Critical Mass

These are the opening paragraphs in an article entitled "Fla. Medicaid Recipients Want Out of Nursing Homes."

Charles Todd Lee spent a lifetime going backstage at concerts, following politicians on the campaign trail and capturing iconic shots of everyone from Martin Luther King Jr. to Mick Jagger to Mickey Mantle. Today, he enjoys such freedom only in his dreams.

The 67-year-old photographer has been confined to a nursing home for five years, the victim of a stroke that paralyzed his left side. And he's angry.

"Most of the people come here to die, so you want to die," he said. "It is a prison. I can't escape it.


The article ends with a quote from John Boyd, 50, (who) has been in a nursing home for the last nine years. He hates them. He became a quadriplegic 36 years ago when he fell off a wall and broke his neck.

"I can't choose what meal I want, I can't have a visitor after 8 o'clock — it's just like a prison without bars," he said. "People are making decisions for and about me that don't even know me or even care about me. All they care about is the money they're getting for me."

Since our journey through the American healthcare system began last February, articles like these tend to catch my attention. The stories from patients like Mr. Lee or Mr. Boyd illustrate the limited options available to people who, like Keith, still have a lot of life left to live but, because of their disability are relegated to institutions just because that's the only option Medicaid dollars will pay for at this time.

This is a shameful state of affairs. As a country we are warehousing people who are willing and able to contribute but are prevented from doing so because of the powerful institutional/nursing home lobby that has heavily invested in maintaining the status quo and the short-sighted politicians who enjoy the benefits of that status quo.

What will it take to bring Mr. Lee, Mr. Boyd and others back into their community? Well, in the state of Florida, they've filed a federal lawsuit seeking class-action status on behalf of 8,500 institutionalized Floridians based on the premise that the state is illegally forcing them to live in nursing homes when they should be able to live where they choose. Should they be successful, not only will these patients be free to create independent lives, but they will also be setting a precedent for other states to follow. You can be sure we'll be keeping a close eye on this case.

While there is no guarantee that Texas will follow anybody's lead, it gives us a bit more hope that we're not alone on this journey and that the critical mass needed for institutional change is growing. Stay tuned.