The Lives And Times Of Our Ideas

Dear Michele:
 

About your September 09 blog post where you make the case that we should classify cerebral palsy as one of a handful of conditions that may result from an Early Developmental Brain Injury (EDBI)...

I say bravo. Thank you for:

1. bringing the issue to light*;
2. challenging your readers in longer-than-140-characters form to use their noodles;
3. questioning the status quo and continuing to push to make things better.

I think you've hit on an important issue. And I'll be on the lookout for what happens next. Will AACPDM pick up on it? Will your proposal make its way to a decision? If so, will we be able to look back years from now on said decision and judge it to have been effective? That last would be no small accomplishment.

Effective decisions necessarily take into account the effort involved [Is the time, trouble, expense, etc. involved in making it greater than what the decision merits?], the timing [Can it be made in an acceptable time frame?], the yield [Will the decision be faithfully and adequately executed?] -- not to mention quality considerations. [A high-quality decision is based on relevant facts, assesses risks as accurately as possible, and rigorously debates alternatives.]

I'm not sure our community is equipped to tackle all that. At minimum I believe we'd have to develop new capabilities and means, including ways to involve parents (think "patient engagement," "patient-centeredness") like the ones who've been commenting on your post. Before we dive in and decide -- haphazardly -- things should be thought through.

Or maybe not. 

You stressed the importance of information pipelines. I understand where you're coming from, but I also don't believe that knowledge really flows in pipelines like we've always supposed. Knowledge is more a property of (messy) networks.

A nice upshot of that is that you don't necessarily have to wait for somebody else's seal of approval on this matter. If your framework helps you organize and guide your thoughts and actions as they relate to caring for your daughter -- go ahead and use it. Write more about it. Tell others how it works. Be selective in your use of the term "cerebral palsy." Trust that others in your network will follow suit, i.e., that your framework will catch on organically. I'll try to be more careful myself.

EDBI Daily Living is a heck of a lot clunkier than your current title, but maybe you should consider it or something like it?

Keeler

*I'd be hard-pressed to say how or when the term "cerebral palsy" has helped my daughter in her lifetime -- which began, coincidentally, on September 09. [2001]

ROUND EIGHT: Everything's Peachy

Here's what I take away from 99% of the online communications I see from organizations operating in and around the cerebral palsy / neurological disorders / brain research / special needs arena: 

Everything's peachy.

You had a great 2013. 
You're right on track for 2014. 
You know just what you're doing. (You're "collaborating.") 
Sure you could use a ton of money -- for what, you rarely say -- but outside o' that?

Peachy.

If I'm reading you correctly that means:

• Your operations are going like gangbusters and need no improving. Your processes are smooth and efficient. As for your programs, products, and services? They're all grand slam home runs.

• The dozens of projects to which you've committed are being broken down into smaller task-chunks and getting checked off -- on time, in every department, to great effect. (That you selected the right projects based on the right strategies in the first place goes without saying.) 

• You're adequately addressing all the "look into" things you and your staff have been hoping and meaning to explore or pursue but haven't had the time to. 

If that's what you're telling me, I'm sorry but --  

I don't buy it for a minute. 

For a variety of reasons. Not the least of which is the fact that so few organizations are as well oiled or productive as they could be. 

I believe you could use all kinds of help. 

Curiously enough, though, your communications never say so explicitly. You show no signs you're in the market for any of the kinds of help I alluded to above. You never say you don't know. You never acknowledge you need more expertise or resources. You never discuss things that flop.

You never let 'em see you sweat. 

That's par for the management and organizational-communications course historically. Remember earlier web sites? 100% PR-filtered and one-way. ("This is what we decided to say about ourselves after we had a chance to deliberate.") I'm not surprised that many of your sites still are. But the fact that I'm seeing the same sorts of patterns with regard to your blogs and Facebook pages concerns me.

How come?

Well, I tend to go along with an observation Dan Pallotta made in his much circulated TED speech from March of 2013, that "Our problems are massive in scale [and] our organizations are tiny up against them."  

Our problems are massive. 

Current conventional CP therapies offer only a 4-10% average gain for any particular individual.* One in eighty-eight children is being diagnosed with autism. We can't afford for our organizations, individually and /or collectively, to be tiny up against our challenges. Not everything's peachy.

What's social media got to do with it? 

I wouldn't go so far as to say that our social media approaches and practices are keeping us tiny. I would say, however, that they're not doing much to make us bigger up against our challenges. And I believe they could.  

And must.

What makes social media special is its two-way-ness. The ability to use it to "engage with" (as opposed to "broadcast to") others. Especially w/ lots of others. A general formula that seems to be emerging for using social media to advance one's mission? Help others help you. Improve your performance by helping smart and passionate others improve their own performance.

Practically speaking, the idea is to (1.) put your true organizational self out there, (2.) tell the world what, specifically, is important to your future success, and (3.) invite people to apply their talents, creativity, and skills to it. How to do these things, e.g., what inducements to offer would-be participants, depends on you and your context. 

My response /call to action:

I'm experimenting with something that could conceivably help your organization "open itself up" to additional help from the outside. Via my Parents2Projects Facebook page and "Calls 2 Action" map (below) I'm trying to get the word out to potential workers / helpers / service providers that there's much important work to be done in our community. 

You may be able to help your organization by telling me what help you want or need. Tell me about projects, would-be projects, or specific tasks you could use some help completing. From the profound to the mundane. Of any size or scope. Shoot 'em my way and I'll see what I can do to connect you with low- or no-cost "people power" to get them done. Please contact me here, or through Facebook.

What's there to lose? Who's to say we couldn't drum up a critical mass of participants and amplify our productivity and impact beyond our wildest dreams?

Create your own mind maps at MindMeister 

*per Dr. Iona Novak from CP Alliance in Australia

ROUND SEVEN: Imagined Interview About Parents To Projects (P2P)

We sat down a few weeks ago for a Skype conversation with Keeler Cox. Keeler is the father of a twelve-year-old daughter who has cerebral palsy. For the past couple of years, he's been drawing on his business background to raise questions about the possibility of "managing CP out of existence."

Our focus? Parents to Projects (P2P): an experiment aimed at helping the broader children's neurological disorders community pick up the pace and be more productive. 

*  *  *  *  *

Interviewer: Tell us about the origins of P2P.

KC: Well, there are lots of organizations -- a surprising number -- working directly or indirectly on behalf of kids like mine, trying to make things better. I'm grateful for all they do. Unfortunately, though, they have long, long, long ways to go to even come close to fulfilling their missions. I want things to move faster. P2P is a product of that. Specifically, it represents an effort to get our organizations more help.

Interviewer: How did you zero in on "work" as your subject matter?

KC: I'm sure it has to do with my believing that, even if funding in our neck of the woods stays where it is, we still ought to be able to manage our existing productive -- i.e. work -- resources better.

Interviewer: And accomplish more as a result?

KC: Yes. 

Interviewer: What would that do for us? How would that help our community?

KC: My hope (and my hypothesis) is that we'd all benefit. Individual organizations would move closer to fulfilling their missions. And there'd be multiplier effects. We probably couldn't reach our goals twice as fast by doubling our collective work output. But if our orgs could attempt more things -- a lot more things -- at least we'd learn what doesn't work faster. That'd be valuable.

Interviewer: What kind of work are you talking about?

KC: All the stuff organizations commit to doing in their efforts to achieve their goals. From the biggest projects to the smallest tasks. From the experimental to the mundane. Businesses have historically been better at specifying what that stuff is. Nonprofits, government agencies, individuals and multi-stakeholder networks, on the other hand, have generally been poorer. 

Interviewer: In other words...

KC: They're not managers first. Deploying people and other resources to tackle what's on their "to do" lists isn't their forte.

Interviewer: Why don't they look for help?

KC: I could only speculate. What really matters, though, is that a lot of potentially valuable work isn't getting done; stuff's falling through the cracks. That's not only unfortunate -- selfishly, it doesn't help my daughter -- it may also be unnecessary.

Interviewer: Why unnecessary?

KC: Because I believe the resources our organizations need are out there waiting to be mobilized.

Interviewer: How does your P2P concept tie in?

KC: One thing I'd like to try via P2P to do is help organization leaders become better HR managers, in a sense: more aware of the human resources available to them; better at attracting and accessing people who can help them work through their challenges. There's a sizable talent pool out there that I believe could be better tapped.

Interviewer: Where? Who?

KC: For starters, there are 14 million children in the US battling some type of neurological challenge. Their families. Their parents. No doubt many are tapped out financially and otherwise. But imagine if even a portion of them could muster up the energy to contribute an hour a week to helping our orgs advance their various causes, either voluntarily or for cheap. What would our ecosystem look like a year from now?

Interviewer: And P2P would address that how? 

KC: Generally speaking, by using the power of the Net to match organizations' work needs with parents and other service providers, by cultivating a kind of talent marketplace. Not unlike an industry-specific Monster.com in some ways.

Interviewer: Sounds like a good place to stop.

*  *  *  *  *

We encourage organization leaders and parents alike to check out Keeler's Facebook page to get involved: www.facebook.com/parents2projects.

ROUND ONE: Could You Please Be More Specific? (Part B)

The confluence of financially-driven managerial criteria, combined with the progressive era’s lasting focus on measurable impact, has led to a growing instrumental orientation for the nonprofit sector.

I've been drawn to recent work done by Stanford PACS (Center on Philanthropy and Civil Society) focusing on language use in the nonprofit sector. Researchers there have determined, among other things, that managerial and scientific discourse has heavily influenced nonprofits and that an "interlanguage" (made up of 24 familiar words) has emerged that "spans the boundaries between the domains of civil society, scientific-research, and management." Said interlanguage is being used by all contributors and appears to be playing a role in connecting the three communities. It's also an indication, they say, that nonprofits are thinking more about managing for results.

This is part of a bigger project undertaken by Woody Powell and his team on metrics and evaluation in the nonprofit sector. (something I came across while thinking about orienting our CP orgs more in the managing-for-outcomes direction) Their goals are "to understand who is responsible for producing or creating different evaluation frameworks and metrics, who is responsible for proselytizing or carrying them to different places, and who is adopting or consuming them." I'll try to keep an eye out for and report on any potentially useful info that comes of it. 

The language an organization uses on its public web site -- subject matter of the above study -- reflects its intentional portrayal of itself. Such portrayals have been my only real windows into the thinking going on inside (what I think of as) the "CP industry." My "A Tale of Two Hope Machines" series of posts is based entirely on UCP's self-representations at www.ucp.org.* 

I haven't gone so far as to do a rigorous, PACS-style search for "evaluative" language at our other CP nonprofits' sites to get a sense of how important performance -- and measuring it -- are. I'm sure, though, I'd find some interlanguage in use. As for references more specifically to numbers, targets, performance goals, etc., here's what I see at a glance: 

• Some statistics, some facts and figures. As a result of visiting Let's Cure CP for the first time, for example, I just learned that: 1 in 3 children with CP cannot walk; 1 in 4 cannot feed themselves; 1 in 4 cannot dress themselves. And "The average medical lifetime cost for a person with CP is over one million dollars."

• Other signs of outcome-focused thinking. Reaching for the Stars lists some its specific achievements on its overview page. Example: "Through federal advocacy efforts, secured Congressional appropriations language committing to line item federal funding of Cerebral Palsy research in the 2013 budget."

We do seem to be becoming more results driven. But it's still not generally a strong point of emphasis; it's not a dominant trait. I'm of the impression that there's room for growth. Or, at least, that there may be opportunities for us to improve -- faster -- by experimenting with what in the business world are often called strategy execution or "performance management" approaches.

More "meat" with regard to using those to achieve breakthrough results in Part C.

*I've written specifically about UCP's language use on multiple occasions. In this post, for example, I zero in on its use of the word "hope": A Tale of Two Hope Machines, 3.0.

A Tale of Two Hope Machines, 9.3.5.A

Back to this JSB-JH3 approach, the one that hinges on the pursuit of edge opportunities: Should UCP have a closer look?

"Yes," if it:

• is interested in getting better faster 

• is turned on by the prospect of capturing "market opportunities that are appearing more rapidly than ever and that present large upside potential." (Note: Disruptive technologies -- social media, cloud computing, mobility, big data analytics, etc. -- figure prominently in the authors' formula but said opportunities aren't for technocentric industries alone; they're open to organizations of all kinds.) 

• has challenges to overcome. 

To the last point, this new approach is 's-much-as-anything an antidote to poor performance. It's for counteracting the effects of "The Big Shift," which is tied to globalization and rapid advancements in technology, and which has "dramatically intensified competitive pressures on firms over decades." More specifically, it's for organizations whose tried and true solutions ain't cuttin' it. It's for organizations whose core processes are in need of transformation.

Is UCP feeling performance pressures?

I don't have a lot to go by. My impression, however, is that UCP *is* being exposed to performance pressures. From UCP-National we have the President and CEO telling us the economics of providing services for disabled children are "difficult." At the affiliate level, I know (this is my lone example) that UCP of Central Ohio merged a few years ago with Goodwill Columbus  in order to lower operating costs -- which it had to do because it was unable "to raise the money it needed to thrive." 

These may be signs that performance improvement is imperative and not just something that'd be nice to achieve. I keep hearing about steady declines in government support. Are these actual, or threatened? At which levels of government? As for the effects of globalization and technology advances, I wonder: is UCP is seeing second order effects like service life-cycle compression and /or donors becoming more fickle in their giving patterns?

Obviously, I need to continue to learn about the nature of UCP's challenges. In the meantime, though, I'll proceed from the glass-half-full perspective that says new opportunities are springing up faster than ever. In my opinion, UCP should be open to any evidence that may exist to the effect that it could do better by making changes. It should be open to new opportunities and to looking, if need be, in new places for them.

Like edges. 

More about those, next.

Getting Smarter Faster

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.*

Sure would be nice to be able to broadcast to the world “Here’s a description of my precious little girl. She wants to live a life without limits.** We’re looking for knowledge and related resources we can use.” -- and to have what she needs come streamin’ in: automatically, continuously, and right on target.

What kinds of knowledge and resources? Well, answers to all the questions I have in mind to ask; ideas and information that hadn't previously occurred to me to look for; opportunities to collaborate with others to create new knowledge...

I want my daughter to be an epicenter for these heady things. 

I’ve read enough books filled with enough accounts of effective, real-world "pulling" to believe she could be. Here's a wee bit about three (3) such books worth noting as they relate to our discussion:

• Pull: The Power of the Semantic Web to Transform Your Business [2009] by David Siegel. The so-called semantic web is “a new way of packaging information to make it much more useful and reusable.” It represents a vision (at this point) of what the Net could become, i.e., an extremely powerful tool for getting what we need when we need it.

• Too Big To Know [2011] by David Weinberger. Everything you ever wanted to know about knowledge in our new networked world. Among many other things pull-related, Mr. Weinberger writes thoughtfully about strategies for filtering knowledge (forward) in order to successfully keep on keepin’ on. 

• The Power of Pull [2010] by John Hagel, John Seely Brown and Lang Davison. About ways individuals, teams and other groups are using pull techniques to their advantage. I’m most interested in what they have to say about "shaping strategies," which have to do with motivating big groups of people and institutions to work together to solve problems.

The notion that we can use the Net to perform better -- i.e., be more efficient, learn faster, and have greater impact -- runs through each book. Hagel, Brown and Davison, in particular, talk in terms of “increasing the rate at which we can improve performance.”

How might "performance" enter in when we're talking about CP? In countless ways, I'm sure, but what matters most is how well our kids are performing.

I wonder: 

• Can we use the Net to help more kids with CP achieve more than anyone's ever dreamed possible?

• How quickly can we get to the point where we’re laughing at the very things that are limiting our kids today? 

• Could it be that what holds our kids back the most are our limited capacities as adults to learn and imagine better ways of doing things?

*from Too Big To Know
** "For people with a spectrum of disabilities, life should be without limits" comes from United Cerebral Palsy (UCP).