Running Out of Time and Options

clock-611619_1920I am now in a place that I’d hoped at all cost to avoid.

There is no available space in any of the five non-public schools (NPS) focused on autism spectrum disorder that I visited. Nothing. We have been waiting since February 1, 2016, and while my daughter is still at the top of the wait list for one or more of these schools, they have been unable to free up space to accept her.

How is it possible that in the San Francisco Bay Area there is simply no room after a nearly seven-month wait? Katie is now living proof that demand has far outstripped supply for autism services.

The problem is not just here, but everywhere. Those of us that live with the disorder know that services are difficult, if not impossible, to come by. Katie had to switch health insurance this year, which means we lost our awesome in-home team. The wait list for a new provider will be one to two years! No one I spoke to seemed embarrassed or dismayed by this piece of information, but I can tell you, as a parent, it is simply unacceptable to wait that long for essential services. Something has to change.

no-1513027_1280But for now, I’m focused on the school situation. In our district, school begins next Monday (i.e., in four days) and Katie does not yet have a placement. When I suggested that we continue the in-home “school” program that worked so well over summer, I was told no. I wasn’t given a reason, just that they would not consider it. The district wants to place Katie in one of the non-autism-specific NPSs they dragged me to last spring. Schools I rejected as being inappropriate for numerous reasons. But these are the schools with available space.

If that wasn’t bad enough, the NPS in question is located in a rough part of Oakland. Not the worst part, but just blocks from where a friend was robbed at gunpoint a few years ago. In other words, not the kind of place you want your child spending every day if you can help it.

In addition, this is a generic NPS that doesn’t seem to know much about the many “flavors” of autism. When I told the Program Director that Katie had a lot of sensory needs,  she said, “Ummm, that’s spelled out in her IEP, right?”

No, it’s not. And you shouldn’t need it to be.

The teacher had no idea what a multi-sensory reading program was and described the many life skills she taught. I smiled politely when I wanted to shout: Don’t teach Katie how to do laundry. Just teach her to read!

Supposedly the NPS is adding a sensory gym, but as far as I know, it hasn’t happened yet. What was there when I visited was totally insufficient to meet Katie’s needs. There is a park located nearby, but this is a crappy part of Oakland. Plus the park is further away than the one located adjacent to Katie’s previous school. The park no one wanted to take her to because it was “too disruptive.” But I’m supposed to believe that will change at the NPS. Right.

boy-529065_1920Furthermore, the NPS is part of a chain of schools with a for-profit business model. Yes, you read that correctly. But again, I’m supposed to accept that this won’t negatively impact Katie’s education (or lack thereof). Actually, I’m not even supposed to know that fact, but it’s amazing what you can learn when you ask a lot of questions.

If that weren’t enough, the Program Director put me on notice when I visited by stating, without a hint of irony, “We get a ton of kids here with way too many services.”

Really? This statement was so contrary to everything I know about special education that I was speechless. It was a huge red flag, and I haven’t forgotten it. No way am I putting Katie at a school that wants to cut back on her hard-won services so it can MAKE MORE PROFIT. 

For all those reasons (and more), I was hoping against hope that a slot would open up at an autism NPS. But so far, it hasn’t. My district’s Special Education Director assured me that she “would consider transferring Katie to a preferred school if space opens up,” but suffice it to say, considering a transfer is not the same as agreeing to do it, and the for-profit NPS is sure to fight a move.

On the other hand, I’m anxious to get Katie out of the house so she and I are not so isolated. I’d like to focus on work, not serve as an unpaid aide for the school district. But not at the cost of a terrible placement.


My intuition told me to say no. But what kind of parent says no to school?

I felt trapped and scared. On a lark I searched online for a school that uses rapid prompting method (RPM) and discovered the Open Mind School. It’s California’s first full inclusion school. The description reads like something out of a dream, and I can’t wait to see it in person. I’m hoping this will be the solution I’ve been praying for.

Until next time,

About Cynthia J. Patton

Writer, Editor, Advocate, Speaker, Special Needs Attorney, and Autism Mom. Also the Founder and Chairperson of Autism A to Z, a nonprofit providing resources and solutions for life on the spectrum.
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