The Strange Tale of a Good Fence and a Bad Neighborhood

The Rocky Mountain News today told the story of a Littleton, Colo., family suing their neighborhood association to keep a fence so that their autistic son wouldn't run away. I read this story -- you can see it here -- and wondered: Of all the problems parents and families have, struggling to find the right supports and services so their kids with autism can make gains; with all the effort it can take to do simple family things others take for granted, like going out for ice cream or attending a worship service; with all the uncertainty about why the incidence of these disorders are rising, and what we can do to understand it, unlock its causes, treat its symptoms and seek solutions; with all the unanswerable questions about what the future holds, next week, next year, way ahead when mom and dad aren't here to help. With problems these children face, like the Little League baseball coach in Pennsylvania who offered money to a youth to throw a ball to injure an autistic boy so he couldn't play, or the parents in Connecticut who today urged limits on what kinds of physical restraints school staff can use.

With all of that to worry about, this family has to fight for a fence to keep their kid safe?

The Colorado newspaper said autism experts advised the parents of 8-year-old Fletcher Illig to install the fence after he had been discovered wandering around his neighborhood, entering neighbors' homes, jumping on their beds, turning on their faucets. (The story also notes that the boy accidentally knocked over a halogen lamp that caused a mattress to ignite, and required fire damage repairs.)

The tan cedar wood fence is six feet tall and replaces a four-foot edition that didn't keep the boy in his own yard. Unfortunately, the Illigs live in an area where there's a neighborhood association leadership that wants the family to take the fence down so the association can approve its design. The Illigs say they gave notice to neighbors that they erected a fence similar to those of neighbors (one difference: theirs is tan, others are darker colored). They got Medicaid to pay for it. Then they got a letter saying the fence wasn't approved.

Maybe the story is more complicated. Maybe the neighborhood leaders believe the principle of upholding their authority over fence design is more important than showing some sensitivity to this family. Maybe that idea of who's in charge of fence aesthetics is more important than fixing a problem that could lead to some big liabilities, legal and financial, if something heaven forbid happens to the child. I hope it's simply a misunderstanding that gets solved with some easy-to-find compromise.

Like, maybe, paint the fence. We've got more important things to worry about.

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.' "

Study in Kentucky, Indiana, Evaluating Collaborative Teaching Model for Autistic Children

A three-year study is underway in 11 counties in Kentucky and Indiana to evaluate an autism education model that seeks to use a consultative model to train classroom teachers to work with children with autism spectrum disorders. The study, funded by a $450,000 grant from the National Institutes of Health, involves following the progress of kids from 20 different families. The Louisville Courier-Journal yesterday reported about this research into the model, called the "Collaborative Model for Promoting Competence and Success" in yesterday's newspaper. You can read a copy of the article, "New teaching method may aid autistic students," by clicking here.

Lisa Ruble is a psychologist and autism researcher who directs a program at the University of Louisville called the Systematic Treatment of Autism and Related Disorders (STAR). She wrote short paper describing this approach which you can read here.

This paper, which covers some issues like social interactions and conversational skills that a child with autism often needs to acquire, would be good background reading for parents who are just learning about the issues that they will need to discuss when they go to set up an individualized education plan (IEP) for their child in school. However, it's unclear how this model of providing consultants to train teachers would work for a broad array of teachers, not to mention a broad array of autism cases, without more time and resources devoted to training the teachers -- and more hands-on help and supervision for them in the classroom than is described here. In other words, the goals are good but the plans for making it work appear rather thin. It will be interesting to follow up after the study period ends in 2008 to see the results.

It's also interesting to note that the Courier-Journal article quoted a co-founder of an autism services group called Turning Point for Autism, which is affiliated with the Center for Autism in Tarzana, Calif., and provides applied behavioral analysis services to children on the autism spectrum. Betsy Gibbs told the newspaper that ABA is a method already shown to help kids learn. "Sometimes you don't want to reinvent the wheel," Gibbs told the newspaper.

Family Respite Care Bill Approved by Congress

A bill that should benefit families who live with and care for a person with autism won approval during the lame duck session in Congress last week. The bill, called the Lifespan Respite Care Act, is designed to help family caregivers who provide daily care to loved ones with disabilities or chronic conditions.

The bill, which requires President Bush's signature, authorizes $289 million during five years for states to train volunteers and provide other services to help an estimated 50 million families who are caring at home for an adult or child with a disability, according Rep. Mike Ferguson, a New Jersey Republican, who was one of the bill's sponsors. Ferguson posted a press release on his website about the bill.

The federal legislation would let states apply for grants from the Department of Health and Human Services to set up respite care programs. It's modeled after similar programs in Nebraska, Oklahoma, Oregon and Wisconsin, according to The Autism Society of America. The Society was one of the advocacy groups lining up behind this proposal in Congress and posted a statement praising its passage.

As parents and other family members know, it is not enough to line up educational and other services for a person with autism. Caregivers need regular breaks from the action to maintain a healthy attitude, to remain the rocks of support they need to be. The Autism Society release included this interesting passage:

Research indicates that families of children with autism have greater parental stress due to challenges in caring for their children. Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older. Families who report less stress usually are the recipients of formal family support services, such as respite care.

On to the White House for the Combating Autism Act

The Senate yesterday passed the House's version of the Combating Autism Act, clearing the way for President Bush to sign it into law. While I don't yet see any public comments from the White House about this bill, statements from advocacy groups and related media coverage treat it as a given.

The online version of Newsweek has a good summary near the end of this article posted tonight, headlined, "Families Cheer as Autism Bill Passes":

Last month, a compromise version of the bill was agreed to by Barton and a coalition of autism groups, including Autism Speaks, Cure Autism Now and the Autism Society of America. The new Combating Autism Act of 2006 authorizes slightly more than the $924 million in the original bill (the new amount is $945 million) but has fewer specifics about where and how the money should be spent. The bill authorizes Congress to spend the money over the next five years, but they must vote each year to appropriate the funds. "Passing the act is a necessary first step," says Craig Snyder, Cure Autism Now's chief lobbyist. "This is the battle plan to win the war against autism, and now it's the law of the land."

It will be the law of the land, of course, after the president signs it.

Autism Speaks and Cure Autism Now issued a joint statement praising the Senate's action and noting that they had just agreed to merge their operations. You can read that statement here.