My Two Cents_05B

I have to credit United Cerebral Palsy (UCP) for always fueling my fire. I literally get upset every time I visit its site.

I thought it would be helpful all the way 'round to start this section by recommending its Mission Driven Business consulting services, which the national office offers its affiliates and other nonprofits (outside the network) in areas such as finance, strategy, and leadership. Two would-be advantages of engaging MDB vs. one of the previously mentioned consultancies? I'd expect a higher level of understanding of what it's like to operate within the CP sphere. And -- at a lower cost. Probably much lower.

In true UCP fashion, however, online references to this offering haven’t been updated in years. Crawl the web the way I just did and you’ll get...

Crickets. 

Pathetic.

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Doing more with less and working smarter -- not than, but -- with the next guy will be dominant themes of this series. As I've written before, "Our CP community may very well be under-funded, under-appreciated, and under-other-things. But those of us in it don't have to be under-ambitious, under-clever, or under-hard-working." There are other, less-expensive ways to take advantage of the leading consultancies' stocks-in-trade. 

For examples, they write books and white papers. They host webinars. And I still like -- for tips and tools you can put into practice right away -- newsletters. (digital) I say you can't go too far wrong subscribing to these four (4) today: The Bridgespan Group's Knowledge Letter, TCC Group's E-News, FSG's eNewsletter, and The Management Fix by The Management Center.

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Who are you gonna call, on the other hand, if you want to become a more effective special needs parent? Probably not the wise guys and gals I've been referencing. You could, however, get up to speed with David Allen and his Getting Things Done (GTD) methodology. Mr. Allen is a management consultant and coach, and, since the publication of his first book in 2001, a "personal productivity guru". I'll have a lot more to say later about the personal productivity of the millions of us. For now, you may want to explore his company's various offerings @ gtd.com.

ROUND NINE: Not Nominated (Oddly Enough) For An Oscar

ROUND SEVEN: It's About The Work

What do I read into UCP's innocent-enough-looking "Digital Communications & Marketing" internship listing? To me, it's one way the organization has chosen to communicate to the world that it could use a little help. 

What kinds of help? The kinds humans in marketing departments typically give. They: write; read; organize; search the Net; stay on top o' things; post stuff on Facebook. UCP assigns those fancier names. But I'd venture to guess that thousands of parents of disabled kids -- if not tens or hundreds of thousands -- would find the work rudimentary, if not elementary. I'd also guess that UCP has more of it than it could rightly imagine. 

Hypothetically: 

What if you're a parent with aptitudes in these areas who'd like to help, but who couldn't fill the position as circumscribed? What if you were to learn today that the position's already been filled? Case closed in your mind? 

I say if you believe in UCP's mission (it's trying to open doors for people with disabilities) -- don't let those things stop you: 

• UCP's looking for help in D.C. but you live in North Dakota? This is research and communications work. I'm sure a percentage of it, maybe even a large percentage, could be done from a distance. 

• The internship is "not for pay" but you need to be compensated? UCP has previously offered small stipends for transportation. Maybe it would pay you small sums for services rendered? 

• You're not a polished or published writer? You don't have an English degree? So what. Maybe rough but well organized drafts would be acceptable.

We're all learning how to unlock the benefits of the Net and what It could conceivably do for knowledge. Nobody has a corner on good approaches to orchestrating work. I believe we parents and the organizations working on our behalf owe it to our kids to explore all avenues. Like the ones above.

ROUND THREE: What CP Parents Are For (Part C)

The next questions for leaders of CP-facing orgs become: How can you capture the passionate participation of CP parents? How do go about making better use of their know-how and know-what to get much needed knowledge work done? I'll suggest a general answer or two herein. In Part D, I'll get specific.

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The Net. The Net. The Net. 
Need I say more?

When I say "the Net," what I really mean is our whole digital infrastructure. And I tend to make a simplistic distinction: 

On the one hand, I think of technologies and related practices that have to do with accessing and attracting resources. They're what most people probably think of when they think of social media. I more or less associate them with online communication and selling or fundraising. As for their roles in finding expertise and getting things done? They enable organizations to "selectively" tap into the world's intelligence, i.e., to find in the masses exactly the (small number of) knowledge or other resources they need.

To really drive performance rapidly to new levels, however, it's argued by the likes of too-many-management-consultants-to-try-to-name that organizations need to provide people with tools, resources, and incentives to mass collaborate. (Instead of social media think social production.) Here it's the use of "collective" intelligence -- the pooling of many small and incremental community contributions into useful bodies of knowledge -- they're touting.

Our own CP nonprofits provide us with examples of the latter. Two that jump right to mind: (1.) Michele Shusterman's / CP Daily Living's use of a Change.org petition platform in attempt to get United Cerebral Palsy (UCP) to change its name* and (2) Reaching For The Stars' use of blogging, e-mailing, and online contact forms -- in combination -- to enlist parents and physicians in successfully securing language in the 2013 Appropriations budget for specific Cerebral Palsy research funding. My "A Tale of Two Hope Machines" series also covers some of UCP's successful forays.

More about tapping into selective (Part D.1) and collective (Parts D.2 and D.3) intelligence to come.

I'd say we're just scratching the surface as it relates to taking advantage of the hidden talent out there. And I don't think it'd be unfair to there's way more social media than there is social production. The latter is difficult. Choosing projects that are worth pursuing, having well-formed purposes, clearly articulating the benefits to community members to contributing, etc. -- these are tricky propositions. 

If our orgs passionately want to improve and get better, though, they'll want to explore and master all of the above. 

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ROUND THREE: What CP Parents Are For (Part B)

Maybe you've already associated this post's title with Wendell Berry's "What Are People For?" 

I got around to reading his (old?) 1990 essay about a month ago. It'd been on my radar for years and, well, Mr. Berry didn't disappoint. But he also didn't exactly answer his own question like I had hoped and having read the piece hasn't made answering mine -- "What are CP parents for?" -- any easier. 

No biggie, I suppose. I've read enough of his other writings to know that a major part of his answer would revolve around...

WORK. 

More specifically: I know he believes that people are for doing "the inescapably necessary work" of caring for their communities. They're (we're) for doing the kind of work that requires, among other things, a deep appreciation of context and much giving of intelligence, affection, and skill. 

Not coincidentally, I believe that good work -- think TLC, and lots of it -- is just what our CP community needs. 

What kinds of work? 

Brain work. Knowledge work. In 57 varieties.

I'm talking about specialized work that requires the specific expertise of people who probably already think of themselves as knowledge workers, and also about generalized work; work that could be performed by most people, many of whom probably wouldn't consider themselves knowledge workers. I think of regular old parents, for example, whose greatest hidden value may lie in the things we learn in the daily context of raising kids with CP.

Two things we CP parents have going for us are that (1) there are lots and lots of us, and (2) we have what matters most: passion, the desire to help -- in many cases without expectation of extrinsic rewards. 

Surely those aren't being used to their fullest. 

If we CP parents are for doing good work, it follows that leaders of CP-facing organizations have an opportunity -- maybe even an obligation -- to put us to work. According to many leading thinkers, that's management's JOB ONE anyhow. It's no longer, they say, about being the big brain of the organization and cascading your brilliance down and out to less-informed, less-wise others. That no longer flies.

What does fly has a lot more to do with capturing the participation of passionate people. (Here I'm talking broadly about tapping into the expertise, creativity, energy that lies outside of your organization, but the same idea applies to the people within it.) This is part of the new formula for success, the new way to solve new problems as well as find new solutions to old problems. It's a way to make your organization more indispensable and to amplify its impact.

There could be other more subtle benefits to putting CP parents to work, as well.

When you give people opportunities to chip in, you empower them. You give them chances to develop their talents. You increase the likelihood that good ideas will emerge. You build and inspire a sense of community. You bestow dignity. (Wendell Berry: "Our greatest dignity is in employment.") At a time in which many CP parents are financially tapped out and unable to contribute cash to the cause, and where opportunities to make a difference via the political process are limited, those sorts of things may mean even more. 

SO: 

To the leaders of CP-related organizations of all stripes, in all sectors, the opportunity to tap into what CP parents have to offer is yours. If you choose to ignore it, I wish you the best. I would also hope -- and I would bet -- that others will eventually see and seize it. 

As NiloferMerchant, the Jane Bond of Innovation, observed: "Doing work these days no longer requires a badge and permit. Anyone -- without preapproval or vetting or criteria -- will create and contribute." CP parents will take matters in their own hands with or without you. More and more of us are realizing that it's not just the smart people over there who can bring about progress. Reaching for theStars and Children's Neurobiolgical Solutions didn't to my knowledge ask United Cerebral Palsy (UCP) for permission before starting their own organizations. They saw unmet needs and just did it. 

That's the wave of the present. It's what the Mercers, the Deloittes, the McKinseys, the Gartners, and others in the management consultancy world have been preaching for some time. Their messages are readily available for consideration.

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: 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.

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.

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

Round one of "the fight to end all fights vs. CP" as I've framed it began on June 1st. If it goes the distance, i.e., if neither side gets its block knocked off, it'll end on May 31st, 2014. We're now twenty-one (21) days in. That's over three-fifths (3/5) of the first round. And five (5) percent of a whole year.

Time is whizzing by.

Coming from the business side of things, as I do -- where performance and numbers and measurable results are everything -- naturally I'm going to be keeping an eye on the calendar. It's my job...

Isn't it? 

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Last fall I spent some time looking into the big ideas upon which UCP (United Cerebral Palsy) is founded. When it came to dissecting the org's vision statement, I was mildly surprised that I was unable to find references to specific stretch goals or time horizons. Don't get me wrong -- "Life Without Limits" is a wonderful aspiration. Please sign us up. We'll take two. But it's not by itself very conducive to being carried out, i.e., executed.

My "KO CP" is of the same ilk. 

Going forward with it, however, my inclination will be to: 

• label it (is that my mission or my vision?) 

• think of it in project or change management terms 

• translate strategic choices into operational programs, and 

• shoot for specific targets along the way. 

I'm hip to several tools, methodologies, and best practice frameworks that are available to help me do those things; I'm just now starting to think about which ones to use.

In the meantime, a still very general way of expressing what I hope to accomplish is: I want to make the CP landscape look brighter than it otherwise would if I'd choose to sit on my hands and do nothing the next eleven-plus months. 

This begs all sorts of questions -- not only of me, but also of the leaders of our "CP industry" organizations. For example, if it's my intention to help them take their games up a notch and do more, I need to have a sense of what they're already on track to accomplish. (How else could I gauge my impact?) I wonder: Are they focused enough on outcomes themselves to have realistic views of how things might look come next June?*

I'm not sure. I'd like to suggest, though, that a more methodical, results-driven approach might help in that regard -- and in others. (Here I'm thinking of all orgs involved in fighting CP, but especially of our nonprofit advocacy, support, and research organizations.) There's compelling evidence to back me up. I'd like to inch closer to some of it...

Next.

*Sure would be interesting to know their forecasts and how they intend to judge whether or not it's been a successful year.

ROUND ONE: It's About Time. And Space.

As far as goals go, "Knock Out CP" is a whopper. It's also about as vague as can be. But you have to start somewhere, and, recalling (as I hardly ever do) the Austrian economist and philosopher Ludwig Von Mises, at least it's ACTIONABLE in that it meets these conditions for human action. There's:

1. a sense of dissatisfaction with the way things are; 
2. an image of a better, more suitable set of conditions; 
3. the expectation that purposeful action will make a difference.

Human Action: A Treatise on Economics was published in 1949. Coincidentally, that's the same year United Cerebral Palsy (UCP) was born as a national organization -- from humble beginnings; thanks to the efforts of families dissatisfied with their lack of options and wanting to dramatically improve the quality of life for children with CP. Today there are many more and many different types of organizations, worldwide, driven by similar missions. 

They'd all like to see CP go down for the count.

Generally speaking, each is in one way or another pursuing CHANGE for the better. Implicit are the notions that (a) work has to be done to produce change, and (b) work takes time. Time is a dimension of all change.

My own particular time-sense tells that progress is being made on the CP front, but at a SNAIL'S PACE. I feel impatient. So much so that I can't wait for the Big Summer CP Conference or the next Global Get-Together. (both nonspecified) It'll take light years for the President's BRAIN initiative to get funded and bear fruit. 

I want change to happen faster, i.e., in a much shorter amount of time.

Of course, my perceptions are colored by what I want for my daughter. I want her to thrive. I want her to exult. I want her to feel better. I want her to laugh more. I want her to be able to more fully participate...

PRONTO.

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Expressing the changes we want to see on a personal, human scale makes them more understandable; it's where the focus properly belongs. Along those lines, I believe it's our responsibility as parents to keep our perspectives, needs, and senses of urgency front and center. The goal should be to "pull" helpful goods and services to our kids, and that's the way to start. 

We need to get the various provider organizations out there moving in tune with us.

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I'm inspired: by the enterprise and energy, by the research findings, by the roadmaps and visions. But I've also been around the block some. 

Take the inspiring visions: 

One problem with them is that they're COARSE-GRAINED. In other words, they "identify some factors of interest but ignore many details in the process." (David K. Hurst) Even relatively simpler, standalone projects typically take longer than plans anticipate (doesn't this ring true in your experience?) due to unforeseen issues on the ground, and --

Our CP-related projects-to-come aren't likely to be simple. They won't even be complicated, in the ways, say, construction or IT projects often are. They'll continue to be complex. They'll entail lots of uncertainty. Stem cell research looks promising, for example, but it may be many years before we know whether or not transplantation is even safe.*

SO WHAT? 

We're probably way underestimating the amount of ground we need to cover, i.e., the distance or space we still need to traverse. (Space is another dimension of all change.) That means we should be doing a heck of a lot more work now. There's a Planetary Powwow scheduled for 2014? We need to move it up. Can we acclerate the planning phase? Can we get crackin' in advance on the work that's likely to follow? Can we make the need to meet...moot?

These are management matters. 

I personally want to see CP knocked for a loop within one (1) calendar year. Attaching that timeframe to it is my attempt to influence, i.e., manage, things in that direction. (Whether or not it's a smart attempt remains to be seen.) It's also SPECIFIC. 

Conjecturing, on the other hand, that there's "lots and lots of work to be done" is UN-SPECIFIC. What work? How much? What are the resource requirements? Our answers to questions like these will determine the kinds of results we get.

Can leading management thinkers help in all of this? 

I hope so.

*To say nothing of what Wendell Berry wrote -- something I always keep in mind: “We live in a world famous for its ability both to surprise us and to deceive us.”