Testimony before the Massachusetts Joint House and Senate Committe on Education regarding the 1998 special education reform bill (HR 5220)
There is a story we’ve all heard and most people believe—our special education system serves the ‘truly needy’ children but is suffering under the strain of parents who manage to get services their children either don’t need or don’t deserve. You’ve read this story in the newspaper, heard it from school administrators, had it confirmed by special education directors. But there’s another story you won’t hear unless you listen to the parents of the children our special education system was designed to serve.
My son is a very intelligent and loving child whose favorite activity is being in Kindergarten. He also has autism, a disorder that limited his ability to learn and communicate so severely that at age 3 he could talk and play barely at the level of a toddler half his age. Despite the urgency of his condition, the Brookline school system at first decided his right to ‘maximum development’ called for only two sessions a week of group speech therapy. At first we trusted the school’s experts, but as he continued to fall further behind his peers we realized we had to learn and do more.
Over the next year and a half we gathered information and independent evaluations that showed he had the potential for normal functioning if he had a full-time program based on applied behavior analysis. Such educational programs were developed over twenty years ago and proven effective for recovery from autism in numerous scientific studies. This research was rejected by every administrator in the school all the way up to the Superintendent. When my wife related with much emotion how badly the school was failing our child, one administrator advised her to "get some counseling."
We did—legal counsel. We decided to implement the program ourselves and began a court battle. We knew we would win, largely because we had both independent evaluations and court precedents for such ABA programs, based in part on the ‘maximum development’ regulation.
Nine months and tens of thousands of dollars later we got our son most of the services he needed, although the school system continued to expend considerable effort resisting the recommendations of the experts on autism. We decided to move to another town with a proven record of implementing effective programs to give our son the best chance of educational success and a happy, normal life.
My son’s measurably increasing progress has made these very difficult choices worth while. You may believe that "pushy" parents demand more services to make their own lives easier or shift costs to the school, but it would have been far easier and less expensive for us if we had stayed with the school’s inadequate program.
How many other parents have the thousands of dollars and hundreds of hours to spend when a school is unwilling to do what is needed to help a truly serious disability? How many parents have the option to relocate to save their children? The current right to effective services and independent opinions offers only the barest of safeguards to many children at risk. We have heard from dozens of families around the country whose children are being abandoned—as ours almost was—to a lifetime of disability under the standards you are considering adopting.
There is only speculation that the proposed changes will save money, but there are many more stories like mine that show the importance of the rights to maximum development and unimpeded access to independent evaluations. I urge you to study what has happened to disabled children in Massachusetts and elsewhere before you remove those needed protections.
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