Today is World Down Syndrome Day. I didn’t know this until my son told me last night, after conferring with Siri, whom he consults with about every holiday that he considers significant. (Today is also National Day of Forests and World Poetry Day, by the way, and tomorrow is World Water Day.) Jonah doesn’t have Down Syndrome but he does have a genetic mutation called Fragile X Syndrome. For Jonah, his disability presents as a variety of developmental delays, ADHD, social anxiety, and other afflictions that interfere with his cognitive and social development. He’s hard to teach and even harder to assess.
In other words, his teachers (and parents) struggle to hold schools responsible for providing adequate educational programming, a common scenario in the education of children with developmental disabilities. Typical kids are different too , of course, despite popular books like What Your Third Grader Needs to Know. But kids with disabilities are even more different. Put together half a dozen kids with the same diagnosis (Down Syndrome, Fragile X Syndrome, autism, etc.) and their aptitudes will often be wildly divergent. Some go to college. Some are non-verbal. Some, like Jonah, read well but flounder with the abstractions of simple addition and subtraction. In order to accommodate these differences, goals, objectives, and measurements of progress are embedded in their Individualized Education Plans (IEP’s, which are crafted by Child Study Teams). But this system only works if teachers, therapists, and administrators are held responsible for providing the services and meeting the metrics of those IEP’s.
Another word for this kind of responsibility is “accountability.”
Most districts struggle with accountability (for special ed kids as well as neuro-typical ones) but New York City takes a hard task and makes it almost impossible. As reported yesterday in the Daily News, “the public schools’ digital Special Education Student Information System — better known as SESIS — deprives kids of needed services while costing the city millions.” SESIS has a long history of problems and recently acquired more debt when the UFT negotiated a settlement with the DOE to pay members $33 million in back pay because they spent “many hours outside their regular workday since 2013 logging student data into the system.”
But those who suffer the greatest harm aren’t the teachers but the children, And there are more of them than you might think.
According to 2015 data, of the 1.1 million students in NYC public schools there are 186,000 children with IEPs in district schools, another 12,700 students with IEPs in charter schools, and another 7,500 children in state-approved private schools. Students with more severe disabilities attend schools in District 75 (310 locations with 24,000 students). The City’s inability to maintain accountability does a grave disservice to students with special needs. How grave? When Mayor Bill de Blasio took office, not only did he eliminate the A-F grading system for schools, which gave parents transparent if reductive summations of school quality, but he also halted distribution of school profiles for District 75 schools. The DOE only began releasing these reports this past July.
“There’s no information for you to make your own assessments outside of visiting the schools in person,” said Lori Podvesker, a policy manager at INCLUDEnyc, a support agency for young people with disabilities, and whose son attends a District 75 school in Manhattan. “That’s so fundamentally wrong.”
“You’re sort of letting those schools off the hook in terms of any accountability measures,” said Kim Nauer, education research director at the New School’s Center for New York City Affairs.
Other problems plague NYC’s educational system for students with disabilities: disproportionality (“of the 186,000 children with an IEP in district schools, four out of five are either Hispanic or black, two out of three are boys and one out of six is an English Language Learner”); lack of transition services like job training; lack of appropriate transportation; and unlawful delays in evaluating and providing therapies necessary for educational advancement, particularly for low-income children.
Other school systems share these lapses. But with the Trump Administration and the Republican leadership enamored by an anorexic U.S. Department of Education, accountability will inevitably shift to states and cities. The repercussions for all children are dangerous, and no more so than for students who are easily glossed over and rendered invisible. World Down Syndrome Day indeed.