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In NYC’s Special Education Labyrinth, Families Need a Guide: For Proof, The Heartbreaking Case of TJ.

This is a guest post by Ariela Rozman who co-founded EdNavigator, where this post originally appeared. Before that, she served for eight years as Chief Executive Officer of TNTP.

In October, The New York Times shared the heartbreaking story of TJ, a child with special needs who had been left behind by New York City schools. Heartbreaking because TJ is now 12, yet still reads on a first grade level and only recently began receiving the support services he has desperately needed for years. But also heartbreaking because his story so vividly shows how students and families can still get lost in our education system, even when they do everything they’re supposed to and resources are in place to help them.

After all, this is not a case of an inattentive or neglectful parent. TJ’s mother became concerned about him when he was two — she knew something was not quite right. She reached out to her pediatrician immediately.  

Neither is this the case of a system with no supports for children with special learning needs. As a toddler, TJ was enrolled in New York City’s Early Intervention program, which provides intensive services for young children during the critical early phases of child development.

Nor is it the case of a school system that lost track of a student. TJ never disappeared from the city’s radar; he continued getting evaluations, though some were significantly delayed and only done after being pushed.

But there was one major problem: None of the evaluations identified TJ’s true diagnosis, intellectual disability. As a result, TJ had a concrete and specific Individualized Education Plan (IEP) that schools were working to follow — but the plan was based on the wrong diagnosis.

The failure to accurately assess TJ’s needs harmed his educational progress permanently. He went to school after school, sometimes receiving the services deemed by the plan and sometimes not, but never getting the services that he truly needed.

The article points to the myriad solutions that could help provide a real education for the city’s children with special needs – better tracking systems, better diagnoses, better compliance by schools. But even if all these things worked perfectly, it’s easy to see how a child like TJ could still get left behind.

I would propose an additional solution: Better support for TJ’s family. The article shows how intimidating it can be to navigate the complexities of a massive bureaucratic system, anticipate challenges and upcoming decisions, and ensure progress is being made. TJ’s mother had to do it by herself.

Imagine if, from the time she first raised concerns about TJ’s progress at age 2, she had access to independent guidance from professionals who understood her concerns, helped connect her to the right supports (such as Advocates for Children of New York), tracked TJ’s outcomes, and pushed for the right strategies to be implemented consistently over the course of a decade? For starters, this person could have pushed for a reevaluation and re-diagnosis for TJ when it was clear no progress was being made. Or assured that TJ’s mother was only considering schools that could provide the supports mandated by his IEP.  (In theory, the city’s “Single Shepherd” program could be part of this solution, but it is unclear whether people employed by the school system itself can ever be truly effective, independent advocates for families.)

As we look to strengthen our school systems, let’s not forget about the need to strengthen each family’s ability to access and navigate those systems. TJ’s mom didn’t need someone to tell her to worry about her child and seek out solutions for him. She already knew that. She needed someone to help her find those solutions, illuminate the path ahead, and advocate for her and her son when it really mattered.

What do you think?

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