AuthorErvin, Mike

If you're wondering what life is like for many disabled folks in the United States, think about those television commercials for amusement parks like Great America.

You see people of all ages having all kinds of fun. They ride wild roller coasters and eat cotton candy. It's a perfect summer day.

Now think about what these commercials don't show--the most unamusing and inescapable aspect of a day at the amusement park, which is waiting in lines. It's just like car commercials where there's never another vehicle on the highway and ads for tropical resort vacations where the loving couple have the oceanside beach all to themselves.

Disabled folks spend a lot of time waiting in endless, slow-moving lines. Except these lines are more like bread lines than amusement park lines. When you finally make it to the front of an amusement park line, you receive something fun and frivolous, like a roller coaster ride or cotton candy. When you finally make it to the front of a bread line, you receive something you can't live without, like bread.

Sometimes disabled people wait in line for years. And the lines are often invisible. We're stuck in limbo.

Take, for example, the HCBS waiting lines. HCBS stands for Home and Community-Based Services. Suppose you're like me and you need the assistance of another human to do the everyday stuff everybody does, like putting on your pants, washing your clothes, taking a shower, and so on. If your state has HCBS programs, it might pay for people to come to your home and assist you. That's what I do. I've hired people to assist me through an Illinois HCBS program for thirty-five years. The state pays the wages of my assistants. It's a great thing.

But I'm lucky. A study by the ADA Participatory Action Research Consortium found that, in 2016, the largest HCBS program had a nationwide waiting list of 656,195 people. Texas was the state with the largest waiting list of 232,068 people.

What do people on waiting lists to receive home-based services do in the meantime? This is a damn good question. It's not like they can hold off showering or putting on their pants for a year or three. I don't know what I would do. I sure couldn't afford to pay the wages of my workers out of my own pocket. I guess before long I'd be forced to wave a white flag and go to some stinking nursing home. There are no waiting lists for that.

In Illinois, where I live, there isn't supposed to be a waiting list to receive help from the HCBS program that...

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