Posts tagged as:

autism

Project: I Vote Autism

October 29, 2009 · 0 comments

In this earlier post on single-issue voting, I described the genesis of my new political strategy/philosophy. So what? My goal is to create a framework for very specific, detailed information about politicians and voting records at all levels of government: federal, state, and local. We need to track not just voting on new laws but also funding decisions and program support and *efficacy* down to the school board level. Here’s an example, from a different context, of the level of detail I’d like to see.

With detailed information from a variety of sources on the actions taken, not the words spoken or empathy expressed, we parents, grandparents, aunts, uncles, cousins, friends, and especially self-advocates can become vastly better informed about how to cast our votes. Americans have spread out across the states and towns of our nation throughout the last 50 years; few of us live with our whole families in towns where we can influence political processes to the same extent as those who recognize more clearly defined common interests. But our children our everywhere, and there’s no reason my parents in upstate NY shouldn’t be voting to support ASD issues there just like my friends in California or Massachusetts. The problems of those children ARE my son’s problems. This entire class of children and adults, and perhaps an entire burgeoning ASD generation, needs our protection, assistance, and support so we can build in them the power to speak for themselves.

“…to secure these rights, Governments are instituted among men….”

From a technical perspective, I imagine this project as being built in layers as tools rather than documents. What this means is that it starts with a straightforward national layer, since there are a number of good sources to get information about Congress and votes/actions on bills/amendments. It’s also relatively easy to look at something like Autism Votes for a list of important bills to track. Similar tools could be built at the state and then county/local levels to track both legislators and legislation. Then, the system could be expanded to track the executive branch and even judges. A user should be able to designate an organization that maintains a list of the public policy issues that group is tracking (like Autism Votes does here).

So what makes this different than Autism Votes? First off, I see this as a very direct, reductionist verdict, a thumbs-up/thumbs-down on every person tracked. Remember, the premise is that ASD issues are more important to most people in our community than just about anything else. I don’t know at which point this idea crosses over into lobbying and the political influence categories that trigger different regulatory requirements, but it’s not a problem at this nascent stage.

The key to this project is the combination of some straightforward web 2.0 tools with a definite crowdsourced component (only locals will put school board names on a list after each election) and the ability to share judgments OPENLY, so people can advocate for their own views. For example, I would imagine that the science-heavy crowd among parents would diverge greatly from the “warrior mom” contingent on how they would rate people who support/oppose particular vaccine research funding. There’s nothing wrong with that, of course. Politics is how we deal with allocations of scarce resources in a democracy. It might as well work!

(As an aside, if this project were built with an open and extensible design plan, such as using references to open-source/public wiki-style definitions files, it could be expanded into a grass-roots political action tool for people with any particular concern.)

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When discussing the recent presidential campaign with two professors I know, one asked me who was more “favorable” when it came to autism. He assumed that I would probably support the Democrats because of their association with support of civil rights (IDEA and the ADA are civil rights statutes at their heart).

As I continued to consider that query and followed the debates and politicians’ jockeying around support of various autism legislation, I developed an idea for a political information website that recognized the primacy of autism in my life and the lives of so many families and extended families like ours. Do I vote Democrat? Do I vote Republican? No, “I vote Autism.”

I guess I’ve become a single-issue voter. And, at least for now, I see it as critical when confronting the actions and policies of other interest groups: doctors, teachers, auto union workers, post office employees, and frankly anyone else. It’s not any less legitimate for me, and every autism Dad and Mom, to speak for our children in the same voice as everyone else speaks for themselves.

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Reconciling insurance laws with the free market

17 August 2009

This editorial at the WSJ talks about some commonly advanced alternatives to  current health-care/health-insurance reform legislation. As a law student, I took a whole class on insurance law; I practiced insurance defense law (in mass torts, not individual personal injury cases); and I’ve studied the economic principles relating to insurance law (in fact, I keep [...]

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Autism Awareness Day on CBS

10 April 2009

Dylan was on CBS’s The Early Show last Thursday. Some additions: when he was in a home program, the total cost was $2k a week; now it’s $2k a month on top of what he gets at school. Dylan attends REED Academy, a private nonprofit school focused on providing a science-based intervention for children on [...]

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Logo contest on crowdSPRING

10 April 2009

We’re running a logo contest on crowdSPRING for a social network-based site serving the ASD (autistic spectrum disorder) community. Besides wanting to see a greater variety of designs from different people rather than a number of variations on a theme from one person, I wanted to see how the original “thoughtstorm.com” might have functioned. My [...]

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NYC Area — Parent on NYC Nonstop @ 7PM EST

2 April 2009

NYC Area — Our friend and fellow REED parent Shelly Milstein will be on the Nightly News with Chuck Scarborough on NYC Nonstop tonight, LIVE at 7 PM Eastern. Oh, and Suzanne Wright of Autism Speaks will be there too. (Ok, I’m biased.)  Here’s the place to find the right channel for your cable system.

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How to train your boss

28 January 2009

I recently wrote a 30Seats post on the parallels between applied behavior analysis techniques commonly used in treating autistic children and “handling” a boss who can be difficult. Today, Seth Godin writes a more colorful post addressing one of the key points — not reacting to bad behavior at all — in the context of [...]

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