Wednesday, May 31, 2006

Court Victory for Virginia Parents of Autistic Child Who Sought ABA Services

A U.S. District Court judge in Richmond, Va., ruled May 26 against a school district and in favor of parents who sought reimbursement for private school tuition for their autistic son. It's a ruling against the Henrico County school system that, according to this news report in The Richmond Times-Dispatch, could cost the district hundreds of thousands of dollars.

In his Wrightslaw web coverage, Peter W.D. Wright provides a legal analysis of the case -- he notes, for instance, that the Henrico County school district, which filed suit against the parents after they won their case in the state administrative hearing process, is known as a litigious agency among lawyers. Wrightslaw also posts a copy of the decision in the case by U.S. District Judge Judge Robert E. Payne in "County School Board of Henrico County, Va., v. R.T., a minor, et. al." (As Wright notes, the judge provides a cogent discussion of what autism is, problems of attending and stimming, and different methods used to teach young children with autism spectrum disorders.)

These links above outline the story of R.T., a young boy with autism spectrum disorder. The gist of the story is that R.T.'s parents took their son out of the public school program after he was failing in a classroom run under a method known as TEACCH, for Treatment and Education of Autistic and realated Communication-handicapped Children. ( is a link based at the University of North Carolina Medical School.) R.T.'s Henrico County school district classroom served seven disabled children with one teacher and one aide continuously roaming around the room to make sure the children stayed on task. After R.T. failed to make progress, his parents enrolled him in a program at the Faison School for Autism, which follows the principles of Applied Behavioral Analysis (ABA). R.T. made substantial, rapid progress. Then his parents successfully proved to a state hearing officer that they deserved tuition reimbursement because Henrico County didn't provide a free and appropriate education mandated by federal law. The school district appealed this decision in federal court.

Special education lawyers are going to study this decision for several reasons, not the least of which is that it comes on the heels of an important 2005 Supreme Court Decision, Schaffer v. Weast, which says that the burden of proof in special education cases falls on the party seeking relief. (Often that is the families of special needs kids, but in this case it was the Henrico County school district.)

But more important for parents of autistic kids is this lesson: The reason the judge rejected the school district's arguments, and awarded parents a victory, was that they were able to demonstrate their child's educational needs using evidence -- especially data collected during ABA instruction time -- to show what kinds of educational services were helping R.T. make effective progress.

It can be very difficult for parents, in the midst of ongoing discussions with school officials about educational services, to separate the business of discussing services, the work of collecting information from professionals and backing up your position using facts, from the fact that you're talking about a person's life -- your kid's life. But it's a must. The parents of R.T. (or Reid) did. And they won.

As the mom in the Virginia case, Courtney Tutwiler, told the Times-Dispatch: "The opinion validates our belief that not only was it right that we pulled Reid out of the county school system but that what the county could offer Reid at the time was not appropriate."

Wednesday, May 24, 2006

Autism Services At Issue in Canada and the U.K.

News stories this week remind us that parents' concerns about how to provide adequate services for children with autism spectrum disorders are rising in more places than the United States.

In Ontario, news reports like this one show parents protesting the provincial government's policy of covering services for autistic children until the age of six. The problem goes beyond access to services, advocates say; it can be a long time before families can get their children the proper assessment tests to understand their condition. An unspecified number of families are relocating to Alberta, where the government provides autism-related services until a child turns 18. This report from in Toronto describes the conflict between families and the Ontario government as lasting several years.

In Britain, meanwhile, a survey of 1,400 parents of autistic kids by The National Autistic Society, a London-based advocacy group, shows that more than half believe their children are not in the proper school, the BBC says in this writeup. The United Kingdom has an estimated 90,000 children with autism spectrum disorders.

The Society this week launched a campaign to raise awareness about the need for better services for kids on the spectrum. A quick look at the group's website shows that it is home of a worldwide survey of people who have autism and parents of autistic children. Find that survey here.

Monday, May 22, 2006

A School District's Effort to Listen

The Newton Public Schools have embarked on a listening campaign.
Administrators of the 11,000-student school district, just west of Boston, are soliciting the views of parents of autistic kids, to ask questions like:

  • Are they satisfied with the quality and quantity of communication with teachers?
  • Are they integral to their child's educational plan?
  • Do they feel their student is receiving a quality education?
  • Does school and family collaborate on implementing behavioral strategies?
  • Do parents feel school staff are adequately trained?
  • Are school staff open to the suggestions of outside professionals?
And on and on, for a list of 40 questions (most of them multiple choice, or yes-or-no) intended to take 10 or 15 minutes. Of course, it depends on what administrators choose to do with the information they gather. It may all come to nothing, in fact. But it seems like such a healthy initiative that could yield some real insights. While each child needs his own plan of services, there's clear value in generating a survey that yields information about the group. It will be interesting to hear if any program changes or service offerings come about because of what they learn. Let's hope.

Thursday, May 18, 2006

Care for the Caregivers of Autistic Kids

You don't need to read stories like this one -- the tragedy of a mother who is accused of killing her autistic toddler daughter in Illinois this week -- to be reminded that parents and other full-time caregivers of kids on the autism spectrum lead intense, stressful, emotional lives.

Now this mother was reportedly suffering from depression, a serious medical problem that should receive attention. I wouldn't want to minimize that, or speculate about any aspect of this tragedy. But reading about this story I couldn't help but think about the need for caregivers to make taking care of themselves a priority along with their kids. And taking care of themselves should go beyond parent support groups.

This mom was active in a parents support group, The Peoria Journal Star reported in the above link. Support groups are great. They can be especially valuable for moms and dads of children who are newly-diagnosed. Where do I go for services? Whom do I ask for advice? How do I tell a good service provider from a great one or a not-so-good one? What do you do when things are not going well? What kinds of things should you do to sustain progress? What are other parents' experiences of dealing with the ups and downs of their kids' development? With service providers? School systems? A parent support group can be a sustaining link to information and common sense when you feel fogged in by the unknown future an ASD diagnosis can bring and flummoxed by the full-time commitment it takes to manage services and educational programs.

But caregivers need more than this. There needs to be some pursuit outside of the autism universe to maintain a healthy outlook. It could be as simple as reading a book, taking regular walks, going out with a friend, talking to people about subjects unrelated to your autism quest. People I know play soccer, write, garden, belong to book groups, get involved in houses of worship, make special occasions to spend with their "typical" kids. These ideas appear so very suburban, so "normal" as I write them. It sounds like the people I'm describing do this all the time, every week. They don't. It's irregular. But even snippets of time away from ASD can carry ongoing significance in the long trip we're on.

Wednesday, May 17, 2006

Doug Flutie Makes A Difference for Autism

When quarterback Doug Flutie retired this week after 21 seasons of professional football, it was big sports news in Boston, where Flutie grew up and played his Heisman Trophy-winning college football. After the gracious retirement remarks by Flutie and the testimonials by New England Patriots Coach Bill Belichick and owner Robert Kraft came a nugget that drew our attention: a $22,000 donation by Kraft to the Doug Flutie Jr. Foundation for Autism.

The foundation is named for Flutie's son, who has autism. Flutie and his wife Laurie started raising money in 1998 and established the foundation in 2000 "to provide families with a place to turn when they are in need of support and autism resources." The foundation raises money to provide grants to non-profit organizations and so far have awarded close to $3 million in the United States and Canada. This upcoming weekend, for example, Doug Flutie and his Flutie Brothers Band is playing a benefit at The Center for Arts in Natick on Saturday night. On Sunday, the foundation is holding a 5-kilometer road race.

The foundation has been a meaningful supporter of the Autism Alliance of MetroWest, making possible activities like a kite-flying festival in the spring, and open gym sessions in the winter. These are activities that draw families and their kids with all kinds of autism spectrum disorders to safe, welcoming environments -- no small consideration when you're looking for a constructive way to spend free time together. The Alliance has even prepared a video to help train first responders such as police and firefighters how to deal with autistic kids.

The host of the video? Doug Flutie.

Tuesday, May 16, 2006

An autism resource for police

The site Autism Risk and Safety Management is a resource for both law enforcement authorities and parents thinking about keeping autistic kids safe and working with police if the need arises. Its author is Dennis Debbaudt, whose son has an autism spectrum disorder, and who wrote Avoiding Unfortunate Situations in 1994 to help police understand and deal with both children and adults with autism.

Dennis writes that "
persons with developmental disabilities, including a rapidly rising autism population, are approximately seven times more likely to come in contact with law enforcement professionals than others." So it makes sense that he's given workshops based on his research and experience to federal law enforcement agencies and state and local police around the nation.