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NEWS & LETTERS, October-November 2006Tennessee campaign: nursing home industry steals people's livesMemphis, Tenn.—A key issue for most people with a significant disability is to be able to choose home-based services rather than being institutionalized. There is this huge void in Tennessee for those who need physical assistance performing what is called "the daily activities of life": bathing, dressing, toileting, and eating. People with visual impairments may need a driver or reader. People with cognitive disabilities would have assistance with shopping, making appointments and decisions in their lives. A huge disconnect exists in having the services available because the State believes that if you have significant needs that you or your family can’t afford to take care of, then the State sees its obligation as being met by warehousing you in institutional settings. That’s the rub. Moving into an institution means giving up all we hold dear. You lose control of the tiniest decisions: what do I eat or wear, what time do I get up in the morning, where would I like to go—your individual schedule is gone and the institution decides these questions. You give up having your own home, having people over when you choose, having a sex life, a romantic life, and being part of your community. It’s not humane to segregate people in nursing homes, that’s obvious. Furthermore, it is much cheaper to live in the community with support services. Most nursing homes in Tennessee receive $30,000 to $40,000 a year per person. Community-based services may cost half of that or less. My organization, Memphis Center for Independent Living’s, main focus is to change the way Tennessee does business, and it’s going to be a struggle. This year we introduced a bill, the "Community Choices Act," to our legislature. It didn’t get very far, but will be re-introduced in January, and we will be stronger and wiser. In the meantime, we’re working hard to educate legislators. We also educate those with disabilities about what they can demand and help them understand that this can be a reality if we all work together. Our campaign, "Money Follows the Person," was developed to show that the dollars set aside for people with disabilities and older people who need personal assistance are now only for institutional care. We believe that same money should be available for the person to use in a community-based setting—their own home or with family members. The nursing home lobbyists are very strong. They contribute heavily to our legislators’ and governor’s campaigns. When we say the money should be spent to help people stay in their homes, they 9say, "No! That’s our money." The nursing home industry is a huge business that generates mega-profits. A few months ago we did a collaborative action with ADAPT (a grassroots civil rights organization for people with disabilities). Five hundred of us assembled in Nashville from all over the country to make clear what it means to live in nursing homes rather than our homes. We blocked streets with our wheelchairs, which made headlines. Our local ADAPT chapter and MCIL have done several actions around Memphis and in Nashville. We’re seeing things slowly change, even how people are discussing the issue and how some community-based services are being provided. One action was a picket of a political fundraiser to embarrass Gov. Bredesen, for his atrocious gutting of TennCare (see September-October 2005 N&L) and his total lack of accountability to our repeated requests to introduce "money follows the person" legislation. We picketed outside the hotel so that everyone driving their limousines into the parking lot saw our signs, and then we crashed the party to give Bredesen our press release and let him know just how serious we are. —Deborah Cunningham, MCIL |
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