Disabled Children Stand To Lose In Political Upheaval

WBUR Cognoscenti, February 8, 2017

A perfect storm of political challenges hovers darkly over disabled people, especially children. It shouldn’t come as a surprise that a president who would mock a journalist with a disability should now be responsible for the trifecta of disability rights upheaval. Congress just confirmed Betsy DeVos as education secretary, even though she made it clear that she knows little about special education. The Supreme Court is getting ready to decide how low we can place the special education bar and remain within the law. And Supreme Court nominee Neil Gorsuch has a record for taking an unfavorable view on disability issues. As a judge for the U.S. Court of Appeals for the 10th Circuit, Gorsuch ruled against an autistic student, overturning three previous decisions in the boy’s favor.

It’s a dangerous game of political limbo that our kids stand to lose. As a parent of both a severely disabled son and two other non-disabled boys — now grown and flown — I know firsthand that if we are to raise our children to be productive and independent as adults, then we have to prepare them well. Disabled children must be enabled to meet the same standards as their typically-developing peers. In fact, the federal law, Individuals with Disabilities Education Act (IDEA), started with the reality that disabled children were often treated as far less important and undeserving. Once the United States instituted public education, children with special needs were routinely kept at home, placed without support or adapted curricula in mainstream classrooms or institutionalized.

IDEA was created in 1975 as a way to improve this situation. And it did — dramatically. Now some children on the autism spectrum go to college. A 2012 study reported that about 35 percent of youth with an autism spectrum disorder had attended college and 55 percent had held paid employment during the first six years after high school. Although these children need a lot of support for their anxiety and other issues, the number is encouraging.

DeVos made it clear that she had not even a whisper of knowledge about IDEA. What does that say about this administration’s regard for students with disabilities? And what happens when the disabilities schools are seeing are extremely complex? By far, the largest population of disabled kids coming through the schools in the last decade is children with autism. Harvard researchers showed in 2011 that autism-related health care and education cost more than $17,000 per child each year in the United States, or $11.5 billion. Autism requires very specific approaches — such as smaller, quieter classrooms, one-to-one paraprofessionals, sensory, behavioral and speech-language specialists.

When my son Nat was first diagnosed with autism — in 1992, at age 3 — the Massachusetts General Hospital developmental pediatrician could not even tell us what treatment or education Nat needed. “You’ll know when it’s right,” he said cryptically. It wasn’t until Nat was 5 that we found a private school program where he developed, learning how to distinguish shapes, colors and letters.

His highly specialized education cost our town tens of thousands of dollars more than his peers. I am supremely grateful. Without that expensive, pragmatic (read: non-academic, individualized) education, Nat would never have learned the way the world works. He needed to learn about appropriate behavior in public, self-control, answering questions without echoing what was being said. And later, he learned how to prepare meals, keep himself safe, perform chores and work several jobs at a time.

By virtue of his specialized education, this child who could only twirl string and babble to himself at age 4 learned how to be a productive young man living in the community. Still very severely autistic, still highly challenged by behavioral, communication and cognitive disabilities, Nat shares staff with several other disabled people. He works landscaping, volunteers his time at Meals on Wheels and Buddy Dog, and he helps keep his home running. Compare that to where he would have been before IDEA — probably in the Fernald Developmental Center or Willowbrook. And that life would have cost much more public money. State institutions cost $188,318, compared to an average of $42,486 for Medicaid-funded home and community-based services.

Now so much more is known about autism, and schools are outfitted to teach guys like Nat. At the very least, the programs exist. But some students still require something different in order to thrive. Drew, the Colorado boy whose case is before the Supreme Court now, is one such student, like Nat, who finally got somewhere in school when he attended a private program. Drew’s parents, as we did, need for the school system to pay for it because they could not provide an equivalent experience.

What disturbs me more than a school fighting an appropriate education is an education secretary who does not know about the law that has been in place for decades. But DeVos is less permanent than Supreme Court judges. Justice Stephen Breyer said, “I foresee taking the money that ought to go to the children and spending it on lawsuits and lawyers. That is what’s actually bothering me.” Breyer should be more bothered by students not getting a competitive education, particularly children who need an advantage. So should Gorsuch. We’ve got to push for more, because it is the right thing to do. However, if we must be mercenary — and perhaps life in Trump’s America demands that — these children will cost society a lot more money without a good education.