Brooks is proof that getting a special needs child an appropriate public education here in New York City is possible. But then again, so is winning the lottery.
For a special education parent, the Department of Education is very similar to an insurance company: you're dealing with a large bureaucracy that has an inherent interest not to help you. Your HMO needs to make a profit and the DOE needs to balance a budget; your needs are, at best, an obstacle.
Although by law, the DOE is mandated to provide an appropriate public education in the least restrictive environment, their actions consistently support a different standard: the least expensive education. Whether they are re-organizing the special education administration once again, promising reforms without realistic implementation plans or hiring attorneys to fight the lawsuits of the parents they are failing, it would be a leap of faith to suggest they have every child's best interest at heart.
When Brooks was deferred to Central Based Support Team (CBST), which is what happens when the DOE concedes there is no public program for your child, we had several options: 1) A non-funded private school, for which we would have to hire a lawyer and sue the DOE for tuition each year, 2) A publicly funded private school for which the DOE pays a contracted tuition rate, or 3) Keep him where he was, even though, despite the staff's best efforts, he was anxious and he wasn't learning.
We determined very quickly that we could not afford the first option: we knew from other parents that regardless of whether you win or lose the annual lawsuit, you need to pay the full tuition out of pocket. And you generally only get a percentage back.
Even the remaining option had its challenges. Since there is always a gap between the DOE contracted rate and the actual cost of educating your child, many of the publicly funded privates ask the parents to donate the difference, which is easily in the thousands of dollars each year. There are some exceptions—and that's what we were hoping for.
Our CBST caseworker told us she would send Brooks' paperwork "to all the appropriate schools. And if a school wants to interview Brooks, we'll pay for car service as long as you give us sufficient notice."
Hmm...was the DOE truly going to help us with this process?
Our cautious optimism began to unravel fairly quickly. Our follow-up with one school revealed that the DOE had never sent the paperwork. Next, I began getting calls from schools I suspected were inappropriate for Brooks; one was three hours away via public transportation. Still, I took a morning off work and took the tour myself without Brooks. As I had suspected, although it was a good school, it was not appropriate for him.
At this point that the DOE's "help" went from bad to worse. Our caseworker advised me to take Brooks to visit the school even though I had already ruled it out. In a phone call that practically brought me to tears, I asked her to explain how that would possibly be in anyone's best interest. Where is the logic in pulling Brooks out of school for a visit that would naturally make him anxious to a school my husband and I realized was not the right fit?
She responded that if I didn't take Brooks, it was her job to report to the Committee on Special Education that we didn't follow through with this school. This was her job? I thought her job was to help get my son an appropriate education.
At this point, any shred of optimism we had left with regards to the DOE disintegrated. They had now morphed back into the unfeeling bureaucratic giant that threatened our son’s well-being. And by now there were at least two inappropriate schools that they wanted me to take Brooks to visit!
A lawyer we consulted with agreed that it would not be in our best interest to refuse to take Brooks to the visits: she suggested having the schools call the DOE to rescind their requests to see him, and also to plead our case in writing to our caseworker. Thankfully, the schools agreed and they took care of it.
Despite a stressfully uncertain spring and summer, our number one choice, Learning Spring offered Brooks a spot in the final week of August. They apologized for the lengthy admission process—the DOE didn't approve their additional classroom until the 11th hour.
Alas, our happy ending is not the norm. Many parents with limited resources don’t understand what their special needs children are entitled to, much less how to go about fighting for it.
I have often thanked the DOE for funding my son’s education: from pre-K and outside therapies to the ASD Nest program. But I am finally realizing that I shouldn’t be thanking them any more than any neighborhood parent who sends their child to a public school. In fact, they should be apologizing to me because they have no appropriate program for my son.
Actually, I want something better than an apology: I want them to start doing their job.
I'm generally a "glass half full" kind of person, but I also never deny that the glass is half empty. For those of us whose kids are unlike their typical peers, there is plenty of pain and suffering to go around, and for the DOE to pile on more is simply adding insult to injury.
Although we special education parents have been beaten down by a system that has been broken for many years, we're a resilient bunch. Our kids need the DOE to be fixed, so somehow, we'll figure out how to fix it. Ideas, anyone?