Tuesday, July 29, 2008

legal system and IDEA impact on autism

In the 4th century B.C. Aristotle stated that education is an ornament in prosperity and a refuge in adversity.

In November, 1975 president Gerald Ford signed the Education for all handicapped children act which later was to become the Individuals with disabilities education act with great reluctance. He stated that in spite of the fact the law had good intentions it would never be able to promise what it delivered and was unrealistically raising the expectations of the groups affected.

Neither man could have possibly realized how prescient they were.

I was a special education student for many years. Though I had left special education several years before the education for all handicapped children act was enacted into law, I am still interested in many of the issues and consequences of this law.

I recently reread an article that appeared in the Journal of Autism and Developmental Disorders about six years ago by attorney Myra Mandlawitz about the legal system's impact on educational programming for autistic children. This article has a bunch of interesting stuff.

In Vorhees, one new jersey township it was stated that 40 hours a week of intensive one on one instruction was an expensive norm but this and other parental requests were consented to in order to avoid litigation. It was expected that this level of service for the autistic children would continue year after year regardless of whether or not the child was making progress in the treatment. The motivation for continuing the treatments seemed to be avoidance of litigation by parents.

One of the earliest supreme court cases regarding special ed was the Rowley case which took place in the early 1980s. it was stated by the supreme court that an "appropriate" education did not mean "best". It did not mean that school districts could only offer a jalopy level of education but were under no obligation to offer a rolls royce quality of education either. If there are two programs that yield the same result, the school district may opt for the less costly of the two.

In the Burlington case, the supreme court ruled that parents may be reimbursed for money paid out of their own pockets for special ed programs provided that school's IEP was found to be inappropriate and the program the parents chose conferred benefits. The Rowley standard is used.

The next case was the Shannon Carter case in which the supreme court ruled that parents could be reimbursed for educational services by the school district if they sent their child to a private school even if the services were conducted by noncredentialed teachers or uncertified personnel. This decision was made in 1994 and is of great interest, because it paved the way for commercialization of ABA programs. The next court case after this was Malkentzos vs. DeBueno. The school district argued that because the parents used uncertified college students as therapists for the autistic child's ABA program that they were not under obligation to pay for the treatment, but because of the Carter decision they did not prevail and the court ruled that ABA or any other autism intervention (one not requiring licensure under other laws) need not be done by credentialed persons. Because of this decision, there was no need for anyone operating an ABA program for autistic children to hire anyone with any particular qualifications. Many of the Lovaas therapists are now college students or even teenagers not old enough to legally buy a six pack. We can start to see a pattern here that was started shortly before the mid 1990s, which paved the way for persons to have an incentive to get an autism diagnosis because of the availability of this therapy. The study published in 1987 by Dr. Lovaas alleged that nearly 50% of autistic children could have completely normal functioning if 40 hours a week of this therapy was done. Of course Lovaas' study was dependent on the use hitting children and possibly other aversives. Aversives were outlawed in California in 1991 and possibly some other jurisdictions as well, but the method was still marketed and promoted albeit dishonestly.

One interesting case that was talked about in the article was a mother who tried a variety of alternative biomed treatments for her son in addition Lovaas-style ABA. The alternative treatments were certain diets involving only white food. At other times the mother administered electric shock in order to kill any parasites or yeast that she thought her son might have. Also bowel cleansing and liver stimulation treatments were used that had been recommended by a naturopathic doctor. (the article does not say if this was a DAN doctor or DAN protocol or not). The child regressed academically. The mother claimed that it was due to the discontinuation of the child's lovaas therapy, while the school district claimed that it was the naturopathic treatments as well as the child's insufficient diet. The hearing officer did not rule in either party's favor but ordered that the child receive testing and evaluation at a local children's hospital.

In thinking about the school districts willingness to cave in to parents' demands for treatments in order to avoid litigation in the Vorhees township, it must be remembered that New Jersey has the highest prevalance rate of autism of any place in the country. One interesting study might be to assess the litiginous of parents in New Jersey and the number of lawsuits that occur there as opposed to someplace like lets say Alabama where the prevalence rates for autism are substantially lower. Some people have suggested that parents move to New Jersey in order to obtain better services for their kids in great numbers because they have more comprehensive ABA and other special ed services there. The 2007 report published by the CDC suggests against this, claiming that the majority of autistic children receiving services in New Jersey were born there. It does not rule out children within New Jersey moving to other school districts though or the likelihood of litigation in New Jersey and possibly other factors.

Furthermore we seem to see a pattern here between a variety of special education law supreme court decisions that would make it easier for parents to obtain certain types of treatment for their children throughout the 1990s and a corresponding increase in autism diagnoses. One must wonder if this temporal relationship can be cause and effect. So far no one has shown any environmental reason for increases in autism diagnoses in spite of the insistence upon it by the folks at the Age of Autism webpage and other places. Much time and energy has been spent trying to see whether or not vaccines are responsible for an autism increase with one study after another showing that vaccines had nothing to do with this. James Gurney at the university of Minnesota published a paper showing a huge increase in autism diagnoses in correspondence to changes in federal and Minnesota state special education laws. Perhaps it is time for more study on the relationship between changes in the legal system and increases in autism diagnoses' Food for thought.

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