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Autism Education and NCLB -- Collision Course

The New York Times has a report on the difficulty parents of autistic kids have in finding appropriate education programs.

The very best educational programs involved very intensive one on one teaching. Those programs are both rare and expensive:

Education — highly structured, virtually one-on-one and thus astronomically expensive — is the one proven treatment for autism, experts say. But it is no guarantee. Examples of exceptional success — and a narrow window of opportunity — have frantic parents trolling the Internet, visiting any school that sounds promising, winding up on waiting lists and often moving or suing their school district to get what they want.

I am worried about the future of education for autistic kids because of the confluence of three factors, anmely, the cost of a quality education, the increase in the number of autistic pupils and the perverse incentives of No Child Left Behind.

First, the programs that actually work are very expensive. As the Time’s notes, the gold standard for educating an autistic child is an intense, one on one learning program. That type of program, according the expert cited by the Times, can run to $60,000 per child per year. That is in line with my experience.

We spend about $7,200 per child per year on k-12 education. Thus, it costs almost nine times more to educate an autistic child than a typical child.

The second factor that causes me concern is the increase in the number of autistic kids in need of a quality education. The Times notes that in the last decade, the number of autistic kids seeking an education has increased from about 20,000 to about 120,000.

The cost of a good education plus the increase in the number of kids seeking services puts autism education on a collision course with political reality. The US Department of Education spends about $53 billion per year on k-12 education. If we provided a top drawer, $60,000 per year, education for each of the 120,000 autistic kids, the cost would be about $7.2 billion dollars per year or about 13.5% of the budget of the Department of Education.

There are about 47 million k-12 students, so the autistic population comprises about 0.2% of the students. Is it possible that the 99.8% of the population will permit 13.5% of the federal money to be spent on 0.2% of the students? I think not.

Of course, we do not now provide a top quality education for anything like all of the autistic kids. The Times’ expert estimates that only one-tenth of the autistic kids are in such programs. That is unlikely to change dramatically. The current situation in which some schools provide quality programs for autistic kids while others do not will continue.

Given that fact, what do POA’s do? They shop for the best programs for their kids, of course and they make almost any sacrifice to get their kids into good programs. The Times reports:

Some private schools that accommodate a mere 25 children have waiting lists with hundreds of names on them. The best public school programs are besieged. There are not enough certified behavioral therapists, so promising aides are trained in the classroom and then fought over, like prized nannies, by parents seeking after-school and weekend help. Dr. Fred R. Volkmar, an autism researcher and diagnostician at Yale University who has a three-year waiting list to see new patients, said even the wealthy are not protected. "I see mega-mega millionaires and movie star folks who can't find anything to tap into," he said.

The Times reports on the experience of the Lombardi family. They were willing to make many sacrifices to have their child in a quality program.

When Phyllis Lombardi lets her 6-year-old son, Joey, play in her yard here, she cannot take her eyes off him because he is autistic, barely speaks and might bolt into traffic.

But a fence costs more than the Lombardis can afford since they moved to this Westchester County village last year. Ardsley has state-of-the-art autism programs, but also real estate prices that have forced the family into a rental just a block from the Saw Mill River Parkway.

It was desperation that brought the family here from Rockland County, when Mrs. Lombardi joined an army of parents, their frustration growing as their numbers increased, facing a crisis of supply and demand when their autistic children reach school age…

It took three years for Mrs. Lombardi to find Concord Road Elementary School here. She called hundreds of strangers seeking advice. She sent bouquets to school secretaries who parted with nuggets of information about teaching methods and staffing ratios. She sneaked into back-to-school nights to see if the special education students were hidden in the basement.

Eventually, Mrs. Lombardi decided that Ardsley had the best programs around, so good that districts from New York City to Rye Neck pay tens of thousands of dollars a year to place severely autistic children here. Joey would have his own aide to help him sit still, a classroom partitioned into quiet learning spaces with 10 adults supervising 11 children, private speech therapy four times a week and exposure to ordinary kindergartners at lunch and recess.

But to make it work, Joey's father, Nicholas, is working 15-hour days as a ticket broker and Mrs. Lombardi has had to take a part-time job as a receptionist. In addition to the costs of living here, there is Joey's out-of-school therapy, which sustains his fragile progress and can cost a family $20,000 to $40,000 a year.

My experience with POA’s suggests that the Lombardis are not atypical. POA’s will do almost anything to help their kids.

When limited resources guarantee that only a few schools will have good education programs for autistic kids, the parents of autistic kids will flock to those schools. Into that mix comes No Child Left Behind.

It is my understanding of NCLB (and I am no expert) that special needs students are one the sub-groups that NCLB requires to be tested. If acceptable progress towards academic achievement is not made within that subgroup, the school is labeled a “failure.” Most principals, teachers and parents do not want their school labeled a failure.

So, if a school is considering creating a top notch program for autistic kids, they will consider the NCLB consequences of that program.

If they build it, the POAs will come and bring their kids with them. Any school that decides to provide a quality program for autistic kids will, within a few years, be labeled a “failure” if the autistic kids are unable to make sufficient academic progress on standardized tests. Such progress seems unlikely.

My son, for instance, may be required to take tests next year for proficiency in writing and science. He can not talk, nor can he write, nor does he give a tinker’s damn about the NCLB requirements. He is far more likely to tear up the test and chew the pencil than to even attempt to answer any questions. Bobby will not raise the school’s average.

If they build it, we will come and then they will be called a failure for providing my son with a good education. From the point of view of the school, perhaps it would be better to just have a lousy autism education program. We will then flee and they can be deemed a success.

The better the program for autistic kids, the more likely that the school will be deemed a failure. The worse the program for autistic kids, the more likely the school will be deemed a success.

I do not anticipate a stampede to create really good education programs for autistic kids. That is one perverse way to run an education system

Posted by Dwight Meredith at January 30, 2004 12:17 PM | TrackBack