Testimony before the Massachusetts Joint House and Senate Committee on Education regarding the 2000 special education reform bills (S. 309, S. 208, and HR 2678), 15 March 2000
My son has autism. He also has a future, thanks to the current Chapter 766 regulations. In all the debate on "maximum feasible benefit" versus "appropriate education" I have not once heard anyone define those terms. An answer lies in my child's story.
Autism is an emergency. If treatment is prompt and guided by proven best practice, partial or even total recovery is possible. Delaying help, or using watered-down methods, all but guarantees a lifetime of disability.
We never took my son to the emergency room. Why? Because you [the legislature] made a rule: "Autism is an educational problem." Exit everything that makes American medical care the best in the world: a choice of doctors, exhaustive training, routine second opinions, and above all, accountability. Enter the world of special education: no competition, no choice of providers, and no means - none at all - to hold the providers accountable for their mistakes.
So we took our severely disabled son to the Brookline public schools, where an educational administrator and a social worker took responsibility for his future. They gave him a free and appropriate education. This is what happened after a year-and-a-half of their best efforts: he was another seven months farther behind age level, and had developed dangerous, aggressive behaviors. I choose my terms with great care here. I have talked to parents all over the country, and read dozens of court decisions, and I know that what they did to my son is entirely consistent with the definition of an "appropriate education" for an autistic child.
Fortunately for my son, we finally learned to expect much more. Thanks to the "maximum development" regulation we were able to change his program from "appropriate" to close to "maximum." This was no "click here for maximum development" - it took months of contention and thousands of dollars even to start the change. But we had no choice - it was either that, or no future at all for our child.
My son's sole "maximum development" goal is to attend school and learn alongside his friends with no special services. For children with autism or another severe disability, "maximum development" is nothing more and nothing less than equal access. It means they will receive all needed educational interventions to build their skills and overcome their deficits, so they might learn in the same classrooms with the same amount of help as every other child.
The contrast to "appropriate education" is dramatic. What is "appropriate" for autistic children emerges from the fine print of many court decisions. From a Minnesota ruling denying a parent's IEP appeal: "[The requested program] represented a best possible outcome, which exceeds the school district's responsibility in providing FAPE." From a Georgia ruling denying a child the same program my son receives: "the child has received the basic floor of opportunity".
Unless you have witnessed a child fail in an "appropriate" program and then succeed in a "maximum development" one, the legal distinctions appear incomprehensibly fine. The difference between ten hours and forty hours a week looks clear enough, but more and more cases outside of Massachusetts are being decided on the question of methodology - parents asking for proven one-on-one services, and schools instead providing the same number of hours in an "appropriate" program that - no surprise - requires one-quarter the staff.
Most autistic children in Massachusetts do not have a maximum development program. Those who do succeed only if their parents invest tremendous effort. To save our son we moved to the best district possible, and still spend many hours each week to keep his program running. We know that if anyone drops the ball, we have to pick it up.
You made the rules. You decided that certain severe disorders would be handled by the educational system rather than the medical professions. You decided not to allow competition, or choice, or malpractice claims. You decided to allow social workers to control the futures of autistic children. You decided to fund nearly the whole mess from local property taxes. You did a million stupid, dangerous things, only because unless you've lived it you can't begin to comprehend how hard it is to get it right for kids like my boy. But you also did one thing right: you made a law that says he has the right to maximum development, a shot at riding the bus and learning and goofing around in school, a chance to put his disability behind him and enjoy equal access to our schools.
There are serious funding problems, no question. We badly need special education reform. Don't kill a system that barely, almost works for those with severe special needs. I know you will find a way to streamline and strengthen the system without cutting the lifeline to my son's future.
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