Autistic woman's story shows how far we have to go

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July 24, 10:57 AM

by Caroline Grannan, S.F. Education Examiner

 

 

Rachel Norton is the mother of a student with autism.

I read this news story with interest yesterday, about Lisa Craib, a classmate of mine at Berkeley High School in the mid-1980s who has an autism spectrum disorder. At the time we attended school together, I knew that Lisa had a disability, but I never knew precisely what it was. With the arrogance and cluelessness of youth, I vaguely assumed she was "retarded." Now, of course, having navigated the school system for my own child with autism, I marvel at the bravery of Lisa and her parents, who enrolled her in an enormous public high school to get a mainstream education.

When Lisa and I entered high school, the idea of a child with a disability attending mainstream school was a relatively new one, and educators certainly had very little experience and training in educating children with autism. The Federal law guiding the education of children with disabilities, the Individuals with Disabilities in Education Act (IDEA), had been passed less than five years before, and educators were just beginning to implement one of IDEA's central tenets -- that every child, regardless of ability, is entitled to a free, appropriate public education in the "least restrictive environment," most often the classroom the child would have attended if not disabled.

So it must have taken quite a leap of faith on Lisa and her parents' part to enroll at Berkeley High, which at the time enrolled over 3,000 students, had an open campus and allowed students to smoke cigarettes on school grounds (the pot smokers had to go across the street to Provo Park, where they were more likely to be hassled by a street person who wanted a toke than the Berkeley police). I remember Lisa occasionally being teased or bothered by kids, though I think most of the time she was just ignored. I don't remember if she had an aide or even if she was in a self-contained special education classroom most or part of the day. I also don't remember if there was any attempt to truly include her in the life of the school, or to play to whatever social strengths or abilities she might have had to help her find some sort of connection with her classmates.

What I am sure of is that things haven't changed nearly as much as they should have in the three decades since the passage of IDEA. In a recent article focusing on the increase in autism and its effects on the public schools, the Chronicle's Nanette Asimov highlights recent reports from two state panels, the Legislature's Blue Ribbon Commission on Autism, and the Department of Education's Autism Advisory Committee, both of which have found that California's response to the increase in autism has been inadequate and uneven. Both recommended a massive rethinking of our approach to educating, housing and supporting individuals with autism if we are to help these individuals maximize their independence and contributions to society.

It is not an overstatement to say that special education is in crisis, in San Francisco, in California and in the rest of the country. The schools are required to provide an appropriate education to every child, but the state and Federal governments have never allocated what it costs to fulfill that mandate. Money from each school district's general fund must make up the shortfall, putting pressure on already threadbare general education budgets and pitting special and general education programs against each other. In her article, Ms. Asimov characterized general education as an "ATM machine" for special education, an unfortunate metaphor that encourages educators, parents and administrators in general education programs to resent the costs of educating kids with extra and sometimes profoundly expensive needs, and reflexively resist any attempt to expand services.

It's true that the increase of autism is in a way a perfect storm for special education programs and school districts: the most severe cases of autism require intensive one-to-one teaching methods, and even more mild cases like my daughter's require at least part-time aide support, not to mention more training for educators in social facilitation techniques, multi-sensory curriculum approaches, behavior modification and many other topics. Full or partial mainstreaming also requires training for all involved -- the administrator, the general and special education teachers, as well as the paraprofessional who will support the target child in the classroom.

But it is equally true that we have no choice but to do better. The most intriguing part of Ms. Asimov's reporting is the strange disparity she found in the services school districts provide to students with autism, a disparity that she says "suggests that where kids live plays a strong role in whether they get the additional help." To my mind, there is no explanation for this geographic disparity other than the biases of the local special education director -- e.g., in one county, the director decides that providing occupational therapy services is too expensive or cumbersome, and instructs staff to de-emphasize that service in favor of others that the district can more easily deliver. In another, the local administrator might be biased against individualized teaching. Indeed, San Francisco Unified reported to Ms. Asimov that very few of its 373 students with autism receive one-to-one paraprofessional support. David Wax, a senior special education administrator with SFUSD, claims that this is because students become dependent on such aides. Many parents, however, say this is hogwash. "If he learns to speak only to the aide, that's fine," a family member of a non-verbal autistic child told me after reading Mr. Wax's comment. "Let's get the kid talking to one person first, then worry about getting him to speak to others."

But in the absence of clear standards and guidelines on best practices, arbitrary biases like this are allowed to stand. Parents are forced to either move, accept a program they feel is not effective, or take legal action against their school district. It gets worse: until recently, if parents documented the facts of their case and presented the dispute in a clear and logical way, they could reasonably expect to get a fair hearing by a hearing officer with training in special education law. Last year, however, the state took hearings in-house, and disputes are now often heard by people without any knowledge of special education law  -- the state's hearing officers are not even required to have law degrees! Since this change, parents are suddenly losing 95 percent of special education cases.

In addition, the Supreme Court in 2005 removed the traditional rule that obligates school districts to establish that they have respected the legal rights of students with disabilities. Other large states have recognized that it is neither fair nor efficient to put the burden of proof in special education cases on affected families and added back this obligation on their school districts; there is currently a piece of legislation that would restore this protection for California families as well, but SFUSD is listed as a lead opponent to the bill. When I wrote a letter to members of the San Francisco Board of Education protesting this unnecessarily adversarial stance toward parents, one Commissioner reportedly remarked that we couldn't afford to put the burden of proof back on the school district. It makes me shiver to think that our moral and legal obligation to be sure we're adequately educating children with disabilities can be so easily set aside by worries about money.

One of the reasons I decided to run for the San Francisco Board of Education was my belief that it is high time for a new posture and engagement by school boards on the special education crisis; the long-held biases and unnecessarily adversarial positions are not serving anyone. In the end, this is about helping people like Lisa Craib to realize their full potential and contribute what they can, which is often much more than was originally expected from them. It is about building a society where a person like Lisa or my daughter is appreciated for who they are, and not summarily excluded, fired or evicted when their school, employer or landlord wants to get out of the sometimes difficult, expensive or inconvenient obligation to be inclusive and meet their special needs. It is about realizing that every person has potential, and recognizing that we can never know the limits of that potential.

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