PRE-FIGHT: Let's Glove Up

Here's how my pea brain's mind's eye sees things:

ON ONE HAND

We have various organizations and institutions, for and not for profit, that are committed to fighting the Cerebral Palsy fight and improving outcomes as they relate to CP. 

To me, they look to be doing bang-up jobs: pounding away at key challenges and opportunities; landing their share of punches. Becoming...thanks largely to advances in fields like genetics and robotics and brain science...encouraged and emboldened -- even to the point of believing that theirs-and-ours is a winnable battle. Even in the previously inconceivable sense that CP will someday be both preventable and curable. 

I'm excited along with them. 

I'd be a lot more excited if I knew that their various visions were about to be realized, say, this week. Even a year from now would be a more than acceptable time frame. 

Unrealistic? Could never happen? 

Maybe. 

Who's really to say? 

At a bare minimum, I don't think it's too overly whacky to suggest that big things could conceivably happen in the CP arena sooner rather than later and that, furthermore, we all ought to open our minds' eyes -- wider than they are now -- to what's possible. 

ON THE OTHER HAND

Over the past few years, I've immersed myself in enough management writing to have at least a feel for who the more influential thinkers are and what they're thinking about. What interests me most is their work on helping organizations get smarter and better, faster. (much of which is intimately tied to disruptive technologies like cloud computing, social media, mobile, and big data)

How're they doing? 

They're figuring things out. They're making discoveries. They're experiencing some wins. 

Many of them are fired up about what's possible, too. 

I'D LIKE TO RECOMMEND

We in the CP sphere should take greater advantage of what those management gurus -- those business brainiacs -- have to offer. 

Why's that?

Because CP has been kicking our butts. 

No offense to any one individual or CP organization, but -- we need help. All the help we can get. Why fight with one hand tied behind our back if we don't have to?

The good news is that the products of those folks' energies and efforts are more widely and readily available than ever before. They're there for the taking. So, too, are the opportunities for making personal connections. Accessing them, and attracting them to us and our "defeat CP" cause, should be straightforward.

We'll have to strive as a group, however, to become more:

1. OPEN

At the risk of exposing my own biases and nincompoopery, I am (via this post and this blog) putting myself out there in hopes that someone will come along and help me become a better / smarter CP fighter. Our orgs need to follow suit. To "get back," we need to give. We need to offer up our challenges and opportunities, our responses and results -- the whole of it -- to critical thought and commentary. 

May be worth taking under advisement:

• We should resist believing we're on the right track and therefore in no need of new and different ways of thinking or acting. The truth is, our mental models, e.g., our strategies and roadmaps and visions, are laughably small relative to the enormousness of our challenges. 

• Like CP itself, the problems we face are complex. In the words of David K. Hurst, "good questions are (often) better than good answers." Wisdom begins with an admission of ignorance. 

• A lack of funding doesn't have to slow us down. Money's just one of many resources we may acquire, mobilize, leverage, etc. 

• Keep this in mind: “There are always more smart people outside your company than within it.”* The staff at SUBWAY this month is wearing t-shirts that read "Make Us Better / Take Our Survey." If the biggest corporations are looking every which way for better ideas, we should probably be doing the same.

2. FINDABLE/ LOCATABLE 

I hope to be able to use this blogspace to make our leading CP organizations more visible to leading management thinkers -- and vice versa. My little mission is to facilitate connections. Very-best-case outcomes, to my way of thinking, would involve collaborative problem solving and co-creation activities between both sides. (both "hands") To that end, I invite participation. 

So, for example, to:

• Cynthia @ Reaching for the Stars: If you want to share your views here about what you believe it'll take to build "a foundation of hope for children with cerebral palsy"; if you want to name your pains; if you want to go public with your lengthy "things to do" list -- either directly or indirectly through me -- you're more than welcome to!! 

• John Seely Brown and John Hagel @ Deloitte Center for the Edge: You wrote in The Power of Pull (2008) about "Harnessing Pull to Change the World," and specifically about mastering pull "at the individual and institutional level to achieve much broader impact in economic and social arenas." I welcome either or both of you to use this forum to teach us how to beat CP. Feel free, in other words, to stop by and solve our problems for us!!

There's also a Twitter component to this. It'll be devoted to more of the same (as above) but revolve around a particular, pick-up-the-pace goal. 

I want things to move faster. Way, way faster than we're generally envisioning now. Using a (crude?) boxing analogy, I hope to be able to look at the next year as if it were a 12-round fight -- with an intention of knocking CP on its duff by the end. As Chief Inciter, I'll report on how the fight's progressing and do whatever I can to influence things in our favor. My tweets and interactions will be directed at the level of the organization, but anyone's more than welcome to follow along @KnockOutCP.

CLOSING

`A la Ralph Waldo Emerson, David Weinberger writes in Too Big To Know (2012): 

We thus do not yet have any good idea of what cannot be done by connected humans when working at the scale of the Net. 

We truly don't know what can or can't be accomplished. 

So...

Why not get ready to rumble?

Round one's set to start on June first.

*quote attributed to Silicon Valley icon Bill Joy (co-founder of Sun Microsystems)

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