Please Hold. No One Will Be With You Shortly

Like a watched pot that refuses to boil, an RSA won’t materialize until you’ve abandoned all hope that it ever will.

For the uninitiated, an RSA is a Related Services Authorization, essentially a slip of paper that gives a parent the official nod to have a state-approved therapist begin sessions with his or her special-needs child.

An RSA can be issued for several reasons; we’re waiting for one because Jack’s school is unable to fulfill his mandate of three weekly OT (occupational therapy) sessions. Since they can only accommodate one per week we are entitled to receive the other two outside school hours, paid for by the Board of Education.

Sounds simple and straightforward, right? Not so fast. I’ve renamed the RSA to better reflect reality: Really Slow Acquisition. But it turns out that my situation is quite universal. A mom on the Brooklyn Special Kids Yahoo! Group whose son recently aged-out of special education attempted to offer solace:

“Getting the RSA in hand was an annual struggle....In theory, [it] would be mailed to you as a matter of course from the appropriate district.” The subtext? Prepare for battle.

She also gave solicited advice, detailing her back-to-school ritual for obtaining an RSA. Brace yourself—it isn’t pretty:

“The only thing that ever worked was to show up in person each September, smile and be pleasant, ask to speak to so-and-so who handles RSA's in that district, and wait to speak with her," she told me. "I'd be asked if I had an appointment, and no—I didn't—because the woman responsible never responded to phone calls or E-mails, and her voicemail was full (she told me she didn't listen to it anyway), so it was impossible to get an appointment." 

She continued: "Showing up and being pleasant and stifling my outrage was the only thing that worked [italics added]. I had to be prepared that it might be a wild goose-chase if she wasn't in the office that day. [But] I always got what I needed.”

And that, my friends, is a typical experience for any parent in need of an RSA.

This is the second year in a row where I’ve had to doggedly advocate for Jack’s RSA, but this time was a bit different. Last year he transitioned from pre-k to kindergarten, meaning that the administration and funding of his therapy switched hands from the state government to the Board of Education. And since his IEP (individualized education program) now follows the school calendar, he no longer receives year-round therapy.

This summer was the first time since he began therapy at age one (he is now six and a half and in the first grade) that he didn’t receive any OT or PT (physical therapy). He’d never gone longer than a week or two between sessions.

Two months is long enough for his muscle memory to lapse and his joints to stiffen; long enough for his arms and legs to become unaccustomed to manual stretching and other physically challenging exercises he’d rather not do; and long enough to make him question why he has to do it in the first place when he didn’t have to do it for two months: "Hey, I was fine without it all summer, why do I need it now?" Jack might be thinking.

So, as you can imagine, I was anxious to get started again and yet I knew from last year that the RSA wouldn’t arrive until I put my foot on the gas or, better yet, dangled it near some bureaucrat’s behind.

At my first attempt last year, other parents who’d “been there, done that” warned me that an RSA doesn’t come easily, if at all. They told me I’d have to fight for it.

Advocating for your child is one thing, but having to breathe down the necks of administrators at the BOE to the point of harassment and fatigue, is ridiculous. In fact, it’s one of the most time-consuming aspects of parenting a child with special needs. I’m sure other parents will agree that we often feel like the proverbial hamster at the wheel. It’s advocacy to the point of lunacy.

Another post from a mom on the same message board perfectly illustrates the Gumby-esque contortions we will resort to. Seeking advice on how to obtain her daughter’s RSA she wrote, “I’m trying to figure out who I should bug to get my daughter’s RSA in a timely manner....”

Yes, this mom’s been forewarned that it’s all about being the best pest you can be. I pity the parent who relies on the system to work as it should; the parent who doesn’t have the time, skill or means to advocate incessantly for their child. That parent and his or her child can easily fall through the cracks.

That mom went on to say, “I’ve been told I should just show up in person at the DOE rather than attempt [it] over the phone....Do I show up at the District office or at Livingston Street? Any advice appreciated. Ah, the joys of transitioning to CSE.”

Her last line sums up the fatalistic default mode of most parents: dark humor. It’s what gets us through the day, the week, the month, the eternal hell that is navigating the red tape of the BOE. Which is why I’m glad there are other parents in on the joke. Otherwise it might not be so funny.

P.S. We got Jack’s RSA the day this article posted.

P.P.S. For parents out there just getting started in the world of special needs, go directly to Big Apple Oranges. A local mom recently created the site and is quickly becoming the go-to resource for New York City families. It’s a labor of love and it is phenomenal.