Tuesday, July 26, 2011

Blog for Access - July 26th, Anniversary of the ADA

When my mother passed away, my father, sister and I went about the business of going through her stuff. Some of it we wanted for ourselves, or to pass down to the grandkids. Some of her things, though, were carted off to places such as The Lighthouse for the Blind, or Hospice or other charities. Things like electronic screen readers, books on CD, talking timepieces, a power wheelchair, and all sorts of Assistive Technology.

Ma was lucky: she had really great insurance that covered the costs most of this equipment. Or rather, she was lucky AND smart: when she retired, she devoted a chunk of her retirement savings to pay for insurance for life. Most people don't have this option. I thank God my mother did. It made it possible for her to be as comfortable as possible when her multiple disabilities caused her pain, took away her eyesight, and compromised her mobility. The fact that she had excellent coverage also meant she was able to live in her own home, right until the end. Without ramps, rails, and a bunch of other devices that made her home easy to maneuver, there's no way my mother could have stayed at home. 

When we talk about access in regards to disabilities, we most often talk about physical access. The ramps and rails were great. The screen readers and talking machines were great. But those items can only be useful if they're accessible. And, by this I mean that they're great for people who can afford them or whose insurance helps them defray the costs, but more of a pipe dream for people who can't. This is a whole other type of access that people with disabilities have to deal with every day: the AT exists, and it can make the world more accessible, but some of it is exorbitantly expensive. It's only useful to people if they can actually get their hands on it.

The very tools that have been designed to provide greater access are not financially accessible to most Americans.

I remember talking to the social worker at the dialysis center where my mother had treatment four times a week. He told me that my mother wasn't like other patients he dealt with. She had great insurance, he explained, and great insurance gave her options. Most of the people he saw had little or no insurance, or relied on Medicaid or Medicare. I was shocked to find out that several of the regular dialysis patients were homeless, and living out of a tent city set up by the town council. The federal government guaranteed them access to dialysis treatment, but little else. Even if they were able to find affordable housing, the chances of being able to modify that housing to make it accessible was next to nil. For these people, there are few, if any, choices about independent, community-based living.

So, when Ma passed away, we packed up most of her AT, and donated it to different charities where other people with disabilities could make use of it. Some it was practical stuff: items to help people get dressed or read or tell time or get around. Other things were just for living life: tactile and large print board games and playing cards, a giant remote control, a wide selection of books on tape and CD. It felt good to pass those things along - to provide access to a few people. But it's not the answer. We need to work, as a country, to make not just emergency healthcare something that every person can access, but to make accessible the basic things people with disabilities need in order to truly have options they can explore.

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