ROUND TWO: Classified Info (Part C)

That UCP's "Life Without Limits" vision applies to people with a whole spectrum of disabilities has me wondering. Including multi-stakeholder networks, I've identified, for classification purposes, five (5) CP-fighting sectors. Wouldn't it be nice to be able to locate the orgs and indivs within them along various spectrums / spectra or continuums / continua -- so that they'd be closer to or farther from "focused on CP," closer to or farther from "operates in the health arena," closer to or farther from "provides direct care," and so on?

That's just one thing I'd like to be able to do. More generally, I'd like to be able to quickly and easily manipulate my data. (aka the folks I'm following on Twitter and what I know about them) How come? To see what the landscape would look like if it were rearranged in various ways. To look for patterns. To gain insights about relationships, etc. 

Enter mind mapping. 

A mind map is a graphical way of expressing what's in your head; a means of displaying the connections your mind makes. (From the play Who's Afraid of Virginia Woolf, I always remember George, one of the two main characters, jokingly referring to an abstract painting as "a pictorial representation of the order of [his wife] Martha's mind.") By definition, a mind map is a visual thinking tool that helps you structure information and better analyze, comprehend, synthesize, recall and generate new ideas. 

I'm in the process now of transferring my Twitter "Following"s into an online mind mapping program so I can structure them as I see fit. I'm using my five-sector framework as a basis for grouping. I've also started to add Web site links to some, thinking that this could be useful / powerful down the road.

MindMeister.com is the service provider. As it says on its site, "It's very hard for two people to write notes on the same piece of paper, but it's easy for them to share a digital mind map. Mind maps are open and friendly and invite input from everyone. If you're working on a complex project with a large team of co-workers, you can create a mind map, share it with them and encourage everyone to annotate it."

The real potential lies in this idea of using maps collaboratively. Like I said before, my map is crude at this point; only a hazy beginning. The new formula for getting better faster, however, is to put things like it out in public and to invite others to use, make comments, etc. Mine isn't public in the sense that others can add notes or make changes, but those capabilites are there. 

If you'd like to take a closer look at the actual map, here's a direct link:  http://www.mindmeister.com/311249601/who-can-help-us-ko-cp.

ROUND TWO: Classified Info (Part B)

With regard to grouping my Twitter "Following"s, I'm coming across organizations that I -- no matter how hard I try -- can't fit neatly into any one of my four main sector-categories. Furthermore, their names all seem to end in words like "alliance" ..."consortium" ..."federation" ...and "council".

Networks are what those organizations are. And when I examine their components I see that they're generally made up of civil society + private + individual + government sector stakeholders. 

So what?

Well, influential author, advisor and strategist Don Tapscott suggests that self-organizing networks will be key in helping us to solve our growing global problems: climate change, conflict, poverty, water scarcity, infectious disease,  economic stagnation -- maybe even CP. 

Mr. Tapscott is leading a study about how these new patterns of connection can fulfill their potential in fixing a broken world. In the course of learning what makes big networks tick, he's determined that they come in nine (9) flavors and that every network represents primarily one of the nine.

Participants in knowledge networks, for example, are in the business of creating knowledge. TED and Wikipedia are two widely known examples. And we have at least one good example of a knowledge network in the CP sphere: 

NeuroDevNet is dedicated to helping children overcome neurodevelopmental disorders. Its mission is to "ensure generated knowledge is translated into tangible diagnostic, preventative, therapeutic, social, economic, and health benefits for all." It does so by working with "partners in academia, the community, not-for-profit sector, industry, and government, and across traditional disciplinary boundaries and sectors."

Going back to my previous post, I guess you could say that visualizing networks -- existing or potential -- is another use for my classification scheme. This graphic below shows some of the NeuroDevNet's general* stakeholder /member types: 

More to come along these lines in Part C.

*Reaching For The Stars (RFTS) is the only specific member I know of to date.

ROUND TWO: Classified Info (Part A)

"In this corner --

institutions and organizations committed to fighting the Cerebral Palsy fight and improving outcomes as they relate to CP." 

Hmmm. Seems understandable enough, doesn't it? On further review, however, what /who are those institutions and organizations? How would one decide which ones to include or exclude? For clarity's sake -- my own and anybody else's who may be keeping score at home -- I want to try to spell out more generally who I see as being on our side. Who the good guys are, in other words, in the CP fight. 

I've come up with a crude classification scheme. 

Here's some background. 

The goods-producing component of our society has traditionally been thought to consist of three (3) sectors. There's the public /government sector, the private /for-profit business sector, and the civil society /nonprofit sector. Others who think about such things also add a fourth sector -- variously called individuals, households, or "non-organizational forms." 

For purposes here, I intend to think in terms of those four (4) sectors, and, as would-be CP fighters come into my sphere of consideration I'll slot them -- like this:

Public /government ("public initiatives for public good")  Example: AHRQ, the US Department of Health and Human Services Agency for Healthcare Research and Quality  

Private /business ("private initiatives for private good") Example: TheraTogs, in Telluride, CO, makes "customizable physical rehabilitation systems that are worn under clothing to address neuromotor, orthopedic, and postural conditions", i.e., orthoses 

Individuals ("all other non-organizational forms") Example: Jilda Vargus-Adams, a pediatric physiatrist at Cincinnati Children's Hospital 

Civil society /nonprofits ("private initiatives for public good") See next.

Nonprofits represent the majority of my target audience (and Twitter "Following"s)* so far. Probably because I've paid them more attention, I've gotten a little carried away with my analytical knife and carved out these five (5) subsets:

Health. Example: American Association of People with Disabilities (AAPD), America's largest disability rights organization 

Philanthropy. Example: The Annie E. Casey Foundation "develops solutions to build a brighter future for children, families, and communities" 

Research. Example: CanChild Centre for Childhood Disability Research, a research center in Ontario, Canada that focuses on improving the lives of children and youth w/ disabilities and their families 

Education. Example: The Center for Social Innovation at the Stanford Graduate School of Business "educates leaders who can solve the world's toughest problems" 

Human Services. Example: Hattie Larlham Center for Children with Disabilities, an Intermediate Care Facility (ICF/MR) in Ohio that provides residential care to children and young adults

Classifying's always tricky. The further you try to go and the more subdivisions you try to create (to achieve clarity, presumably) the murkier things become. In this case, deciding to which of the four sectors an entity belongs can be tough enough. When you try to make even thinner cuts...well, let me give you an example. I'm pretty sure it's "proper" to classify direct-service agencies as Human Service nonprofits, but -- do independent therapy clinics belong in the same class? How about -- help! -- inclusive recreation groups?

The good news is that nothing here is set in stone; the whole thing's refinable. Also a tool like this only has to be useful. At this point, the categories above make sense to me. Already they've helped me see new patterns. (They've made me realize, for example, that I'm only following on Twitter a few durable CP-related goods providers.) And I'm starting to see other potential uses.

I'm curious to know: Do you classify other organizations for any reason(s)? Do you, or would you, do things differently? Is this useful to you? Does it trigger any interesting thoughts?

*  *  *  *  *

*Trying to process Tweets from those I'm following is too much for my brain on its own to handle. They say making lists based on key words or tags (to compartmentalize) can help. So, I'm in the process of incorporating the scheme above at /on Twitter, too. What's your strategy for keeping up with what others are posting?

ROUND TWO: Could You Please Be More Specific? (Part D)

While hundreds of thousands of social service organizations work incredibly hard to help structurally disadvantaged and socially marginalized individuals, families, and groups build better lives and life prospects for themselves and their children, few do so effectively—and indeed lack the organizational competencies and capacity to do so. This is a bitter truth. And though it is a collective failure—not only of these organizations, but also of their funders and consultants—it is also a correctable one.

*  *  *  *  *

What a declaration, eh? To say in no uncertain terms that most social service organizations are inept?

That's David Hunter essentially calling out nonprofit leaders -- including, I take him to mean, the ones in charge of our leading CP orgs. Known for holding nothing back, Dr. Hunter is known as well, if not better, for helping organizations make "the kinds of fundamental decisions and clarifications that, if implemented, will allow them to perform reliably, effectively, sustainably, efficiently, and at a high level of quality." 

The now-retired consultant exhorts nonprofits to use a comprehensive approach  to "manage to outcomes." (Interestingly, his approach and The Bridgespan Group's both center around what's known as a theory of change -- an organization's blueprint for success, or statement of how it intends to get results.) His  Working Hard & Working Well lays out said approach in its entirety and serves as a guide to help leaders: 

• clarify what they’re trying to achieve; 
• develop the capacity to know whether they’re on track to get there and the drive to keep improving over time.

The book is downloadable for free in multiple electronic formats via: http://www.vppartners.org/leapofreason/get-working-hard-and-working-well.

ROUND TWO: What CP Parents Are For (Part A)

In the course of trying to get to know some our CP advocacy/ education/ fundraising orgs over the past several months, I've been making mental notes about their conceptions of the role of parents. What do they think CP parents are for, I've wondered? Their answers, I believe, could hold keys to how swiftly or slowly we all move in the direction of blasting CP.

My curiosity was piqued last fall when I revisited United Cerebral Palsy (UCP) for the first time in years. I had come back -- I should disclose from the get-go -- with low expectations. My preconceived notion was that there wasn't much for us there. To my surprise, though, I came across all kinds of good stuff, some of which set me off in interesting new directions. It struck me as an improved UCP. For the most part.

A few things still bugged me: 

• I found the site hard to navigate. I remember wondering: Is there a section tailored to parents and what they'd want to know? What kind of maze must one walk through to get there? To this day, I don't get why there's not a straightforward connection from UCP's home page to My Child Without Limits.

• I saw signs of both a "push" mentality and an outmoded view of expertise. UCP came off as if it authoritatively knew what was important and had -- once and for all -- rounded up the answers and passed them on to us (uninitiated and passive) consumers. 

• Please refer to your local affiliate. Headquarters seemed to go out of its way to avoid having to interact with parents. I personally found customer service `a la UCP to be anything but warm and fuzzy. 

An overarching impression was that UCP-National didn't need anything from me or my daughter. Which I found offensive. Why wouldn't our experience matter? Why didn't they see my daughter in her particularity, or care particularly about her? It made no sense to me on any level. ('specially after having come from the business world, where a P&G, for example, goes to great lengths to understand its customers and prospects in context, or where Japanese companies have always have done the same) I concluded at the time that UCP viewed me -- to the extent that it saw me at all -- as nothing more than a donor or voter to be. 

That was close to a year ago. Now I see things differently. My views are more nuanced. I appreciate more of what UCP's doing and where it's coming from. 

But I have started seeing other organizations. Namely: Children's Neurobiological Solutions Foundation. Let's Cure CP. Reaching for the Stars. CP Daily Living. I hesitate to lump the four together. Also, I'm reluctant to generalize about the nature of their work, what they believe, and -- to the main point of this post -- how they view CP parents. I will venture to say, though, that the narrative they're each in the midst of creating and telling seems to be one and the same. 

It goes more or less like this: 

Signs are pointing to the possibilities that CP may someday be preventable, treatable, and even curable. It'll all ride on the quantity and quality of work we can collectively pull out of certain smart folks working in certain scientific and medical fields. Those folks, however, aren't being adequately funded. In response -- in the words of Michele at CP Daily Living -- "the US cerebral palsy community is working hard to organize and improve financial support..." 

Where do we CP parents fit into that equation? What are the options for helping implied? 

It follows that we can: get educated about what's happening...spread the word...donate and/ or raise monies...become politically involved.

Unlike UCP, these other four organizations are headed up by parents of kids with CP.  And surely they differ from UCP in other ways  -- in their respective means and ends, their degrees of focus on CP, their relative emphases on research, etc. If push came to shove, I'd guess that they'd claim to be more specifically in touch with CP parents' needs and wants than UCP, and that they're the truer champions of parents' interests. Reaching for the Stars (RFTS) goes so far as to describe itself as "the only global, parent-led, pediatric nonprofit Cerebral Palsy foundation."

Nevertheless, I'd say the majority of their "asks" of parents still revolve around raising funds for research. The conceptions they have of the role of parents in our fight aren't substantively very different than UCP's.

Where am I going with this?

I'm not saying it'd hurt to have a lot more loot ($) coming into the CP sphere. No doubt that could help a great deal. Lest ours become a "we're handcuffed without it" ($) movement, however, I'd like to suggest that there are other things our advocacy/ education/ fundraising orgs could be doing in parallel. Those other things have to do with taking an even more expansive view of what we smart parents have to offer and then smartly putting us to work. Our large numbers + our gumption + today's social technologies give us unprecedented opportunities to get things done -- at relatively low costs -- and we all should be taking fuller advantage.

More along these lines to follow.