Autism Bulletin's 2007 Advocates of the Year

The past year saw important news for the autism community, including a big push by the American Academy of Pediatrics to make its members more aware of the need to diagnose autism spectrum disorders early, and big wins in South Carolina and Texas by advocates seeking to get health insurance companies to cover autism services.

Autism Bulletin's 2007 Advocates of the Year list includes the people and organizations behind those big events. It also includes other people and groups who made a difference—including a number of individuals nominated by readers. Thanks to everyone who shared their thoughts on these individuals' important efforts. Here are the picks for Autism Bulletin's advocates of the year:

The American Academy of Pediatrics.
It was big news in the fall when the American Academy of Pediatrics issued a call for doctors across the United States to offer routine diagnostic screenings for autism spectrum disorders. The group that has 60,000 members also published papers to educate its members about autism and what treatments offer important help for people on the spectrum, and a special package for doctors to educate themselves about ASD. The move is important as an awareness campaign, but its impact could have larger repercussions as it firmly legitimizes therapies such as Applied Behavior Analysis (ABA) which some insurers, school officials and medical professionals considered "experimental" and provides concrete baselines for service levels (25 hours per week, 12 months per year) for such therapies.

The South Carolina Parents Who Won "Ryan's Law."
There were tears, hugs and celebrations in the lobby of the South Carolina capitol building last June, and they were justified: the state Legislature had just overridden the governor's veto to pass legislation that requires health insurers to cover services for children with autism up to age 16. Not only did these parents and other advocates led by Lorri Unumb (Ryan's mom) and Lisa Rollins work tirelessly to educate state lawmakers about the need—and relatively modest costs—for such coverage. They have organized advocates from around the nation to share strategies and tactics to work for similar legislation in others states. We saw legislation pass in Texas and have been watching as advocates working in Michigan, Arizona, California and Florida, among other states, seek to follow South Carolina's lead.

Sandee and Jeff Winkelman, Who Argued for Parents' Rights (and Won).
The parents of Jacob Winkelman of Parma, Ohio, fought and won the right for parents across the nation to argue on behalf of their disabled children in federal court. In a 7-2 decision in May, the U.S. Supreme Court 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. Other parents of autistic children understood the Winkelman's plight: when you have to pay tens of thousands of dollars for autism-related services and schooling, who has the money for a lawyer to fight for services in court? The Supreme Court said they didn't have to be lawyers to fight the good fight.

Senator Hillary Rodham Clinton.
Clinton, the New York Senator who is in a dogfight for the Democratic presidential nomination, this year demonstrated a willingness to be a front-and-center advocate among policy makers in Washington D.C. for people with autism and their families. In March, Clinton and Sen. Wayne Allard, a Colorado Republican, filed legislation that would expand autism services and research. Then this fall, on the campaign trail, Clinton made the loudest call for increased spending on research, education and support services for people with autism, pledging to spend $700 million per year if elected. Yes, it's that time of the political season when we hear lots of promises. And other candidates (only Democrats so far) have noted the need to do something more for people with autism. But no one else has made such pointed, specific proposals for autism. At least not yet.

The Asperger's Association of New England.
It was almost a year ago that a murderous stabbing in a Lincoln-Sudbury High School bathroom in the Boston suburbs shocked the region where I live. It turned out that the 16-year-old who allegedly killed a fellow student has an Asperger's diagnosis, a fact which his lawyer has made central to his defense. The Asperger's Association of New England took it upon itself to invite the public to discuss the diagnosis and assert that physical violence is not at all typical of people with the condition. The group's leaders fielded many media calls and sought to enlighten the public and spread awareness about Asperger's. A footnote to the tragedy: local media have reported the special education program which the Asperger's student attended is no longer hosted at the high school.

Angela Mouzakitis, BCBA.
ABA needs more voices like that of Angela Mouzakitis. Mouzakitis publishes the blog Applied Behavior Analysis: Current Topics, and is a board certified behavior analyst (BCBA) who teaches in the graduate special education program at City University of New York's Queens College. Her essays are always professional, sometimes technical and academic—but throughout she conveys a passion for helping kids on the autism spectrum, for creating new educators who share her passion. Along the way she demonstrates an open-minded approach to practitioners of other kinds of therapies.

Parents and Siblings Who Teach Others About Autism

Karra Barber is the mother of a teenager with Asperger's Syndrome who has brought energy to her advocacy work in California. Her website has a useful list of Asperger's support programs in California, among other resources. A reader writes that she was a leader in the founding of a summer camp for film-making for kids who have trouble communicating at Saint Mary's College in Moraga, Calif.

Morton Ann Gernsbacher, a psychology professor at the University of Wisconsin at Madison and past president of the Association for Psychological Science, has made understanding autism one of her research priorities since her son received an autism spectrum disorder diagnosis. An Autism Bulletin reader notes that Gernsbacher's work to make therapists aware about autism and to battle prejudicial perceptions of people with ASD is essential.

Renee Henderson, a Philadelphia-area mother and advocate, has established a group called Autism Sharing and Parenting, which organizes support groups and parent workshops in Philadelphia and Montgomery Counties in Pennsylvania. A reader writes that Renee, who started the group three years ago, spends many hours helping families make daily picture schedules using Boardmaker, and providing a helpful and supportive ear, and adds: "She is making a difference by teaching parents how to become better advocates for their children, by providing parents with the information, tools and resources needed to improve their quality of life."

Nicholas Lombardi, who is now 12, was in the mall with his younger brother Joey and his mom when Joey took off his shoes and started running. "As the people stared I found my self very angry," Nicholas writes in an essay published on the Autism Speaks website. "Not at him, not really at them, but maybe at autism. I wished there could be a way… to have people understand. A voice." Nicholas decided to create a button for his brother and other autistic kids to wear that says "I'm not misbehaving, I have autism. Please be understanding." Sales of the button in English and Spanish, has raised more than $8,000 so far at Autism Speaks online store.

Recognizing Continued Advocacy Efforts

As noted in the 2006 list of advocates, there are a number of organizations who deserve credit for their ongoing efforts on behalf of people with autism and their families. These include advocacy organizations like the Autism Society of America (which this year announced a partnership with Easter Seals to improve access to services), and Autism Speaks (which merged with Cure Autism Now). Though both groups are large and as such, have their critics and controversies, they are amassing the resources needed to make a national impact.

Others who have continued and expanded their worthy efforts include:

* The center builders, such as The Friends of Children with Special Needs in Fremont, Calif. and the Autism Center of Pittsburgh, an outgrowth of the advocacy and support work at AutismLink.

* Medical researchers. The projects funded by public and private sources, both in the United States and abroad, are aimed at new understanding of autism's potential causes and treatments. See "Large Children's Health Study Cites Autism as One of Key Target Areas" and "British Researchers Unveil Brain Imaging Center" as two examples.

* Educators. This year, Autism Bulletin started an autism schools map project to build a directory for parents seeking options. The map is filling up with examples of organizations committed to helping kids, from the Claremont Autism Center in California to the Connecticut Center for Child Development to the Florida Autism Center for Excellence (FACE) School in Tampa.

Others Worth Noting

* Ivan Corea and others at the National Autistic Society in the United Kingdom, whose advocacy and awareness efforts included a meeting with former Prime Minister Tony Blair.

* Writers who shared their experiences as parents, including Roy Richard Grinker and Portia Iverson. And Tim Page, who wrote movingly of growing up with Asperger's.

* The British author Nick Hornby, who uses his success to sustain the TreeHouse school in London he helped to found, and even from time to time, uses his book reviews in The Believer to spread awareness, though his own experiences, when he writes about autism.

* IEP Advocates like Barbara Ball of Newton, Mass., upon whom parents rely for advice and support.

Thanks to all of these individuals and organizations for their efforts.

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.

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

Tips for the IEPs Process from Wrightslaw

Across the nation, parents of children with disabilities are working with local school district representatives on Individualized Education Plans (IEPs) for their children. IEPs are the contract that the children (and their parents as guardians) have with local school districts that establish a set of expectations for the school district's services -- and goals for the student's progress.

The process is part of the legal right to a free and appropriate public education afforded children with disabilities under the federal Individuals with Disabilities Education Act (IDEA) of 2004 (with U.S. Department of Education regulations issued in summer 2006).

Wrightslaw.com, the well-informed legal and special education advocacy team of Peter W.D. Wright and Pamela Darr Wright, have reminded their newsletter subscribers about a series of articles related to the IEP process, students' rights under that process and tips for what to do for IEPs. Whether you have a 3-year-old with a recent autism diagnosis and you need to start thinking about special education services or you are not satisfied with the progress your middle school student is making, even though she may be hitting the goals set out for her, these articles are worth scanning.

Because the work of diagnosing and treating autism spectrum disorders is rooted in observed behaviors, writing these performance goals in a precise way, so that it's clear to everyone what a child needs to do to make effective progress -- progress that can be observed (or clear lack of progress if things are not going well) -- is essential. So while these articles are relevant to all all children with disabilities, it's particularly important for parents of kids on the autism spectrum to familiarize themselves with the IEP process and the rules that govern it.

Among the Wrightslaw articles are:

* A good primer on writing effective goals, the benchmarks in your child's IEP that help you assess how the school year goes. See "What You Need to Know about IDEA 2004: Present Levels of Functional Performance & Functional Goals in IEPs," by advocate Pat Howey, by clicking here.

* A useful summary and explanation of the IEP process, with sections on IEP meetings, what's in IEPs, information about reviewing and revising them, school placements and transfers. See "IDEA 2004 Roadmap to the IEP," by clicking here. This additional article includes information about requirements for highly-qualified teachers and research-based instruction, with citations from the federal law.

* Information on draft IEPs, which are documents that school district representatives bring to IEP meetings. They are not binding, but some parents feel they have the effect of cutting off parental input. This article also by Pat Howey, explains why it's important to discuss the IEP before the IEP team assembles to discuss such a document.

It's free to sign up for the Wrightslaw.com newsletter and receive it via e-mail. Wrightslaw does a very good job of informing parents about their children's rights, explaining how to be advocates and also interpreting important court cases. When you see the promotions and ads on their website you will know that they also make part of their living from selling books, videos and seminars. I have read lots of their online articles and find them authoritative, but I haven't had the chance yet to read their books or attend a seminar.

You can find other information about IDEA in the Autism Bulletin sidebar, under "Resources" and "Government Related" headings. If you have trouble seeing any of that, let me know.