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.

A Tale of Two Hope Machines, 9.3.3

KNOWLEDGE FLOWS: Interactions that (1.) create knowledge or transfer it across individuals; (2.) occur in social, fluid environments that allow firms and individuals to get better faster by working with others

So, if I read a white paper and its author's "brainstuffs" are thus mingled with mine -- am I participating in a flow of new knowledge? Does the fact that I can get back to him or her via e-mail make that a social and fluid environment?

I'm not in love with JSB & Co.'s definition because it doesn't really help me understand why knowledge flows are becoming so all-important. ( Organizations must "accelerate a shift to a very different mindset and to practices that treat knowledge flows as the central opportunity.") And, don't most of us already participate in knowledge flows? Isn't that what people do? I'm sure everyone at UCP-National, for example, is learning on the job...

What's the big deal?

Before I try and answer, I want to take a stab at identifying how and where UCP may presently be participating in flows of new knowledge.

First, two particular "social, fluid environments" o' theirs beg my attention: 

• In its role as a news provider, PE&O is right where the action is -- processing information; moving it from the newsmakers to the rest of us -- on a daily basis. (Think SmartBrief.)

• Online communities like the one found at www.mychildwithoutlimits.org are HELPING MEMBERS HELP OTHER MEMBERS by enabling knowledge transfers that support, inspire, etc.

Surely UCP is participating in knowledge flows in these cases, no?

Well, on closer inspection...

No. I'd say that knowledge is flowing but that UCP isn't really participating -- at least in the sense of trying to better itself in the process. It's acting in both cases as a middleman, facilitating the transfer of knowledge. The actual contents (of the news and online-community-exchanges) may just as well be widgets. 

Where else could we look for evidence of UCP's participation in knowledge flows? Maybe this is a cop-out, but, the fact of the matter is that it's hard to get a glimpse of them from the outside. Knowledge flows are by definition dynamic and fluid. They're happening at the edge; they've yet to be made explicit. That said --

How about Twitter, Facebook, or the like as places to look?

COME TO THINK OF IT THERE WAS A LIFE LABS BLOG POST having to do with its practice of browsing for events to attend outside of the assistive technology arena. (in search of "different perspectives on solutions for people with disabilities") This may have been a clue that Life Labs is routinely participating in knowledge flows. 

And for actual evidence that it is?

Life Labs recently announced that it's formed a partnership with the AbleGamers Foundation to co-create mobile accessible gaming stations. (link to announcement) This may someday prove to be an example of how it pays to participate in knowledge flows. From its site: "Life Labs already has a major UCP affiliate interested in several of these mobile gaming stations and is excited to be able to offer the station to the general public once a prototype is completed."

*  *  *  *  *

There's still lots of fuzziness surrounding these notions of stocks and flows. I think it might be helpful, next, to reopen JSB's PLAYBOOK for PERFORMANCE IMPROVEMENT IN A POST BIG-SHIFT WORLD  (a.k.a. THE POWER OF PULL) and see exactly how they figure in.

A Tale of Two Hope Machines, 8.4.B

My understanding is that the My Child Without Limits forum is actually managed by Inspire, an outfit that builds online health and wellness communities and offers them free to advocacy organizations like UCP. It’s responsible for moderation, technical support, back-end communications, and other day-to-day obligations.

‘Z’at mean that UCP doesn’t know its collaborative stuff?

Nope. It means that UCP chose to outsource in this case. The only thing that counts, anyhow, is the value people do or don't derive. The forum at My Child seems active. Participants seem to like it...

What I can't tell by browsing is if and how UCP benefits. Or if its managers have the know-how and know-what to pull off something like it on their own. And, can they use social media to collaborate communally for other purposes? The foundation for becoming a social organization is in place. But what about the other stuff that sits on top?

To attempt an answer, we still have two wholly home-grown community collaboration efforts we can look at: Life Labs and (one I left out of the discussion in part A) Brave Kids.

*  *  *  *  *

Like My Child, Brave Kids is an issue-specific campaign with its own site: www.bravekids.org. Brave Kids' mission is to serve “children and youth with disabilities and chronic /life-threatening illnesses by providing a support community, information and resources on numerous medical conditions like genetic diseases, autism, cancer, cerebral palsy, ADD, etc.” 

One of the primary goals at Brave Kids is to help kids build connections with other kids based on their similar experiences. Looking to its online community for signs, however -- that hoped-for connection building isn't happening. Participation is anemic. (the flip-side o' what you see at My Child) To date there have been “3 Posts in 2 Topics by 2 Members,” the most recent coming over six months ago.

I could make more or less the same observation with regard to the participation levels at Life Labs. (re: its Google Group and wiki, for examples)

SOCIAL MEDIA, PURPOSE, and COMMUNITY are the three indispensables of community collaboration. I don't see participants in these cases being mobilized to contribute. I don't see collaboration being generated on a meaningful scale, i.e., there's no tapping into the full knowledge, talent, innovation, and energy of large groups of people. The COMMUNITY component is MIA.

One might argue that both sites, both communities, are still relatively young -- to which Gartner would counter: “Social media environments do not grow slowly over time.” 

The harsh reality is that most social media initiatives either fail to attract interest or deliver real value to the organization. Participation doesn’t usually just happen. Keep in mind a key Gartner insight: Community collaboration isn’t primarily a technology implementation. It’s a management challenge. “Let us be clear: if IT alone leads the effort," the authors of The Social Organization say, "you have already stepped off the path to success. Business leadership is crucial." 

Life Labs’ Director is UCP’s IT Director…

*  *  *  *  *

If it is the case that both would-be communities are struggling, what would Gartner do? How would it go about trying to help? Methodically -- it'd start with a complete medical history, so to speak. Performed on macroscopic and microscopic levels:

MACROSCOPIC 

At the level of the WHOLE ORGANIZATION, Gartner would want to look at all the visioning and strategizing activities that lead to okaying the two projects in the first place. It would help UCP assess whether or not community collaboration was an appropriate choice, and help establish (on closer inspection) that both projects were worth pursuing. This'd entail: 

• Making sure the purposes were well formed, and that they clearly articulated the benefits to community members and the value to the organization;

• Doing "grow" assessments to systematically determine if and how the community collaboration efforts should have moved forward;

• Looking at the projects as parts of a coherent portfolio of purposeful communities -- and making decisions about them accordingly.

MICROSCOPIC

At the INDIVIDUAL COMMUNITY level, Gartner would want to focus on all the following steps required to cultivate -- prepare and launch -- a successful community: 

Prepare. A green light (indicating "Yes, we think we're going to want to invest in Life Labs and /or Brave Kids") at the macroscopic level still requires more focused and vigorous efforts to decide if and how to proceed. For each proposed purpose and community, those efforts should have resulted in:

• a purpose roadmap; a malleable plan for its evolution (how the community can evolve to deliver sustained value over time);

• a more formal business justification, one that describes the concrete sources of expected value.

"This combination provides solid footing to progress to the launch phase, where a desired community becomes a reality.”

Launch. A successful launch entails: 

• Exploring and defining the participant experience;

• Creating the right environment (addressing structure, ease of use, choosing the right social media technologies, and more);

• Engaging the community, i.e., grabbing and holding participants’ attention (setting critical mass targets and rapidly driving participation).

*  *  *  *  *

Gartner's overriding objective would be to help UCP build the capabilities to achieve meaningful, repeatable, and significant organizational value with social media technologies -- 

To help UCP hoist itself, in other words, securely onto the FORGING rung.

A Tale of Two Hope Machines, 8.4.A

An organization that makes it to the FORGING rung (step five of six on Gartner’s analogical ladder) is in rarefied air. UCP shows signs of being close. As I hinted at earlier, though, I doubt that it’s actually there – in no small part because the deck's been stacked against it from the start. 

What do I mean?

Becoming a social organization isn’t easy. The authors of The Social Organization warn us of that in the Intro, and then re-warn readers in Chapter 3 that putting mass collaboration to work requires “a high degree of corporate skill that most companies will struggle to develop for many years to come.” It only stands to reason that UCP is probably struggling, too. 

Those same authors also researched community collaboration adoption across many fields. When it came time to rank the more active adopters, nonprofits didn’t make the cut. “The highest adoption tier comprises retail, government, media, IT, and consumer products.” Except maybe for the elite of the elite, I wouldn’t expect health nonprofits to be up to the same speed (as organizations in those other industries).*

Still...

In significant ways UCP looks to be bucking any low-to-moderate expectations and becoming a social organization:

• It has a history of having experimented with online communities over the years. (to which I’ve alluded before) 

• UCP has professed its belief in the strategic importance of community collaboration. From its most recent annual report: “UCP recognizes the power of social media to amplify the voices of people with disabilities and all who care about their civil rights struggle. UCP invests heavily in updating and refocusing its social media presence during fiscal years 2010 and 2011.” This tells me the requisite mindset is in place, i.e., the people pulling the strings there don’t think entirely in terms of hierarchy and traditional management. 

• As a parent of a child with CP, I’m thankful that there are multiple ways for me to communicate and collaborate – not only with UCP’s staff, but with its whole network of friends, beneficiaries, partners, and so on. UCP has advanced past the “broadcasting at people” to the “engaging with people” stage. 

To the last point, you could say UCP now manages its own portfolio of platforms. (something social organizations do) Some of them are limited-time-only. Others are ongoing. Next thing I want to do is arrange the ones I know about accordingly.

A ONE-SHOT DEAL?

In conjunction with World CP Day, UCP is one of several global sponsors of the Change my world in 1 minute initiative. How it works: “Throughout August and September [2012], people with cerebral palsy were given the opportunity to express what they needed to make their lives more independent or rewarding. Those ideas were posted…and participants were asked to vote for the ideas they liked the best.” Now in its second phase, this is a great example of a collaborative community charged with performing a variety of disparate tasks, including generating innovative ideas and locating experts (crowd sourcing) in a large community.  

CONTINUOUS

• “Why build your own social community if you can achieve your purpose on someone else’s?” UCP has joined some existing general social web communities (Facebook, Twitter, and YouTube) and maintains multiple accounts.** 

• The My Child Without Limits Support Community connects families, friends and caregivers for support and inspiration. It’s a powerful platform that enables people to connect and collaborate with others in a variety of ways, most notably via a discussion forum. Rather than build this community from scratch, UCP opted to join an existing specific social web community. More about this in part B.

• Life Labs is a home-grown UCP social community. (It’s “only” five clicks away from UCP's homepage if you know what you’re looking for! That’ll be my only jab. I personally think all of these communities are a little hard to get to.) One of the key objectives of the Life Without Limits initiative as it’s currently construed is to help improve the lives “of people with disabilities by harnessing the latest innovations in technology to increase their access to the wider world and marketplace.” Life Labs is dedicated to developing technology-based solutions for people with disabilities and partnering with others who are similarly interested in accessible and inclusive technology. Among other things, its site employs social technologies out the wazoo. There’s: a blog; an option to join Life Labs on Google Groups; a Twitter account; a wiki…

My Child and Life Labs are collaborative communities. It's through these, in particular, that UCP demonstrates that the foundation is there, the basics are in place, for becoming a social organization. 

The platforms show me that UCP knows [1.] what collaborative communities are, [2.] what the defining characteristics are, and [3.] how organizations are using mass collaboration to achieve bigger, faster and better results: 

1. Remember the three indispensable components for mass collaboration?  Life Labs has what I think is a compelling PURPOSE. There’s a very active COMMUNITY at My Child. Both sites use SOCIAL MEDIA extensively. UCP obviously does.
2. Both communities are run in accordance with Gartner's “fundamental principles or defining characteristics of mass collaboration.” Without going into detail, the six (6) principles are : participation, collective, transparency, independence, persistence, and emergence.
3. In both instances UCP's using social media in support of “collective intelligence”: the pooling of small and incremental contributions into a coherent and useful body of knowledge. (Via Life Labs, for example, people are generating innovative ideas, solving difficult challenges, and engineering products. At My Child, people are posting content, augmenting it, categorizing it, and so on.) This is a proven -- legit', if you will -- way of using mass collaboration advantageously. 

To repeat: the foundation is there. 

Now...

How far can UCP go? How are the communities built on that foundation actually doing? How much real value are they delivering? And, how well is UCP doing all the other things it needs to do to build collaboration competence up and down the organization? Well enough to garner a great Gartner grade?

My best guess in part B.

*especially in the absence of fierce and direct competition
**It has at least three different Facebook accounts, for example.

A Tale of Two Hope Machines, 5.1

While we’re talking about site structures, an observation about navigating the two of ‘em:

It looks to me like they’re doing a better job at www.redtreehouse.org of taking visitors by the hand and walking them from start to finish, i.e., of being specific about how to use the tool that is their web site to get results. 

At www.redtreehouse.org you can find resources, organizations, and events in one of two ways. 

Could things possibly be any more straightforward?

At www.ucp.org on the other hand…things don't seem so clear cut. Unless of course you’re lucky enough to have landed on one of the issue-specific sites (e.g., www.mychildwithoutlimits.org) first.

More about UCP’s issue-specific sites – and all this jazz – down the road. 

It’s nice when it comes to equipment, tools, and machines to have clear operating instructions. That goes for hope machines, too.

A Tale of Two Hope Machines, 5.0

More than just bits and bytes, this digital infrastructure consists of the institutions, practices, and protocols that together organize and deliver the increasing power of digital technology to business and society.*

Ultimately, I want to evaluate how well these two orgs. are utilizing the world's digital infrastructure to deliver on their high-level promises – beginning with a basic accounting (below) of what I call their “digital deliverables”: those offerings o' theirs that I as a user or visitor can access with my laptop.

Two notes: I don’t have a particular framework for doing this accounting. No cool tools, in other words, to bring to the party. Nor do I have any insider knowledge whatsoever.  

Red Treehouse 

Short and sweet: There’s the web site. There’s a separate Facebook page (that, for some unknown reason, isn't linked to or from the main site). I‘m tempted to add press releases to the mix, but will hold off. All I really want to do now is say a couple of words about the first.

The web site brings together “three sources for information and support”. It’s structured so that users can search for and find the following: 

1. RESOURCES, guides and tool-kits.
2. Names, contacts and helpful information about community ORGANIZATIONS.
3. Calendar of EVENTS, trainings and activities happening locally.
   

Ohio families, young adults, professionals, and organizations make up the user universe. Those who register receive monthly heads-ups regarding new content that’s been added to the site. 

UCP

UCP's web site is bigger and more sprawled out than Red Treehouse’s. I’m just starting to get a grip on the structure and logic behind it. 

One of the largest health non-profits in the country, UCP differs from Red Treehouse in that it operates a large affiliate network and also advocates for public policies “that ensure fair and full citizenship for people with a spectrum of disabilities.” A sizable chunk of the real estate at www.ucp.org is dedicated to those two functions. What's left of it (the real estate, that is) is tied mainly to UCP's Public Education & Outreach (PEO) efforts. It's those efforts that lead me to want to compare the two organizations in the first place.

PEO combines two primary components. First, there’s Public Education Resources. UCP’s online offerings in this category remind me very much of Red Treehouse’s offerings in their entirety. Included therein are in-depth online Resources, and State Resource Guides: contact information for state and local disability related services and organizations. “Never scour the Web again for bits and pieces of disability information and resources from disparate sources!”

Public Education Campaigns is the second PEO component. Subsumed under this heading are four (4) issue-specific campaigns, each of which has, or will have, its own web site. The four are: My Child Without Limits, Brave Kids, My Life Without Limits (to come), and Siblings Initiative (to come, as well).

About PEO online, I'll just say generally that newer digital tools are richly in evidence. Here you'll find blogs, tools for helping people with reading disabilities, online communities, live stream webcasts, and more. Social media use looks to be lively, especially as it relates to the issue-specific campaigns. 

UCP has been experimenting with trying to harness the power of the Net for some time. Much of the experimenting has stemmed from the Life Without Limits initiative begun in ’04. Peruse the site's pages and you still see references to older LWL campaigns (Don't Block My Vote and Who Will Care?), social media experiments, a crowd-sourced immersive scenario game (Ruby’s Bequest)...

Aggressive, if not progressive, use of digital technologies has been and still seems to be a UCP preference. I hope to dig deeper into it going forward.

*from The Power of Pull  (2010) by John Seely Brown, John Hagel III, and Lang Davison