My Two Cents_12

Yes, dear nonprofit leader, I’m saying that parents and /or family members of kids with neurological disorders and conditions can do more than stuff envelopes; they can do more than donate money; they can do more than read what you choose to write about yourself on Facebook. 

But you’ll have to encourage them to participate. This is what Bridgespan is advising. So, too, are the authors of Forces for Good. Your job #1 will be to create meaningful opportunities for inside-outsiders. Win-wins for both sides.

I like what social media theorist Clay Shirky brings to this table. If given the chance to address our community, I imagine he’d say: 

Even though you parents are stretched thin taking care of your kids’ immediate needs, I’m willing to bet you could volunteer or collaborate on shared projects with organizations working on their behalf. Our new digital infrastructure gives you the means to do that. Surely you could contribute  a few hours' worth of your talents, creativity and experience a month? 

To you organization leaders, you have an opportunity and a responsibility. There’s this “cognitive surplus” – this unused brainpower -- that you could and should be tapping into. The parents and family members of our 14-18 million special needs kids represent many (countless?) hours of participatory value that are up for grabs. This surplus is a resource you can and must design around if you’re to have the kind of impact we need to beat CP -- and to beat it sooner rather than later.

Here’s a link to Shirky’s 2010 TED talk about our cognitive surplus.

My Two Cents_09A

You as an organizational leader are going to want to delegate lower-value work to colleagues who can do it -- not necessarily as well as you, but -- well enough. Competently. The idea is to free yourself up to work on the largest, most pressing issues in your area of responsibility.

The goal of delegating is to maximize your effectiveness.

But our organizations are relatively small. There aren't large pools of potential delegatees. What, then, is the point? How much can "practicing safe delegating" really enhance an organization's overall impact?

Well, London School of Economics' Professor Julian Birkenshaw would have us understand that delegating is one of two ways to offload work. The other is outsourcing. (delegating to outsiders) I happen to believe that outsourcing -- or something like it -- may hold a key to amplifying our whole community's impact. I think it's well worth exploring. 

I'll lay out why in the next four or five posts. 

*  *  *  *  *

When I think of outsiders who may be able to do work on behalf of organizations in the CP sphere, two things jump to mind. One: I think of a vast landscape made up of a larger number of individuals and a smaller number of organizations. Two: If this were fifteen (15) years ago, most of the know-how and know-what associated with said landscape would have been next-to-impossible to access. Today’s communication technologies, however -- our new digital infrastructure -- make all that knowledge "there for the taking." 

The Net opens up a whole new world of possibilities for delegating to outsiders. Those of us in the neurological disorders community aren't even scratching the surface in terms of taking advantage of it. 

I see the outsider landscape as consisting of outside-outsiders and inside-outsiders. Those are only my distinctions, my constructions. But I think they're useful. And I'll characterize them in the next post.

8 Social Media Pointers For Parents Of Kids With Special Needs

They say that the Internet is making knowledge more accessible than ever and aiding us in our abilities to work together -- and that those things should be blessings. So how can we parents use it to our kids’ greatest advantage?

Here are some things that occur to me:

We can work with and through those organizations that are working on behalf of our kids. We can help them help us.* (Here I mainly have in mind our health, advocacy, research, human service, and education nonprofits.)

• Take their polls, surveys, etc. Health care is being redesigned everywhere to be more patient- and family-centered. There should be significant value in telling organizations and institutions who you are and what you think. The more demographic info you provide, the more questions you answer, the greater your participation in focus groups, the better. EXAMPLE: To promote and accelerate research, the CP Research Registry is encouraging parents to enroll their children who are diagnosed with cerebral palsy at www.cpregistry.org. 

• Use their platforms and creation spaces. Opportunities to do things like ask or answer questions in forums, comment on blog posts, and add wiki content are opportunities for you to learn and contribute while you simultaneously shape and improve their offerings. An EXAMPLE of an active community? Mommies of Miracles on Facebook, the “world’s largest virtual support group of mothers of children with exceptional needs.” 

• Exercise your citizenly rights. Many organizations make it as easy as click--click--click for parents to communicate with their elected officials on legislation or otherwise voice their opinions on policy matters. EXAMPLE: Vote 4 Autism is an advocacy campaign of The Autism Society. Its “Take Action” links let you instantly let your representatives know where you stand.

Organizations can be potent forces but they don’t by any means have a corner on good ideas, creativity, and the like. The beauty of our new digital infrastructure? It gives us opportunities to try our own formulas: for finding and attracting resources; for crafting solutions that begin and end with our own, one-of-a-kind kiddos. 

• Approach things the way an organization does. Use low- or no-cost social media to blog, tweet, or post your own original content. Accumulate followers. Raise questions. Give advice. Become a force for good in your own right. Take Michele Shusterman of CP Daily Living for EXAMPLE. Michele went from being only [sic] a mom -- to a blogger -- to a strong and consistent advocate for the CP community. 

• Form your own grassroots communities. Take things a step further and form groups around specific challenges or opportunities. Make something bigger and weightier happen by working together. An EXAMPLE of a grassroots Facebook community: Parents of Kids with Neurological Disorders. (FOOD FOR THOUGHT for Child Neurology Foundation and Children’s Neurobiological Solutions Foundation: How could you support the efforts of said community in ways that would also enhance your own organizational value?)

We'll stand a better chance of advancing our kids’ various causes if we'll take care along the way to take care of the Internet itself, i.e., cultivate its good health. Practically speaking, I’m suggesting we should:

• Help make information reusable and easy to find. How? Simply by doing things like tagging (labeling) and linking your work. 

• Document the good stuff. Summarize what you discover, what you hope, what you fear, etc. and put it out there in formats that can be readily consumed and passed around. Add to the collective. 

• Make it a good environment for knowledge. Your job as a parent is to do the necessary work of caring for your child and her or his various communities. As it relates to working online, I say: Don’t intentionally mislead. Don’t make personal attacks. Don’t be close-minded to new ideas. Do first check your facts. Do do well by your son or daughter.

*  *  *  *  * 

Has this been helpful? What am I leaving out? Please let me know.

BONUS POINTER: For some other ways you can help your nonprofits help you, here’s a collection of big and small “calls to action” -- specific requests for help -- some of our special needs organizations have been making over the past couple of months: www.mindmeister.com/362961613/_. Take a look!

*Another way of putting it, hearkening back to 1961: Ask not what our nonprofits can do for you, ask what you can do for our nonprofits!

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 EIGHT: I Commend You

I don't know these days if people are still handing out kudos, or even props for that matter, but I want to -- to RespectAbilityUSA.

How come?

Based on first impressions only of its Facebook activities, I see an organization using social media for more than just fundraising or marketing communications. I see it using social media strategically, too, for doing important, mission-driven work.

In the past 4-6 weeks, for example, RA has issued at least 4-6 unique calls to action. (I know in at least two cases its calls were answered.) It has invited constituents to: 

• participate in a conference call 

• complete a survey 

• submit photos 

• provide pro bono camerawork, and 

• be interviewed. 

Could this mean it actually gets what it means to "be digital" and why things necessarily start and end with the constituent? 

In any case, RespectAbility's Facebook page strikes me as a good environment for knowledge; a good environment for learning. There's a working community in the making there. And since at this point I can only imagine giving its leaders a "smartie" award for productive Net behavior -- I wish 'em well. 

I hope other nonprofits working in and around the CP and special needs realm take note.

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 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.

*  *  *  *  *

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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A Tale of Two Hope Machines, 9.3.1

UCP has developed a comprehensive, one-stop shop of resources for every U.S. state and territory. Never scour the Web again for bits and pieces of disability information and resources from disparate sources!

That second sentence jumps out at me – it prompts me – every time I see it. Invariably it causes me to think of knowledge stocks and knowledge flows, and the central roles the two play in the meditations of John Seely Brown, et. al. 

One of that bunch's biggest ideas goes like this: 

It used to be that organizations could win by: (1) knowing valuable stuff, and (2) extracting value from -- while simultaneously restricting access to -- what they knew. Nowadays, however, that approach isn’t cutting it. Why not? Mostly because “in a world changing at an increasingly rapid pace, the half-life of these stocks of knowledge is depleting at an equally rapid pace.”

The new way to make it as an organization is to shift the primary focus to flows of new knowledge. 

“It’s no longer about what you know,” they say, “but rather, what relationships you have and what you can learn from these relationships.” 

UCP was founded in 1949, when the older ways had just begun to hold sway. Obviously, the organization has evolved over the years. (Witness its ongoing efforts to keep up with changes in information technologies.) Are its mindsets and practices, however, all the way up to today’s speed? That’s the sort of thing I want to delve into in this sub-section. 

Additionally, I’d like to know: 

• In what ways is UCP organized around the notion that value comes from protecting and capitalizing on existing stocks of knowledge? 

• How and where is it participating in flows of new knowledge? 

• How might it stand to gain by implementing JSB’s ideas? 

• Is there a systematic way to go about doing that?

You may have noticed that I haven’t been mentioning Red Treehouse. Reason being? At some point herein I want to zero in specifically on UCP’s Public Education & Outreach (PE&O) offerings. In my opinion, those are similar enough to (all of) Red Treehouse’s offerings that, if anything useful comes of the zeroing in, both organizations will be served.

*what we know at any particular time

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