Christopher and Dana Reeve Paralysis Act

[betheny]

Now that we have the data about numbers of SCI and paralyzed, those should easily combine with the stats about the cost of those conditions. When the variables are plugged in, the financial costs will be clear, and they will be staggering.

We all know the health benefits of PT, for example. We know that every pressure sore costs us X amount of time, money and health.

Now we need to persuade the powers that be that investing in our health, at both "Care" (for example, FES bikes to increase muscle mass and reduce pressure sores) and Cure (researching curative therapies) levels, is a good financial investment. Investing in GOOD rehab for the newly SCI-How much must that save the government in the long run? Teaching somebody to maximize every last bit of function is so cost-effective, compared to teaching them "You can't cook, tend your kids, do your job or drive. You can't prevent your own pressure sores with diligence and good nutrition, nor UTI's with clean technique and lots of water. You are at the mercy of your injured body, so we'll just pay you a pittance to very slowly and painfully die." (Believe it or not, that is the message in many bad rehabs around this country.) Not to mention the incalculable cost of wasted potential...

So getting this knowledge, this message of hope and potential. out into the general public, and into the hands of those considering healthcare reform, is crucial. It would also be great if rehabs stop presenting these defeatist messages, too. If I'd listened to them in rehab I would never have walked again, and my bone density would be decreasing daily while the number of kidney stones skyrocketed. I'd still be spending money on caths, when given my incomplete injury, they were eventually unnecessary. If I hadn't taken myself off the pee meds as an experiment, I'd never have known my urinary function returned. And since the uro at my rehab flatly told me NOBODY ever regains urinary function, and I had 0% chance of that happening, if I'd listen I'd still be cathing today. It was the rehab techs, that were making $7.50 an hour, that told me he was lying. THEY told me they'd seen people go home, discontinue the meds, and regain that function.

How many people never thought to ask the rehab techs, after the uro told them 0% of sci's regain urinary function?

CDRF's new stats are a great starting point. I am SO glad they took the step of compiling that data!

In my state, we not only have no Model SCI rehab, there is not one single public FES bike. Some people may own their own but there is nowhere you can go for PT and get to use one of those bikes. To the best of my knowledge, there is not one single suspended treadmill system either. Even in the rehabs that have them (like TIRR) the criteria is so stringent that I never saw anybody gt to use it.

All that corner-cutting is really increasing long-term costs of sci. I hope that knowledge makes it into the discussion when it comes to healthcare reform.