The Lives And Times Of Our Ideas

Dear Michele:
 

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

I say bravo. Thank you for:

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

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

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

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

Or maybe not. 

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

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

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

Keeler

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

Change My World In One Minute!

Idea I posted to "change the world for people with cerebral palsy" at WORLD CEREBRAL PALSY DAY: 

MY TWO CENTS_15A

Digital technologies are changing how we travel, plan, stay informed, bank, read, entertain ourselves, etc. But they don’t, in balance, seem to be significantly changing how organizations in and around the CP sphere are getting things done. I’m with Lucy Bernholz who writes in her Philanthropy and the Social Economy: Blueprint 2014:

…most of what we see are “add-ons” to old ways of doing work. We try to use e-mail or Twitter solicitations to replace or amplify our direct mail efforts (and find it doesn't yet work very well). Mobile credit card readers supplant online “donate now” buttons, and nonprofits add PayPal or Google Checkout options to their online donation options, but that’s about it.

Low-or-no-cost and proven-effective tips, techniques, and tools for being more digitally productive are readily available. (That's what this series of posts is ostensibly about.) I want the leaders of our organizations* to be aware of them, and to master them. I want them to succeed.

In the mean time, however, we parents and family members can’t afford to sit around and wait. There’s much work to be done. And though it may be daunting, there’s this good news, too: 

Doing work these days “no longer requires,” in the words of Nilofer Merchant, “a badge and permit." The tips, techniques, and tools that are there for our organizations’ taking are also available to us individuals. Opportunities and the means to make a difference are every bit as much ours as they are theirs.

What good can one person do? I’ll offer my two cents on the matter in the next set of posts.

*numbering in the hundreds? hundreds of hundreds?

My Two Cents_14

Notice that my solution for beating CP has, to this point, said nothing about advocacy, nothing about government funding, nothing about stem cells, nothing about disability rights, nothing about assistive technology, nothing about neurorehabilitation. Inarguably, that’s where a lot of the action is. Organizations working in those areas have pivotal roles to play. 

What I care about is how effectively they're pursuing their respective missions. 

My solution has largely to do with how well they get things done with and through "outsiders." In my opinion, they need to get better at working with and through individuals, e.g. the parents and family members of the millions of children in the US with neurological disorders. They also need to get better at working with and through other organizations – other nonprofits, for example. That's a topic I hope to explore later on.

How best to do these things are management matters. Making the smartest possible uses of the world’s available brainpower should be our leaders’ top priority. Their job is not to advocate, research, educate, etc., but to orchestrate talent. They need to understand that. As do their board members and other stakeholders. 

*  *  *  *  *

Actually, it's unfair to put the onus just on them. We’re all responsible. I’ll start pointing the spotlight at us parents and considering what we may be able to do to move things along in the next set of posts.

My Two Cents_13

Last day of National Cerebral Palsy Awareness month

At the start of this series, I raised the question: Can our community somehow get bigger up against its challenges? Now, here -- near the end -- I’m suggesting that it can -- -- and that one way to do it is by turning outsiders into insiders to create an ever-expanding circle of impact.

So: 

Go to it. Go right ahead, org leaders, and begin creating more meaningful opportunities for people to participate. Go beyond traditional notions of volunteerism. Transcend the tired old tactics.

How you ask?

Well, you could re-read the preceding posts to get a better sense of what some of the leading management thinkers are saying – and try some of their tips. Another option?

I've been experimenting with what I see as a possible “engine” for turning outsiders into insiders. A tool-in-the-making that subsumes, i.e., factors in, several of the big management ideas I've been writing about (users don’t have to pay those any mind; all they have to do is provide fuel) that I’d like for us, collectively, to try out.

My idea is to give outsiders more opportunities to do the real, day-to-day work of our organizations. My tool -- a simple mind map -- is for publicizing requests for help from organizations like yours. The fuel on which it runs? Everything on your “to do” and “might like to do” lists that isn’t getting done. From discrete tasks (e.g. write a fundraising appeal for a new campaign) to multi-step projects. From the simple to the complex. From the realistic to the fantastic...

Give me those to me and I’ll add them to the map. I'll invite parents and others to peruse it. Then I'll encourage them to put their talents, experience, etc. to work for your various causes.

Is said tool what I’d like it to be? Nope. It’s just a scrawny substitute. The kind of talent marketplace I have in mind would much more closely resemble a Monster.com or Careerbuilder.com. That doesn't mean, however, it can’t be valuable as it is for moving us in the right direction.

When my daughter was diagnosed over 10 years ago with cerebral palsy, I was at a loss not only about where to go for help but about what to do to help. Why couldn't we create a single place where parents can go to find out [1] where help is needed and [2] how to pitch in in ways that might move our organizations – and our larger community – forward? 

I see no reason.

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_11

Bridgespan posits that deeper connections with constituents can equate to greater organizational (nonprofit) value and impact. Makes sense to me.

I especially like the way it spells out in a 2013 article some of the more promising forms of constituent engagement and how they differ in intensity. On the weaker-shallower end of things, when an organization conducts a satisfaction survey, for example, it receives timely and useful input but doesn't generally learn much about the respondents, who don't reveal much about themselves in the process. Engage those same respondents in a focus group, by comparison, and the organization is likely to gain a deeper understanding of their aspirations, challenges, and strengths -- and the respondents themselves are likely feel more connected to the organization.

Moving to the other end of the spectrum...

Stronger-deeper forms of engagement are tied to cases where constituents are co-creating, doing high-value mission-driven work, and /or controlling organizational resources, i.e., where they're taking some ownership.

Whenever constituents (feel free to substitute inside-outsiders, or, better yet, parents and family members) respond to an organization’s engagement efforts they're essentially doing work for that organization. They're giving it something of value -- often just for the asking -- that it would otherwise have to spend resources to acquire.

Key takeaways for organization leaders? 

Constituents can help advance your missions in a number of ways, many of which you probably haven't given much thought to. And -- the other side of the coin -- there are also a number of ways to draw people in who may be both willing and able to help you carry out your mission.

My Two Cents_10

PURE INSIDERS WANTED

It's time for our nonprofits to stop seeing the millions of us inside-outsiders as walking wallets and free labor (at worst) or as passive consumers (at best). Stop. And start thinking, instead, about converting us into evangelists for your various causes.

One of the more influential books on nonprofit management of the past few years is Forces for Good. (Crutchfield and Grant, 2012) In it, the authors lay out six practices the high-performing organizations they've studied use to magnify their impact in the world. My favorite of the six suggests that -- in order to help create "an ever-expanding circle of impact" -- nonprofits should strive to turn outsiders into insiders, i.e., co-creators of organizational value. 

CO-PRODUCERS. CO-DEVELOPERS.  

What's their recipe for turning outsiders into insiders? Among other things, you have to "go beyond traditional notions of volunteerism, transcend mundane tactics, and create opportunities for people to actively participate." 

CO-WORKERS. 

When I put it that way, do you see the parallels between outsourcing work and the authors' idea of turning outsiders into co-creators? Outsourcing is an opportunity for inside-outsiders to contribute, to make a difference. It's engagement by another name.

I want to move on to Bridgespan Group's conceptions of constituent engagement, next, to help tie some of these things together.

My Two Cents_09B

I define outside-outsiders as organizations or individuals who may be willing and able to take on outsourced work from organizations in the CP arena, but who don't have any prior commitment or connection to it.

Here are three types of outside-outsiders (whose members, incidentally, will "do their thing" for either little or no pay):

• Pro bono professionals. Think legal, marketing, HR, etc. pros who donate their services to social change organizations. Example: Taproot Foundation acts as an intermediary between nonprofits and pro bono workers. 

• Freelancers. Two subcategories here: virtual assistants (organizations post tasks or projects and VAs complete them to spec; example: see MobileWorks) and gig /small service workers (workers proffer specific services that organizations buy; example: see Fiverr) 

• Students /academics. To come.

Are you utilizing this talent pool? If not, are you really maximizing the effectiveness of your organization in pursuing its mission?

*  *  *  *  *

Inside-outsiders, by contrast, are would-be workers (service providers) who have a personal stake in how well or poorly our kids fare. While they don't currently work in or for our organizations, they may be familiar with them. They're part of the neuro disorders community.

Here I'm thinking almost exclusively of parents and family members of kids with CP or other neurological disorders or conditions.

*  *  *  *   *

These two talent pools differ in significant ways. For now, I just want to touch on a few of the potential advantages to outsourcing to inside-outsiders, i.e., parents.

• For one, you get their passion. And, with it, trust-based relationships. Do these things lend themselves to creative problem solving? I'd say so. To innovation? Perhaps. 

• You also get their huge numbers. There are 14-18 million kids in the US with neurological disorders. Consider this: The average association executive probably works about 2000 hours in a year. If we could enlist a-half-of-a-percent of the parents of those kids to work just two hours per month (doing outsourced work, in service to our nonprofits) we could add over a million man-labor hours a year to help us in our fight. Who wouldn't want to try to put that to productive use? I sure would.

One other thing you get when you outsource to inside-outsiders is the increased likelihood that they will be transformed in the process...into pure insiders.

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.

My Two Cents_07

So far I've suggested that beating CP will require us to manage our asses off, and that it’d do us a world of good to pay closer attention to some of the leading management thinkers and practitioners out there. I've also suggested that nonprofit-serving consultancies could fit that bill.

It's all been very general.

More specifically, what we should look for -- I believe -- are tips, tools, and techniques that will help us magnify our impact, get more bang for our buck, and become bigger up against our challenges. A few years ago, a Stanford Social Innovation Review article posed the question "How can we achieve 100x the results with just 2x the organization?" That's what I want to know. 

My search for answers has taken me again and again to consultants and their takes on: collaboration, constituent engagement, multi-stakeholder networks, "scaling up," and shared leadership. I've become fixated on productivity. I want to see us get a lot more work done through a lot more people. (with special emphasis on parents and family members of the 14-18 million kids in the U.S. with neurological disorders or conditions)

That's the direction I want to head next.

My Two Cents_06

Consultancy Lite?

How about another source of management help, in this case an organization founded on the idea of serving nonprofits who can’t afford the costs of consultants?

Grassroots.org offers useful solutions in the form of free technology tools and business services to nonprofit organizations. One of its goals is to give away $10,000 of said tools and services "to 10,000 nonprofits every year, for a total savings to charities of $100 million per year.” Its larger mission? To help nonprofits leverage their charitable efforts and serve their communities more effectively – to serve as a catalyst for positive social change.

Grassroots offers an impressive list of tools and services, including: web hosting; volunteer web design; search engine optimization; graphic design; language translation; virtual office service; volunteer and intern recruitment; an online marketplace for helping nonprofits cultivate new donors...

Free consulting services (speaking of consulting) are also available to its member nonprofits. MBA and business undergrad students are matched with nonprofits in 3-month, project-based partnerships. Project areas include: marketing, finance, strategic planning, operations, IT, and human capital.

I don’t know Grassroots well enough to endorse it, only enough to highlight it here as something that seems worth investigating.

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.

*  *  *  *  *

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.

*  *  *  *  *

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.

My Two Cents_05A

There are so many avenues for learning what the best and brightest management thinkers may have to teach us. Let me start with consultants and what they offer.

BTW: I’m no consultant myself, nor do I play one on YouTube. However, I do keep fairly close tabs on 'em -- like a political junkie in some ways -- and believe some are doing compelling, interesting, and promising work.

What do consultants do? Generally speaking, they:

• study how individuals and organizations address key challenges and opportunities 

• look for and help bring about success stories  

• rub elbows with top managers and academics

• create frameworks, tools, and techniques for others to use (to get the favorable results they seek).

We'd be foolish not to avail ourselves of the good ones' know-how and know-what.

Ideally, I’d like to see rich, vibrant, and ongoing exchanges between the CP and consultancy worlds. We should be clamoring to build relationships and to make connections, specifically with big-time, reputable firms that specialize in nonprofit management. If we want to get better faster, we should engage the services of a Bridgespan Group, FSG, The Management Center, or TCC Group. Each has its own strengths and weaknesses. Any could swoop in and help our organizations or multi-stakeholder networks adopt "better ways of doing." 

What’s to hold us back? Well, the cost for one. 

Consultants’ services come with high price tags attached. They go where the money is. And none of us seem to have it, which may explain why we don’t seem to be on their radar and vice versa.  I haven’t done an exhaustive study, but I've never come across a consultant's case study or white paper to the contrary, and I see very few even casual associations. (The Bridgespan Group “likes” The New York Stem Cell Foundation on Facebook. There's one.) 

So, what do we do? Just throw up our hands and say, “Oh well, too rich for our blood?"

Nope.

We learn from them in other ways.

My Two Cents_04

TRUE or FALSE:

"The leaders of those organizations whose work touches in one way or another on CP are passionate about their various missions."

I'd say that's true. I gather they're working their tails off for what they believe in. 

"Those same leaders are passionate about being managers." 

I'd say that's false. It's a little hard to tell from where I sit but I don't generally see, for example: 

• references to management conferences or seminars attended, or to business books read

• management "thought leaders" being liked and followed on Facebook or Twitter 

• (what strike me as) best management practices being practiced. 

My gut tells me that stuff like maximizing resources and focusing relentlessly on results really isn't their bag. 

Some days I see this as a problem. Most other days? As "room to improve" and a big-time opportunity to get better and stronger.

*  *  *  *  *

I've come to the conclusion that it's unrealistic to expect our organizations' leaders to be both passionate about managing for results and experts (as they typically are) on particular issues or at particular functions. (e.g. marketing) Their hands and plates are full. There aren't enough hours in the day. One person, one organization, can do only so much.

Still, though, there's so much solid management thinking and experimenting going on, so much activity as it relates to nonprofits (I'm keenly interested in: collaboration, constituent engagement, multi-stakeholder networks, shared leadership) -- I want to make sure we bring the best of the best to bear. I want ours to be the best managed set of disorders and /or conditions. 

We owe it to our kids to figure out how to weave the brightest ideas into the fabric of our work. The question is, "How?"

*  *  *  *  *

Similarly for parents: You're no doubt stretched in all directions. You're doing the best you can, the best you know how. Could you do better by your son or daughter if you'd manage things differently? I say even the most "with it" among us could stand to improve, i.e., could do more as it relates to trying to produce good outcomes for our kids. 

More on this to come.

My Two Cents_03

Here’s my formula-in-the-making-in-a-nutshell for beating CP:  

We need to manage our asses off. 

I submit to you that good old-fashioned gumption has taken us far, but that there are tools and techniques from the management world we could and need to be using to really ramp up our effectiveness. 

Now, before the 95% of you who don’t think of yourselves as managers decide to exit stage right -- please hold on a sec’. I see us all as managers. We manage our households. We manage our health. We manage the commitments we make to ourselves and others...

Although my emphasis early in this series will be on organizational (e.g. nonprofit) management, I’d like for everyone, especially parents and family members of the 14-18 million kids in the US with neurological conditions or disorders, to follow along -- for this reason: 

Our organizations and their staffs are essentially our surrogates, our deputies.* Not only do they act on our behalf, the exist for and because of us. Their successes and ours are inextricably linked. 

We parents hold the real key to doing bigger and better things for our kids. Not the scientists or the other smart people “over there.” We represent their best hope. We just need to learn how to unlock the door.

*writing this as a parent myself

My Two Cents_02

How are we going to beat CP? 

My answers, such as they are, revolve 100% around us, i.e., our community, and what we're able to bring to the table. (Think "people power.") And whether we address our problems alone, in traditional teams, or in collaborative communities, success, I believe, will first and always require of us a certain attitude or approach. The word "passion" comes to mind. 

So, too, does the word "gumption" -- particularly as Robert Pirsig used it years ago in Zen and the Art of Motorcycle Maintenance:

If you're going to repair a motorcycle, an adequate supply of gumption is the first and most important tool. If you haven't got that you might as well gather up all the other tools and put them away, because they won't do you any good. 

Gumption is the psychic gasoline that keeps the whole thing going. If you haven’t got it there’s no way the motorcycle can possibly be fixed.  But if you have got it and know how to keep it there’s absolutely no way in this whole world that motorcycle can keep from getting fixed.

Our problems are more complex than fixing Kawasakis or Yamahas. We don't even know by how much. That's all the more reason, I think, for us to place a premium on having and keeping healthy mindsets.

My Two Cents_01

I like to believe that we -- each and every one of us who'd like to make a bigger dent in the challenges we associate with CP and other neurological disorders or conditions -- could be moving a heck of a lot faster and having a far greater impact than we are now. 

The crux of the matter? Our obstacles are enormous but we're relatively "tiny up against them."* 

To me, the key question is: 

Can we become, or behave as if we were, bigger up 

against our challenges? 

I believe we can. 

I actually have something of a game plan that I'd like to share by way of short posts like this one -- at least one per day until the end of (this) National Cerebral Palsy Awareness month.

I've chosen "My Two Cents" for the series title 'cause that's what my ideas-in-isolation would likely bring on the open market. But, if other interested people -- you included -- were to add their two cents to it, who knows? Maybe we could cobble together something truly valuable and find ourselves on the fast track to actually getting somewhere? 

That's my hope. 

My motives, ultimately, are selfish ones. My daughter has CP. Like many of you, I have a very real and insistent stake in what "each and every one of us" is able to accomplish.

*phrase and concept borrowed from Dan Pallotta

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!