ROUND THREE: What CP Parents Are For (Part D.1)

I'd like to see us make our collective way to a time and place where and when CP is flat on its back receiving the ol' ten count from a million of us referees: One. Two. Three...

To get there, though, we'll no doubt have to do a voluminous amount of knowledge work. We'll have to develop innovative ideas, come up with new answers to old problems, make difficult choices from among imperfect options, engineer products or services, and more.

So let's get busy.

I mentioned in Part C that the Net makes it possible to selectively find in the masses the exact knowledge or expertise one needs. Our orgs are already doing this. I want to see 'em really ramp things up, though, and that's the subject of this post. I won't go into the challenge of accessing and attracting full-time help for full-time pay. That seems not to be much of an issue for those that can afford it. Instead, the focus here will be on low- or no-cost online solutions to acquiring expertise. 

Let's start with using social technologies for finding volunteers. 

Several of our nonprofits say somewhere on their sites that they're looking for volunteers. They typically have a "Get Involved" page that typically expresses a need for fundraising or event-specific help. Rarely, however, do they go further. Let's Cure CP posits a short list of "professional skill sets that can benefit our foundation." (including database development, legal or tax consultation, medical and counseling expertise, and copywriting) But it doesn't go into detail. It doesn't specify what any of the projects on its "to do" list are. And it does little to motivate potential volunteers ("What's in it for me?") to act. I'm not sure why. Nor am I sure why no one seems to be aggressively using social techs like Twitter and Facebook to do those same things.

Note to self: Why couldn't businesses seek volunteer help, too? Isn't it conceivable that a CP parent who wants to help out would be quite willing to share his or her skills with a CP-connected business -- let's say for example Advanced Muscle Stimulators, in Rochester, NY -- that has social as well as private aims?

PRO BONO may also be a powerful alternative for nonprofits, for completing projects of almost any kind and scope.

"Every year, for-profit business professionals donate over $15 billion in pro bono services" for nonprofit marketing, fundraising, HR, IT, board development, legal and strategic planning support. That's according to Taproot Foundation, a nonprofit that makes business talent available to organizations working to improve society. It's a resource nonprofits in the CP arena need to tap if they want to realize their full potential. I encourage ours to visit the site for tips and tricks related to getting pro bono support.

We've got to be smarter. Rather than do more with less, we've got to do more with more.

One particular (relatively small) communications project has been on my mind.

In May of this year, Cynthia at Reaching For The Stars informed me that she was working on "an article highlighting the most promising research areas and what that will mean for people with CP." We're almost in September and to the best of my knowledge it still remains to be written. 

To produce a piece like the one I suppose she has in mind can take a lot of time and thought. No doubt she wants it to be thorough, accurate, inspiring, etc. I also know she's swamped with other work. So the fact that it's still on the back burner is perfectly understandable, forgivable, excusable -- all those things. 

But what a darn shame. 

Her article-to-be goes right to the heart of what RFTS is trying to do. It's mission critical. And the would-be contents, in my opinion, are vitally important. This thing could have been in circulation for three (3) whole months by now getting: passed around...dissected...re-presented...and acted upon. Those THREE MONTHS LOST matter to my daughter.

Someone else could write the piece.

If pro bono copy writing isn't available through Taproot, well, then what about Fiverr.com? "Fiverr, stylized as fiverr, is a global online marketplace offering tasks and services, referred to as 'gigs' and micro-jobs beginning at a cost of $5.00 U.S. per job performed." (per Wikipedia) At Fiverr, there's no shortage of writers making offers like this one: "I will write an article up to 450 words about any topic for $5." It's all legit. It employs a reputation system like eBay's. It's worth a try.

An assignment like Cynthia's could even conceivably be broken down into smaller bits, i.e., into its component parts, and worked on by several people (parents). Or, as an alternative, we could use social technologies in entirely different ways to get her messages across. 

More on options along these lines in the next post.

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. Avenues like the ones above are ours for the exploring. We owe it to our kids to check 'em out. 

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.