I am pleased (and anxious and excited) to introduce a new organization called “Will People.” At the moment, Will People is nothing more than an idea in my head and a page on my blog. But it can be so much more. We can do so much more. It’s not a not-for-profit-get-a-tax-break type of organization. It’s just me. It’s me and Marty and Will and Julia. It’s us wondering… Will People help kids like Will? Will People choose to support those whose needs are so great? Will People help us help others? I hope so. Because I want to help my kid, and in the process, I want to start helping people like Will, Will People, starting in Gainesville, starting now.
Here’s the story:
Will is five and he doesn’t speak. He’s been doing well using iPod Touches and special software to communicate. But the iPods are small and not loud enough to be heard in a noisy classroom. We began looking into Speech-Generating Devices, which many children like Will use. The standard device is called a Dynavox. And it’s eight thousand dollars. For one machine. While insurance will cover this device if we jump through enough hoops (paperwork, special speech evaluations, doctor’s letters…), even with decent insurance, we have to pay at least 20 to 40%, plus our deductible. So, a few grand, even with coverage. And if it breaks or is lost or stolen? That’s our problem. They pay for one every five years. Period.
To me, this all seems incredibly wrong. I’ve seen the Dynavoxes and other devices. They’re basically 8-pound, touch-screen computers with built-in communication software. And then I thought … well, Will taught himself to use an iPod Touch and is more adept with that than any adult I know. What about the iPad? His software will work on that, it’s louder, the format is much more conducive to use as a communication device, it’s light, it’s replaceable, and Apple has great tech support. Perfect. Of course, we’d need two, as one will always have to be charging for when the other runs down or is being repaired or gets lost or left at school. So, sure, another $1500 or so, and insurance won’t cover any of that. But still, it’s cheaper than the out-of-pocket for the Dynavox, more compatible with our lifestyle: perfect.
So I started thinking of ways to come up with the money for two iPads right away. And then I realized I was thinking way too small. I know several families whose children need speech-generating devices, but the school system makes them wait nearly a year, if they’ll help at all. Insurance won’t pay or, if it will, there’s still a huge out-off-pocket expense. What about them? Why not try to help them too?
Most families like ours are already cash-strapped from paying for doctors, therapies, special foods, and lots and lots and lots of medications. Most children with autism are so sensitive that pharmaceuticals are too strong, and they need over-the-counter vitamins and supplements, but only special, specific ones, and of course those are expensive and, as usual, not covered. Kids like Will need so much therapy that if we were paying out-of-pocket for it (which, thankfully, we’re no longer doing), the cost of just his therapy would be more than our entire annual household income. And insurers don’t have to pay for more than 12 visits a year. Literally.
And so, I’ve decided to do something about that. The big organizations fund research and lobbying efforts. The local organizations offer support services. But no one, no one helps with the expenses. I’d like to try to do something about that. And I wonder, Will People want to do something about that, too?
You can help us start helping Will and kids like him today by sharing your time, ideas, skills, and resources, or by donating through Paypal! To donate, click here, or look for a link in the right-hand column and on the “links” page. Our Paypal address is email@example.com. And please, tell us what you think!
Tara and Marty Cohen
UPDATE! THE WILL PEOPLE SITE IS OFFICIALLY UP AND RUNNING! COME CHECK US OUT AT WWW.WILLPEOPLE.ORG TODAY!