social Work, and Maureen Durkin, an epidemiologist at the University of Wisconsin, report that they have analyzed mountains of data, including school records in all 50 states. They have determined that because of relatively recent rules changes (schools started counting autism cases in 1991), and because school and medical records don't necessarily match, it's possible that the nation has become better at counting autism spectrum disorder cases -- and therefore one cannot say there's an epidemic.

Read the article online, for a limited time, by going to the Times site here.

After a long discourse on their research methods and findings, the author's conclude:

We want to be very clear: our results do not mean we have nothing to worry about. Scientific and clinical advances have improved our ability to identify autistic children and to differentiate their unique needs from those of children with other types of developmental disabilities. But schools and other social service systems are unable to keep pace with these changes or give the children the help they need.

Research to discover what causes autism, including possible environmental triggers, must be a top priority. However, autism is not purely a medical puzzle — as we invest in new ways of understanding autism, we have a corresponding responsibility to invest in the capacity of our schools, medical centers and social workers to provide up-to-date treatment for those with the condition and support services for their families. In the end, we should not have to deliver a verdict on whether there is an epidemic to fulfill these obligations.

If we don't have to deliver a verdict on whether there's an epidemic, why bother with this essay, why now? Because the public's attention is focused on the vaccine court case? (The op-ed writers say they fear that the court case will drag out a debate about whether we face an epidemic.)

Do parents and advocates need the label of an epidemic to win support for better treatment options? Does the country need to see that "e-word" to sense the urgency? The article doesn't suggest a thought about this, at least not explicitly.

For more on this subject, see:

Media Picks Up "Unstrange Minds" as Hook to Debunk Cries of "Autism Epidemic"


Good Showing for Autism Documentary

"Autism: The Musical" a documentary that showcases the lives of five autistic children and their families in Los Angeles, took home an audience award at last weekend's Newport Film Festival. That's according to the director, Tricia Regan.

Regan also said in an e-mail message that HBO had agreed to televise the documentary in April 2008.

Read more about the film here.

Special Federal Court to Hear Autism Case on June 11

The online archive of documents in the "Autism Docket" at the United States Court of Federal Claims shows a list going back five years, though the claims that vaccines cause autism are older than that. This special court in Washington, D.C., set up by a 1986 act of Congress, exists to hear claims that vaccines cause injuries. On Monday, June 11 at 9 a.m., in a 450-seat courtroom, lawyers will begin presenting evidence to support their argument that the measles-mumps-rubella (MMR) vaccine, when administered with other vaccines containing the mercury-containing preservative thimerosal, cause children to develop autism. (Find information about following the court proceedings at the end of this article.)

As this piece in the June 5 edition of the legal news site Law.com explains, the so-called Omnibus Autism Proceeding is a historic legal case, a test of the 1986 law designed to reward damages to people injured by vaccines while holding drug companies who make the vaccines harmless (the government collects money for a vaccine damages fund). One reason this case is such a big deal is the scale: approximately 4,800 autism cases pending at the vaccine court, far more than any other type of injury.

A scan of some recent documents in the Autism Docket shows how difficult it can be to collect thousands of people's cases into one legal process, as the judges, or special masters as they are called, have been trying to do in this case. On Monday, the lawyers in the court will be arguing just one child's test case (that of Theresa Cedillo, in a case called Cedillo v. Secretary of Health and Human Services), and just one theory of vaccine injury (the theory that MMR vaccine+thimerosal in vaccines=autism). Other theories include MMR vaccine by itself causes autism and that thimerosal-laced vaccines cause autism, and the court expects to hear those later, according to this update published May 25 (it's a 9-page PDF file).

And as many readers will know, there have been a number of studies by government and academic researchers which have failed to find a vaccine-autism link. At the same time, strong voices like those of David Kirby, the author of Evidence of Harm, and advocacy groups such as SafeMinds.org, have emerged to cast doubts on those research efforts and the motives of the researchers and organizations involved. (See this press release, "University of Missouri Study on Link Between Autism and Mercury a Discredit to Sound Science," for a recent example. The university's own press release about its research, "Study Finds No Link Between Autism and Thimerosal," is here.)

The dueling press releases are but a symbol of the media battle that's been playing out for some time, and which we should expect to pick up in the coming days as the court session begins.

It's begun already. This piece in The Boston Sunday Globe warns Americans that the autism vaccine case, if it goes the wrong way, threatens the whole vaccine industry; the author argues that negative judgments and big plaintiff awards discourage drug makers from investing in new vaccines -- even though they don't have to pay the vaccine damages themselves. And Arthur Allen, the author of a recent book celebrating the history of vaccines, warns in this piece in Slate.com that because the special vaccine court's legal standards lack the rigor of the scientific community, it's not hard to imagine the autism plaintiffs winning big. (He also takes some proponents of the autism-vaccine link to the verbal woodshed.)

You can listen to the court proceedings for yourself, or read court session transcripts, starting June 11. Go to the court's website and register for access to a live, via-telephone, audio feed. Or access transcripts promised to be posted in a timely manner. Find information on audio feeds, and to register, click here. For other information, see this court website.

Also see:

Scientists Raise Voices Against Autism Parents' Vaccinophobia

Most Popular Articles on Autism Bulletin, May 2007

The top five stories posted in May 2007:

1. 17 States Require Some Insurance Coverage for Autism Services, Recent Survey Finds

2. Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions

3. Colorado Passes Early Intervention Plan That Applies to Autism, and More Legislative News

4. Question for Parents of Autistic Kids: How Often Do You Take a Break?

5. U.S. Supreme Court Affirms Parents' Rights in Case Involving Autistic Child


Most popular tags or "labels" for readers researching Autism Bulletin articles this month:

1. ABA
2. Asperger's
3. Autism services
4. Health insurance
5. Legislation

SOURCE: Google Analytics.

U.S. Supreme Court Affirms Parents' Rights In Case Involving Autistic Child

The U.S. Supreme Court today ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court -- without a lawyer if necessary -- so they can advocate for their child to receive a free and appropriate education.

The court's 7-2 ruling was a resounding victory for Sandee and Jeff Winkelman, who fought for the right to argue in court for appropriate educational services for their autistic son Jacob. The Supreme Court overturned a lower court ruling that said parents could not make such an argument without a lawyer who would represent their child; in other words, that parents did not have legal standing on their own under special education law, known as the Individuals with Disabilities Education Act (IDEA). Now the case goes back to a lower court which can decide the question of whether Jacob was receiving a free and appropriate education, and whether the school district of Parma City, Ohio, must repay the family for its privately paid tuition bills.

The case is called Winkelman v. Parma City School District and the decision is available online here (in a 30-plus page PDF file). Justice Anthony Kennedy wrote the decision, joined by justices John Paul Stevens, David Souter, Ruth Bader Ginsburg, Stephen Breyer, Samuel Alito Jr. and Chief Justice John Roberts. Antonin Scalia wrote a dissent, supported by Clarence Thomas, that said parents had an interest in their child's education, but not a legal right to argue in court.

The decision is important for all families in the United States who have a disabled child, and goes far beyond autism; still, this situation has a particular resonance for parents with an autistic child. It's clear from the court records, the oral arguments and media coverage of the Winkelman's case that both the paucity of autism services in the local school setting, combined with the expensive nature of what the parents saw as appropriate autism services for their son, led the family to fight all the way to the Supreme Court.

At the same time as parents like the Winkelmans felt cornered by circumstances, school districts have been arguing in court that parents have no legal standing to represent themselves in court, as this story from The New York Times tonight notes.

The Supreme Court said clearly that such arguments are wrong. The Times story also points out that a key point of the Winkelman decision cites a principle from "one of the oldest federal laws on the books, derived from the original Judiciary Act of 1789, " which provides that "in all courts in the United States parties may plead and conduct their own cases personally and by counsel."

Sandee Winkelman said in an interview with The Cleveland Plain Dealer that the ruling "is more than I could have asked for... Every parent should be celebrating today." (See that report here.)

Justice Kennedy's decision is straightforward in its explanation that Congress wrote the IDEA to give parents the right to be involved as team members who work to develop an individualized education program, or IEP, for their child, who have the right to a free and appropriate education along with their child, and who have the right to an appeals process if they feel their rights are abridged.

Also see:

Supreme Court Hears Case of Ohio Parents of Autistic Child

CDC Director Cites Autism as Urgent Concern, and Other News

Autism is an urgent priority for the Centers for Disease Control, according to director Dr. Julie Gerberding (pictured at left). Gerberding told a Senate panel on April 18 in Washington that she understands the frustrations of parents and families of people with autism spectrum disorders that there are not available "more answers about the causes and possible cures," she said, according to a report in The Atlanta Journal-Constitution (see article online here).

Gerberding also said: "The profound lifelong impact of autism spectrum disorders, tremendous costs to the affected individuals and their families, the lack of known causes or cures and concerns about the increased rates of diagnosis all make autism spectrum disorders one of our urgent realities."

The Journal-Constitution added: "Although the CDC has been criticized by some autism activists and members of Congress, Gerberding said the Atlanta-based agency is best equipped to do the surveillance and research needed to understand and respond to the disorder."

Gerberding was speaking to the Senate panel while elsewhere in Washington, The Institute of Medicine was holding a special workshop on opportunities for researching environmental triggers for autism. The Institute website said it was expecting to set up space for an overflow crowd, based on its fully subscribed preregistration process.

For a preview of this autism-environment workshop, see here.

OTHER NEWS HIGHLIGHTS: Bills in Congress

There was talk in the House this week about two bills:

Rep. Michael F. Doyle, D-Penn., filed HR 1881, an act "to improve support and services for individuals with autism and their families." Doyle, who is from the Pittsburgh area, filed the bill on April 17 with three co-sponsors, New York Democrat Eliot Engel, New Jersey Republican Christopher Smith and Mississippi Republican Charles "Chip" Pickering.

The bill would spend an estimated $350 million to improve services for people with autism and their families, according to an online report from the Pittsburgh Post-Gazette. See the report here. While the newspaper doesn't cite a companion bill in the Senate, Doyle's proposal sounds like one unveiled last month by Senators Hillary Clinton and Wayne Allard. For more on that proposal, called The "Expanding the Promise for Individuals with Autism Act," click here.

Smith told the Post-Gazette he is optimistic that President Bush will support this kind of legislation.

In another piece of legislative news, the Atlanta Journal-Constitution story cited above reported that two House members, Dave Weldon, a Florida Republican, and Carolyn Maloney, a New York Democrat, planned to reintroduce a bill they filed last year to end what they call a conflict of interest at the Centers for Disease Control relating to vaccines: that the agency is responsible for both promoting vaccines and ensuring their safety, the newspaper said. The bill failed last year.

Pennsylvania Bill Would Require Insurers to Cover Autism Treatment

At the state Capitol in Harrisburg, Pennsylvania House Speaker Dennis J. O'Brien, who has an autistic nephew, told a gathering of several hundred autism advocates that he was pursuing "legislation that would require private health insurers to cover treatment" for autism spectrum disorders, the Associated Press reported. See the report here, via CentreDaily.com. The AP's estimates suggest that when applying the latest CDC autism prevalence figures of 1 in 150 American children, that means approximately 560,000 children and young adults have autism.

Canada's Top Court Won't Hear Case Brought by Parents of Autistic Kids

A group of Ontario parents have been seeking court ordered support for behavioral therapies which in the United States is typically called ABA (applied behavior analysis) but in Canada is sometimes called IBI for intensive behavioral intervention. The Supreme Court of Canada said April 13 that it would not hear the parents' latest appeal in the case.

The Ontario Autism Coalition says on its home page that while the court would not hear the case, the advocates would continue to press for legislative relief to support these therapies under Canada's national health care plan.

Read press reports here on the court decision here in the Toronto Star and here from the Sarnia, Ontario Observer.

Also see:

Canadian Parliament Panel Urges New National Policy

Recent Autism News Headlines

Two big autism news stories topped coverage in the past couple of weeks. One was the consortium of researchers in Europe and North America reporting some new clues into the genetic makeup of autism spectrum disorders (read more about it here; this update includes a link to a National Public Radio discussion of the findings). The second was the United States Supreme Court hearing the Winkelman v. Parma case to decide whether parents can represent their disabled kids in federal court, brought by the Ohio parents of an autistic boy. (Read an explanation of the case here; this update includes a link to a transcript of the arguments before the court.)

Here is a rundown of other important and interesting developments:

The New Jersey Legislature is taking up nine bills related to autism services, with an emphasis on funds for research and adult services, The Asbury Park Press reports on March 3. See the newspaper's story here. See more background on what the lawmakers are thinking here.

The New Jersey Department of Education announced Feb. 20 that it was awarding $15 million in state grant money to 55 local school districts "to establish, expand or enhance public school programs and services for students diagnosed with Autism Spectrum Disorders (ASD)." See the state agency's press release here.

The Florida Autism Center of Excellence (FACE), slated to open near Tampa in August, announced Feb. 28 that it has set up an enrollment hot line for parents to get information about entering the new charter school, according to a press release you can see here. FACE received a $700,000 state education department grant last year to help set up the school, which is a project of Educational Services of America, Inc., a non-profit corporation that develops special education schools around the country. FACE won approval from the Hillsborough County, Fla., school board on Feb. 13, the press release states. More background on the project is available here.

A tragedy involving an autistic teenager in upstate New York has led a state lawmaker, to say he would urge reform in the way the state serves people with autism, the Gannett News Service reported on Feb. 23. A 13-year-old boy died after being improperly restrained in a van while two employees of the O.D. Heck Development Center, near Albany, ran errands for 90 minutes. The boy was a resident of the center. The two workers face second-degree manslaughter charges in the incident, the news agency reported. Sen. Thomas Libous, a Binghamton Republican, told the news agency he would file a bill to create an autism division within the state Office of Mental Retardation and Developmental Disabilities.

Researchers from Scotland published a study in the February issue of the journal Science describing their success in reversing the effects of Rett syndrome, a type of autism, in mice. The New York Times on Feb. 20 was one of several news outlets to highlight the study's results. A short and technical abstract of the paper is available here. Key take-away, as described by Times science writer Nicholas Wade: "This is a surprising result for a neurological disease. Biologists generally assume that if the brain does not wire itself correctly at specific stages of development, the deficit can never be corrected." Wade goes on to write: that the treatment for the Rett mice "would not work in people because it involved genetically engineering the mice before conception." Still, he adds, "the finding may encourage new approaches."

Researchers from the University of Medicine and Dentistry of New Jersey told The Star-Ledger of Newark they believe they found a diagnostic tool that uses urine and blood samples to detect a person's biological risk factors for autism. Read the Feb. 18 article online at NJ.com here. The researchers' tests zero in on how much fatty acids are in a person's blood and urine, and whether a certain gene called GSTM1, is present. Such a test, if successful, potentially would be a big deal because it could yield a method, other than observing and identifying behaviors, for an autism spectrum diagnosis.

Finally, in case you haven't seen it, there's Amanda Baggs, a very articulate video blogger and blogger who posted the video below on YouTube.com that explains, vividly, what her behavior -- that which many people would call atypical, and self-stimulatory -- means to her. This 8-minute video inspired CNN to profile her (see "Living with autism in a world made for others"), and attracted the attention of, among many others, the media consultant and blogger Andy Carvin (the writer of this piece which got my attention).

Update: Supreme Court Hears Case of Ohio Parents of Autistic Child

The Supreme Court today heard arguments by attorneys representing Jeff and Sandee Winkelman, who were arguing for the right to represent their son Jacob in court themselves when they ran out of money for a lawyer. The Supreme Court posted a 71-page transcript of the one-hour proceeding which you can find here. Read a preview of today's oral arguments of Winkelman v. Parma City School District here.

The case before the Supreme Court is expected to settle conflicting rulings by lower federal courts about parents' rights to represent their children under the Individuals with Disabilities Education Act (IDEA). The Wrightslaw special education law and advocacy website has good background information on these lower court decisions and other aspects of the case which you can see here.

The judges' voices come through clearly in the transcript. Justice Antonin Scalia's questions convey his skepticism that a parent can claim the rights to represent a son or daughter in court, based on the way the law is written. Meanwhile, Justice Samuel A. Alito Jr. asks the lawyer for the Winkelmans:

"How much of a practical benefit would it be for children with disabilities and their parents, if you are successful here, in light of the complexity of the IDEA and the fact that this is an area where some parents are going to have difficulty maintaining any kind of emotional detachment from the litigation?"

The Winkelmans' lawyer, Jean-Claude Andre of Los Angeles, noted that parents become "intimately familiar with the relevant law" by the time they reach court.

The Parma, Ohio School District attorney, Pierre H. Bergeron of Cincinnati argued that the child's rights under IDEA are a separate matter than the parents' rights; in his view, the court should distinguish between the two sets of people as a procedural, legal matter. That would preclude parents who are not lawyers from representing their kids in federal court because they were not representing themselves (which is permitted), but rather a separate party.

Justice Stephen Breyer posed questions that boiled down to: well, how can you separate parents from their children as a practical matter in such a legal case? When a child is a minor, with a disability? Who pays for lawyers if they can afford one in such special education cases? Who pays private school tuition or services if the child doesn't get what the family feels is needed? (It would be the parents, of course.)

The Bush administration's lawyer, David B. Salmons, assistant to the Solicitor General, argued in support of the Winkelman's view. Salmons told the court:

"Our position is that parents share in the substantive right to a free appropriate public education under the [IDEA] Act. ... The definition says that the term free appropriate public education means special education services provided, quote, without charge and at no cost to parents. We think clearly the free aspect, again, is first and foremost a right of the parents, because they're the ones that bear the cost."

A decision is expected in July.

Parents of Autistic Child Bring Ohio Case to the Supreme Court

The back story of the Winkelman family's case, headed to oral arguments before the Supreme Court on Tuesday, is not new. Jacob has an autism spectrum disorder. His Parma, Ohio school district team and his family disagree on where he should attend school; the school district said instruction in a "resource room" at an elementary school would help him learn the social skills he needed to continue his development. His family argued Jacob needed a program that specializes in services for kids with autism to make progress in his education. (Jacob, now 9, has attended the Monarch School, a specialized autism program, for most of the last four years, according to this Associated Press report published today.)

So under the Individuals with Disabilities Education Act, Jacob's parents sought legal relief to get Jacob the educational supports he need. The wrinkle here is that when they ran out of money for lawyers, Sandee and Jeff Winkelman represented their son themselves -- even though they are not lawyers.

The question before the Supreme Court on February 27 is whether, and under what circumstances, non-lawyer parents of children with disabilities can represent their child in court. (See the Supreme Court website page for the case here. Links to the briefs filed by the Winkelmans and the Parma, Ohio School District are available here, via the American Bar Association website.)

Among those filing briefs siding with the Winkelmans is the Bush administration, which argues that Congress intended to give parents the right to represent their child in federal court if needed, according to The Cleveland Plain Dealer. The newspaper's website has a good writeup of the case which you can see here.

The school district argues that it's expensive for cash-strapped school districts to have to defend lawsuits against amateur litigators. It's also possible for amateur litigators to cause harm to their child's legal rights, the district says.

Of course it's also expensive to hire a lawyer, or pay for the Monarch School's $60,000 tuition bill, as the Winkelmans argue. This passage from a good article about the case on Law.com gives good context for watching the case:

The issue of nonlawyer representation has been hard-fought around the country by desperate parents who say there are not enough lawyers able or willing to take on their costly and complex disputes with local school districts. Circuit courts have split over the issue, setting the stage for high court review.

Meanwhile, a skilled corps of parent-advocates has sprung up to fill the void left by lawyers. As a reward for the parents' zeal, however, some local bar associations have gone after them, claiming they are engaging in the unauthorized practice of law. After negative publicity last year, the Cleveland Bar Association withdrew a complaint against a parent who aided the Winkelmans -- at least until the Supreme Court rules in their case.

Substantively, Parma and other public school organizations are telling the Court that under common law and the IDEA, nonlawyers simply may not represent others in court. Parents untrained in the law, they say, can sometimes harm their children's cases by faulty advocacy. It costs more money to defend against nonlawyer litigators, they add, which stretches the resources of money-starved school districts. "The states never signed up for such a bargain," says Parma's lawyer, Christina Peer of Squire, Sanders & Dempsey, in a brief to the Court. She adds, "Attorneys inject a measure of objectivity often lacking in an area punctuated by emotion."

You can read more background about the case here. The Supreme Court is expected to issue a ruling by July, The Plain Dealer reported.

Review of Recent Autism-Related News

A roundup of recent news covered in Autism Bulletin:

Research news

A consortium of 11 universities led by researchers at University of Michigan is tackling a DNA study with samples from 3,000 patients to better understand the nature of autism spectrum disorders. Read more here.

News from around the states, and Canada

A leading advocacy group for people with Asperger Syndrome, the Asperger's Association of New England, sought to reassure the public that the condition was not known to precipitate violent behavior; this came in the wake of a fatal stabbing at a Boston area high school on Jan. 19, in which the alleged perpetrator has an Asperger's diagnosis. You can read more here, and also here (the Asperger's Assocation) and here (column by Boston area parent Susan Senator).

Missouri Gov. Matt Blunt proposed spending $3.9 million to improve autism diagnostic and treatment services. Blunt made this proposal in his state of the state speech on Jan. 24. Read more here.

Texas lawmakers are poised to consider a bill that would make it possible for families to use school vouchers to send autistic children to private school. The idea runs headlong into a longstanding debate in Texas over school vouchers. Story here.

A New York assemblyman filed a bill that would make health insurers cover services for the diagnosis and treatment of autism spectrum disorders. More information here.

A New Jersey appeals court ruled Jan. 17 that a health plan for state workers improperly denied coverage for parents who sought services such as occupational therapy for their autistic children. Read coverage, including links to court decisions, here.

Arizona is piloting a program to address a wide gap in available services for kids with autism. More on that development here.

Pennsylvania lawmakers elected a new Speaker of the House who has a nephew with autism and pledges to put autism-related services at the forefront of his agenda. More on that development here.

A Washington State autism task force has submitted a set of forward-thinking recommendations designed to support people with autism throughout their lives. The governor and Legislature are supposed to consider what to do next. More on this issue here. The Washington report follows on the heels of another effort in Kentucky to define the scope of the problem and propose solutions for people with autism.

The Ontario government said it would provide autism-related services for 225 children on the province's waiting lists. The province said it also would train more teachers. But families pointed out the waiting lists continue to grow faster than investments in services and people to deliver them. Read more here.

Technology news

British autism researchers released a special DVD intended to help teach children with autism to recognize emotions. Read more here.

Note to readers

Dear readers: Do you find this "news in review" format useful? Please let me know by posting a comment here or sending me an e-mail (michaelsgoldberg AT yahoo DOT com). Thank you for reading Autism Bulletin.

N.J. Court Rulings: State Workers Health Insurance Covers Autism Services

The New Jersey Superior Court of Appeals ruled Wednesday in two separate cases that the health insurance program administrator for state workers wrongly denied requests of families who sought autism services including speech and occupational therapy for their young child diagnosed with autism spectrum disorder.

These cases represent legal rulings in one state, and for one group of people (children of state employees), but illustrate a larger skirmish taking place around the country between health insurers who would rather see someone else bear the cost of autism-related services and families who are told such services are an essential path to progress.

You can read the 23-page decision in the case of Jacob Micheletti and Joseph Micheletti v. State Health Benefits Commission here (via Rutgers University law library). The gist of the case: the state workers' health insurance administrator violated state law by not providing equal coverage to a person with a "biologically based mental illness" (BBMI) such as autism. The administrator had denied the request for speech and O.T. due to a narrow, "literal" reading of a state law which stated that such services were not required since they were not "restorative" -- that is, they were not designed to bring back abilities the autistic child used to have. Instead, they were designed to foster new abilities.

The appeals court judge, Donald G. Collester, wrote that the state law's spirit "is to afford greater coverage to those afflicted with BBMIs. However, the State Health Benefits Commission's exclusion of treatment for autism eviscerates that purpose." He further wrote:

In this case the denial of coverage for Jake's prescribed treatment is couched in terms of the contractual exclusion of benefits for non-restorative speech, physical and occupational therapy, but the medical evaluations of Jake indicate that the therapy is the only treatment modality for an autistic child. Denial of the treatment amounts to exclusion from coverage of a class of dependents, notably afflicted children, based on the nature of their mental illness, which is beyond the limits of the statutory authority of the SHBC.

The exclusion as applied by SHBC is contrary to the goal of the State Health Benefits Program because it would lead to the anomalous and unacceptable conclusion that while medically necessary treatment for autistic children is mandated for dependents of those insured by "carriers," an unfortunate State employee who has an autistic child must bear the entire cost of necessary treatment in addition to the emotional burden of having a child afflicted by this incurable and mysterious illness. This result runs contrary to the core of the State Health Benefits Act.

In a separate but similar case in which a state employee appealed the denial of health insurance coverage for O.T. services to a child with autism -- after receiving coverage for 22 months worth of services -- Judge Edith K. Payne also ruled in favor of the family. Payne noted that the health insurance administrator decided to preclude coverage for O.T., speech and physical therapy for children with autism and Pervasive Developmental Disorder "after a rise in such claims had been recognized" by its medical director.

This case is called Walter Markiewicz v. State Health Benefits Commission, and you can see the 19-page ruling here.

New Jersey state officials today were figuring out whether they were going to appeal the rulings, according to a newspaper report online in The Courier Post, based in the southern part of the state.

The Concept of Parents As Special Ed Law Enforcers

Parents are the ones who must stand up for their kids to enforce the law, and parents are the ones who must organize to make changes in school systems to help children with disabilities, according to legal advocates Peter and Pamela Wright. The Wrights form a potent tandem as special education lawyer and advocate who produce books, workshops, the Wrightslaw website and e-mail newsletters today posted the transcript of a recent interview they gave to an organization called Smart Kids with Learning Disabilities. You can read the transcript here.

It's interesting reading for parents (just over 5 pages on the printout I made). First, there's a back story here for Pete Wright's advocacy: his dyslexia was misdiagnosed as a child, and it was through his parents' efforts and his dogged work with a terrific one-on-one tutor (including summer school) that he learned to read, then excelled at it.

Second, the Wrights share their views on general trends:

• In the courts: the Supreme Court appears to be swinging negatively, that is, toward restricting the rights of disabled children. On the other hand, a number of judges have written well-reasoned decisions that spell out the clear legal rights of disabled kids and their families. Peter Wright doesn't mention specifics, but his past writings on court decisions would point to two autism-related decisions in federal court in Virginia. Read more about those here and here.
  
• In schools, in general, the Wrights say they see less affluent districts as more receptive to seeking expert help in the critical task of training special education and classroom teachers.
  

Peter Wright says, "The real catalysts for change are parents. Parents are the enforcers of IDEA, the special ed law." (IDEA stands for the Individuals with Disabilities Education Improvement Act of 2004.) Pam Wright adds:

"Parents represent their children's interests so, in effect, they are the consumers of services. And it doesn't take an army of parents to begin to educate school board members and superintendents -- or even to run for school board, and change the system at that level. ... By the time you get 10 people together, you are becoming a powerful group. By the time reach 25 or 50, you are a powerful organization and 'we'd better meet with you.' "

Supreme Court Takes Up Case of Parents of Boy With Autism

The United States Supreme Court has agreed to hear the case of an Ohio family who sought to sue their school district over services to their autistic son without hiring a lawyer. The Associated Press has a summary of the case on The New York Times website. The Supreme Court explains here that the issue before the justices is whether, under the Individuals with Disabilities Education Act (IDEA), the family can represent themselves without hiring a lawyer. (The question of whether the services that the Parma, Ohio, school district is offering is not something the Supreme Court will decide.)

Jeff and Sandee Winkelman have been fighting this case for some time and have won some points in lower courts. School officials have argued during these battles that the Winkelmans are not legally allowed to represent their son without using an attorney.

Sandee Winkelman told The Times in an article last May that her family could not afford thousands in legal fees, and they had nowhere to send her son Jacob to school. "When you're in a do-or-die situation, you do what you have to do," she said. (The article is here but you need a subscription to read it.)

The school district argues that IDEA requires lawyers to represent disabled children in court. The case is called Winkelman v. Parma City School District.

A Court Victory for Virginia Parents Seeking Services for Autistic Child

In a victory for a family seeking services for their 12-year-old child with autism, a federal judge ruled last week that the school district in Hanover County, Virginia, failed to offer a free and appropriate education for the child as required under federal law. The result of the ruling (pending appeal) is that the school district will have to pay for the child's private school tuition. The case is called J.P. v. School Board of Hanover County, Va.

This article from the Richmond Times-Dispatch explains the facts of the case. The article points out that this is the second legal victory this year won by parents of kids with autism in front of federal Judge Robert Payne. (You can read about the other case, Henrico County School Board v. R.T., here.) In the latest case, the judge found that school officials in Hanover County did not accurately represent the facts of J.P.'s abilities, and so created a program that did not appropriately serve his right to an education.

Peter and Pamela Wright, the couple that make up Wrightslaw, have a very useful summary of the issues in this case that would be helpful for parents and special education lawyers to study. See the Wrights' writeup here, which also links to a copy of the 88-page court decision.

For example, the Wrights point out, the case shows how vital it is to keep reliable, objective data reflecting what progress a child in a special education program makes -- or fails to make. The judge criticized the school district for presenting a speech therapist's log in court that purported to show J.P.'s progress. But in fact, other evidence that was more reliable showed that J.P. was not making progress.

The moral of the story: J.P.'s parents were justified in persevering with their concerns about their child. They could have given up after a state hearing officer rejected their arguments. But they pressed on and prevailed.

Why Elections and Court Appointments Matter to Parents of Special Needs Kids

In a 6-3 ruling issued June 23, the U.S. Supreme Court said that parents cannot expect to get reimbursed for the cost of expert testimony when they win a special education legal proceeding on behalf of a disabled child.

The point of law in this case, Arlington Central School District Board of Education v. Murphy, is narrow, but the implications -- combined with other recent outcomes in Washington, D.C. -- mean that parents should pay attention to who wins seats in Congress in November and the White House in 2008.

In this case, the Arlington, N.Y., school district won its point that the Individuals with Disabilities Education Act of 2004 (known as IDEA) does not spell out a school district's responsibility to pay for experts which a parent hires to help win a dispute. (The law does spell out reimbursement for legal fees.) Special education lawyer Peter W.D. Wright has written a clear explanation of the Arlington v. Murphy case. The key point is that Judge Samuel Alito's majority opinion in the ruling (see link above) states that parents can't be reimbursed for expert witness fees in a special education legal case which they win, because Congress didn't spell that out specifically in the law.

So, why does that matter? Well, if you are a parent of a kid with a disability like autism, the last thing you want is a legal fight with a public school district. More likely, you are hoping for a good working relationship, one that brings out an individualized education plan (IEP) to guide educators working with your child to make important progress in the short term and succeed in the long term.

But what if you don't have that relationship? What if you disagree? Many school districts have full-time special education administrators, child development specialists and lawyers to help them understand how the law applies to specific children's cases -- and how to defend their legal positions. What do parents have? An understanding of their kid's needs, a supportive family and friends if they are lucky. Legal rights which federal law provides. But if they don't have legal expertise or access to it, they might be out of luck against a well-armed school district.

This point about an imbalance of power was lost on the Supreme Court in its 2005 decision, Schaffer v. Weast, which says that the burden of proof in special education cases falls on the party seeking relief. (Often that means the families of special needs kids.) Again, the Arlington v. Murphy case is narrower, less important in the big scheme of things. But it points to a reality: the imbalance of power, one that puts parents in an uphill climb before the trip begins, will continue. It will continue unless the federal laws regarding special education change to address this imbalance. And that won't happen unless advocates for disabled children seek out candidates who understand this point of view.

So, in the coming election season, if you have the chance, become a citizen. Ask questions. While it might be difficult to ask questions in a public forum related to your particular case (and if you do ask, it could be difficult to get straight answers), there are other questions to ask a candidate: What does he or she think about IDEA? Does it need changes? What kinds of changes?

For parents of children with autism spectrum disorders, you could ask what should Washington's role be in addressing the rising number of autism cases? More specifically, you could ask whether they are a co-sponsor of the House Bill 2421, the Combating Autism Act of 2005, which provides funding for autism screening across the nation, regional centers for medical care for people with autism, and research into interventions for ASD. Don't forget to ask them why they are for or against it.