When your child has profound autism, your life revolves around managing their care. You fight for services. You sit through evaluations. You answer questions that feel cold and clinical. And then, somewhere in a government system, a number gets assigned. That number, produced by a tool like the NJCAT, determines what kind of support your child receives.
But what if that number doesn’t reflect reality?
One Size Doesn’t Fit Anyone
The NJCAT (New Jersey Comprehensive Assessment Tool) is supposed to evaluate a person’s needs across three areas: self-care, behavior, and medical conditions. Sounds fair, right? But here’s the problem: it’s rigid. It relies on a point system that rewards only the most obvious signs of need, and even then, it can miss nuances that matter.
If your child doesn’t check the right boxes, their score drops. And when the score drops, so does their access to services. It doesn’t matter if your child is non-verbal, has daily seizures, or lives with a rare syndrome that most evaluators have never heard of. If it doesn’t fit the form, it might as well not exist.
My son has profound autism and DiGeorge syndrome. He is non-verbal, has epilepsy, bipolar disorder, OCD, and requires 24-hour care. Yet the NJCAT didn’t capture the complete picture of what he needs.
Because DiGeorge syndrome is rare, the system doesn’t know how to factor it in. Because my son doesn’t display aggressive behavior toward others, he gets a lower score—even though his medical fragility is just as urgent. It’s infuriating. And it’s happening to families across the state of New Jersey.
The Human Cost of a Miscalculation
This isn’t about numbers. It’s about real consequences. A lower NJCAT score can result in fewer hours of in-home support, reduced funding for residential placement, or denial of critical services altogether. That means parents have to fill in the gaps—personally, financially, and emotionally.
I’ve seen families quit their jobs, deplete their savings, and burn out trying to make up for what the state won’t provide. It’s not because the child doesn’t need help. It’s because a flawed algorithm says they don’t.
The System Needs to Catch Up
These tools aren’t just outdated, they’re dangerous when used as the final word on human needs. Here’s what has to change:
- Assessments must recognize rare and complex conditions
- Scoring should include caregiver input and real-world documentation
- Evaluators must be trained in medical and behavioral nuance
- Tools should be reviewed and updated regularly by people who live this reality
Parents shouldn’t have to explain, again and again, why their child deserves basic care, especially not to a scoring tool that was never built to see the whole picture.
We’re Not a Data Point
The NJCAT may see my son as a number. But I see a young man who lights up when we hug. Who struggles with things others take for granted. Who needs help, real help, every single day. And I’ll keep fighting for him, even when the system tries to say otherwise.
Because no algorithm gets the final say when it comes to my child, or yours.