When my son Jonah was a few months shy of three years old, our Central New Jersey school district, which had no appropriate programs for a toddler with multiple disabilities, sent him to a county preschool handicapped program. My husband and I were new to the world of special education (our three older children are neuro-typical) and blithely signed the paperwork. In November we went in for a parent-teacher conference with his teacher and case manager. The teacher told us that Jonah would never speak, had no imitation skills, no ability to play imaginatively, and no interest in engaging with other children.
We went home in a daze, teetering between despair and anger. The next day I made a videotape of Jonah identifying letters on a preschool computer game, imitating his eldest sister as she played piano, trying to play ball with his brother, and pretending to cook with his other sister. We sent the tape in and asked his teacher and case manager to watch it. I waited two weeks for a response and, receiving none, called the case manager and asked her what she thought about the contrast between the teacher’s low expectations for my boy and his nascent abilities on the tape. She said cheerfully, “your daughter plays the piano so well!” Thanks, I said, but what about Jonah? “I don’t see any contrast,” she said.
This scenario, one that I’ve heard echoed among other parents, is what worries me about New York State’s plan to measure academic growth of kids with special needs. Under its new plan to comply with the federal law called the Every Child Succeeds Act (ESSA: for explainers, see here and here), New York has requested a waiver to let it give students with moderate to severe cognitive disabilities tests that are not at their grade level but at their developmental level. According to Chalkbeat, “state education department officials say this will provide schools with more useful information about what students have actually learned, while other supporters say it will spare those students from taking tests they have no chance of passing.”
On paper this sounds logical, even kind. Why subject children like Jonah (whose disabilities stem from a genetic mutation called Fragile X Syndrome) to frustrating tests they can’t possibly pass?
Because sometimes the subjective judgments of experts are wrong.
That’s what’s bothering fifteen special education national advocacy groups about New York State’s proposal. Maggie Moroff of Advocates for Children said, “the waiver would give schools the opportunity to lower standards for students with disabilities instead of rising to the occasion.” That’s what’s bothering the Consortium for Citizens with Disabilities Task Force, which argues, according to Education Week, that “the request is a clear violation of ESSA, which says that states must give all students a test aligned to the standards in the grade in which the student is enrolled. They also say the waiver could lead to discrimination, segregation of students with disabilities, and would mask the performance of students in special education.” That’s what’s bothering New York City’s Department of Education, which wrote a letter to the State that says, in part, “it has been our experience that once we make a decision that a student is not able to take grade-level assessments, the likelihood of them being able to meet standards over time is significantly decreased.”
Last week the Hechinger Report published a story that profiles kids with disabilities and their parents who were failed by their local public schools because of low expectations. No doubt there are plenty of families who are happy with their child’s program. But of the 6.6 million public school children enrolled in special education in the U.S. (13 percent of all public school students) many are not happy. According to Hechinger, “experts estimate that up to 90 percent of students with disabilities are capable of graduating high school fully prepared to tackle college or a career if they receive proper support along the way.”
In New York State, just under 53 percent do. Only seven states have lower percentages.
Meanwhile, the field of neurodiversity is exploding. We’re learning more about differences in processing information, memory, and cognition. We’re starting to look at some disabilities — high-functioning autism, for example — as not a pathology but a natural variation. And even parents of children with moderate to severe disabilities will marvel, “I never knew she understood this” or “I didn’t think he could do this.” When raising a special needs child, never get comfortable with estimations of ability. They surprise you all the time.
The staff members we encountered at Jonah’s preschool weren’t prepared to be surprised. They had Jonah nailed down: he wouldn’t do this and he couldn’t do that. And that’s what New York State’s request for an ESSA waiver does: it nails down kids with disabilities to a low bar and locks them in. Sure, tests that are too hard can be frustrating. Life is frustrating. Have enough respect for our kids to presume that they can handle life.
We made that presumption for Jonah. With the support (and checkbook) of our district, we transferred Jonah to a private special education school called Rock Brook where the bar was set high. He took state standardized tests, did poorly every time, and suffered no trauma. In seventh grade he transferred to our local middle school and graduated from high school. While he’ll never live independently, he speaks very well, reads, writes, manages money, is my go-to guy for any computer problem, is in a vocational training program, and has a best friend.
New York, give our kids some credit. Rescind the waiver request and raise the bar.