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Ragged Edge EXTRA!

Losing control over our own lives -- again By John B. Kelly Every year, we fear that the latest proposals from Medicaid will be allowed to stand. Every year, we are angry that the value of our lives keeps being discounted, this year by 30 percent if Medicaid has its way. Earlier this spring, crips from across the state of Massachusetts packed a hearing in Boston to insist that state officials' plans to yet again cut funds for personal assistance service would end up landing people in nursing homes. Their concerns are echoed each year by crips across the nation, as their states trim budgets by cutting the hours and eligibility of personal assistance programs -- even though cuts only ensure that more people end up in nursing homes, at a higher per-capita cost to the state. Advocates were also outraged at the administration plans to move the task of evaluating eligibility for services from independent living centers to the state, which they claimed was a cost-cutting move that would only hurt disabled people. Massachusetts' PCA program serves more than 8,000 people. Federal money covers half of the program's $200 million annual cost, according to the Boston Center for Independent Living. State officials say the program's costs soared 21.5 percent in FY 2002. BCIL director Bill Henning told reporters that the increase in state PCA spending was due to the program's success --and stressed that it was more dignified for the disabled and less expensive for the state than nursing homes. During the last five years of the economic boom, when consumers could not offer prospective workers anything more than a low-wage job without any insurance or benefits, we had to fear being deprived of our ability to attract and keep good personal care assistants. Many of us were plunged into crisis, where our whole lives had to stop so that we could scramble to fill our most basic needs, where we had to put up with abusive or dishonest workers because we couldn't find anyone better. Now we have to fear for the concept of independent living itself. Medicaid wants to seize control of the nursing evaluation process from the independent living centers. This state agency intends to violate the very principal of independent living, which was founded in order to free disabled people from government control, to free us from the time when we were seen as patients with little say in our own care. The whole point of independent living is that we consumers, as experts in our own care, collaborate as peers with professionals steeped in independent living philosophy in the process of evaluating our needs. We cannot trust nurses hired by Medicaid not to revert to a "medical model." We simply cannot trust that nurses hired by Medicaid, no matter how ethical and skilled as individuals, will not be subject to either direct pressure to slice away hours, or indirect pressure to "contain costs" under a medical model system. There is no way around it, this will be a conflict of interest, a power grab that must not be permitted. Everyone knows that the reason Medicaid wants to take over nursing evaluations is to cut expenditures. Why else would they do it? So now we fear for cuts in our own hours. Medicaid, with its ability to deny, modify, or approve nursing evaluations, already has oversight over the evaluation process. This is plenty of influence, as many of us here can attest, those who have had to appeal a Medicaid denial just to hold on to pca hours. And then we have to fear that the proposed 30 percent cut in the capitation rates for skills training will put independent living centers over the brink. We fear the centers will be squeezed out of their ability to provide the skills training that makes independent living possible. More people should be receiving skills training services, not less. Based on that tired old, stupid myth of "efficiency," independent living centers are supposed to cut staff and work themselves harder to do this crucial work. Starving is not a form of efficiency. But everyone knows we fear these things. How could we not? Whatever control we have is threatened, whatever services that we might need may not be available. So we come, every year in this ritual full of fear, frustration and anger, to tell you commissioners how the latest misguided Medicaid proposals will damage our lives. We are frustrated that we have to go through this every year, frustrated because we know for sure, and prove every day, that independent living works, both for the individual and society. No one ever says otherwise, so why the constant harassment? Why, after all these years, must we fight again for one of the cornerstones of the independent living movement, autonomy over our own lives? And every year we go way angry that our lives are discounted, that politicians dreaming of higher office congratulate themselves for being "responsible" as they hack away at the quality of our lives. John B. Kelly is a Boston-based disability activist working on a Ph.D. in Sociology at Brandeis University. His other stories for Ragged Edge have included Michael Moore and Me and Incontinence. WHAT DO YOU THINK of what you've just read? Click to tell us.

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