Thanks For Asking

Guest post prepared for Cynthia at Reaching for the Stars

Why, you ask, aren't there more doggone clinicians out there who specialize in comprehensive CP care?

Great question! 

First off -- I think I may have a good sense of why you'd want to know. I'm a dad of a beautiful (had to get that in there) daughter with CP. Of course, I want the best for her. I'm also eleven-plus years into it now, and I've learned, through trying and erring, just why they're called "complex" special needs. Hardly anything about 'em is as simple as one would hope.

Let's take a quick early detour:  

Cristin Lind is the special needs mom behind the enlightening blog, Durga's Toolbox. Last September she posted this care map (below) that she had drawn to communicate the "spider web" of connections she navigates in the course of raising her son. If you haven't already seen the map or done a similar accounting, I bet you'd be surprised at the number of connections, especially in the health arena, you're juggling yourself. 

More about how you may be able to use your own care map to get things moving in a simpler & saner direction at bottom.

Wouldn't it be a lot easier to have just one go-to doctor? To be able to turn to a single medical pro who understood both your child's history and challenges -- and all things CP? Someone capable of integrating everything that needs to be integrated and responding with appropriate care? 

Dr. Lisa Thornton ten-fours the idea. In writing for RFTS's 30 Days of Inspiration, Motivation & Information Series, she says "it’s critical for parents to find a health care practitioner who is familiar with the management of Cerebral Palsy and who can help them sort through the best options for their child." She also notes that pediatric physiatrists are "specially trained for this" but that they, unfortunately, are rare.

Bummer. 

Jibes with my own experience of: 

• searching last summer for an authoritative answer to the question Should my child be under the care of a physiatrist? 

• trying to track down a real, live one to talk to, and 

• all but striking out. 

When I eventually did encounter one of these elusive birds, I was somewhat disappointed. The doc I met didn't seem to want what I wanted: (which was) for him to take overall charge of my daughter's care. He wasn't a coordinator. Instead, he saw himself as the "spasticity guy" and he was quite happy to defer to the neurologists, developmental pediatricians, etc. with whom he practiced. Despite having been intensively and holistically trained in those fields himself.

Your results may vary. 

For me, the jury's still out as to whether or not there should be a push for more of these specialists. In the meantime, I'm back to the drawing board wondering: 

Maybe my daughter would do just as well without a physiatrist? Maybe the team care she's already privileged to receive (the kind offered via hospital comprehesive CP programs, independent therapy centers, intermediate care facilities, etc.) is workable? Maybe the focus should be on improving the ways clinical teams operate? 

Truth be told, those aren't the only "Maybe"s that come to mind. I can go in any number of directions on this. Maybe, for example:

• we should ask practicing physiatrists to tell us more: Do you feel comfortable in the role of key care coordinator? Would more kids with CP be better off if there were more of you scattered about? 

• a parent survey is in order to learn how needs are or aren't being met via current care arrangements? 

• the focus should be on parent education? Maybe there's a way -- thinking way, way outside the box -- parents could become junior physiatrists themselves?

*  *  *  *  *

“Some problems are so complex that you have to be highly intelligent and well informed just to be undecided about them.”*

Why aren't there more CP specialists out there? 

Still a great question. 

Like CP itself, though, it's complex and "wicked." It's not strictly technical. There's no one, straightforward answer. Aside from posing it and adding my two cents, I'm not sure what more to do with it.

Now that the question's been formulated and made public, however, maybe some better equipped individual or organization will pick up on and wrestle with it. Maybe one or more of my follow-up questions will trigger the same. That's my hope.

My main message is this:

I'm as naive as they come. But I'm pretty sure that no upper limit to the number of CP specialists has been set in stone for all time. The situation is fluid. That physiatrists are rare isn't the respsonsibility of United Cerebral Palsy (UCP). There's no AAPMR (physiatry's medical society) conspiracy. This has nothing to do with Reaching for the Stars (RFTS). The reason there aren't more specialists is that we parents haven't been piping up. 

It really comes down to me and you.

*  *  *  *  *

All I really know is I want my daughter to thrive. I believe asking questions can help.

For good solutions to emerge, you have to ask questions to which others can (and wish to) respond. That's how things get moved along. That's how you chip away at complex problems like ours. You ask questions -- no matter how naive an "asker" you are -- and you hope to learn your way to better and better answers.

It seems to me a questing disposition is key.

*  *  *  *  *

The care map concept has taken on a bigger life since Cristin first unveiled hers. More and more it's being recognized as a valuable tool both for parents and their "provider teams."

Benefits for parents include: gaining a better understanding of the care landscape to be navigated, and growing new skills /capacities. (It's empowering.) For providers, e.g. health professionals, care maps help them to "meet families where they are" and may, in turn, lead to better care-coordination solutions and health outcomes.

There's a widespread belief that a gulf exists between the amount of health care needed in the world and what's actually being given. So, health care is being redesigned everywhere with care coordination a top priority. Boston Children's Hospital has taken a particular interest in moving in this (family-centered) direction and partnered with Cristin. As a result, two specific things you, as Juggler-in-Chief, can do now that you couldn't just a few months ago are: 

• visit the hospital's care mapping page

• download a care mapping how-to guide to learn how to create and use one yourself!

*Laurence J. Peter, author of The Peter Principle