|  This is purposal I tried present at the Green-Rainbow Party State Convention on this last Saturday. We did have enough time to talk about things so it got deferred until our next meeting in October.
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As many of you know, I have spent over a decade working to pass a National homecare legislation formerly called MICASSA the Medicaid Community Attendant Services and Supports Act, along with many of my colleagues both disabled and not disabled in the disability rights movement around the country.
This year, the bill has been renamed the Community Choice Act in effort to illustrate that if you wish to stay in a nursing home and this bill passes, you still have the option to do so. What the bill would eliminate, however, is the need for people to move and leave friends, family and support structures that are already in place in order to receive independent living services such as personal care assistants. Right now, you have to live in a state or area that provides these services in order to get them.
Take me for example: In 2000, I had to move from Pennsylvania to Massachusetts in order to receive an adequate number of personal assistance hours and housing subsidy. If I would have remained in Pennsylvania (which I badly wanted to do) with my family, friends and job that I liked very much, I would have received no housing assistance and only three hours of PCA care a day. In Massachusetts I receive 16 hours of PCA care per 24 hours, and have a rental assistance voucher. Granted my life is not perfect, but at least it is survivable. I don’t feel that it is very American (at least in terms of the America I want) to tell someone they have to move in order to survive. But it happens every day to disabled people all over our nation with various kinds of disabilities, not just physical, but mental, psychological and emotional as well. People who are perfectly capable of having jobs and living independently with supports cannot do this merely because of where they are currently located. While I enjoy living in Massachusetts very much now and am blessed with many new endeavors, friends, and adventures that I never would have met or had, if I didn’t move; I still feel that moving here should have been a free choice rather than a survival-based decision.
According to the Ten Key Values of the Green Party, which we have all agreed to, the Green-Rainbow Party of Massachusetts can and should take a stand in support of the CCA. The evolution of the CCA from the original bill that only specified support for people with physical impairments was brought about by advocates with other disabilities clearly asking the crafters, “What about us?” Of course, in the minds of the people who wrote the bill, these people would be served as well. After it was called to their attention that the wording was less than specific, it was altered because the writers did not want to give Washington an out. I think this is a fine example of Grassroots Democracy, the first key value.
The second key value of Social Justice and Equal Opportunity is also served by the bill. It is not socially just to have to move away from people you care about in order to avoid going into an institution. You cannot say that disabled people have equal opportunity when they are forced into Nursing Homes because they and their families don’t have the resources to privately pay for homecare.
This bill also supports the fifth key value of Decentralization because it allows disabled people with help from friends and family if necessary to decide what services are appropriate for them, and individually design their own support structure as they see fit.
We very rarely think of supporting something like the CCA as a means of supporting key value number six, Community-based Economics and Economic Justice, but it is. Again, using myself as an example, I receive 111.75 state paid for hours of support per week, and my PCA’s get $10.84 per hour, more than most PCA’s throughout the nation by a dollar or two. Therefore, the total state expenditure for my care is $62,991.24 per year. Yet if I were in an institution, my bill would be $87,500 per year according to Kiplinger’s personal finance report of March 2004, and I’m sure the price of institution care has gone up since then, though I have no later data. According to the Center for Medicare and Medicaid services, over 8,200 of our fellow Massachusetts citizens who live in institutions wish to rejoin their communities and live independently. If every one of these 8,200 people needed the same level of services that I do, (bearing in mind that most people need less services than I,) simply by switching these people who have already expressed a desire to live independently into homecare services, the state would save $516,528,168.00 per year, every year. I’m sure we can all think of better things to do with our state tax dollars than imprisoning disabled people who commit no crime in places they do not want to be.
One can also say that allowing disabled people to hire their own workers and set their own care hours encourages community-based economics directly. I, for example, employ between 5 and 7 people usually, and for three of them I am their only source of income. If I went away to an institution, what exactly are these three people supposed to do?
One usually also doesn’t think of homecare as promoting our seventh key value of feminism and gender equity, but one look at the statistics clearly illustrates this point. Most of the unpaid caregivers in our society are women: Mothers, daughters and wives who must forego participating in activities they would enjoy and earning in some cases a living because they must take care of a disabled person. Often they are quite happy to do this, and I don’t mean to minimize their contribution, but wouldn’t it be nice if they had the option for both themselves and the disabled person to hire extra help as needed?
Respect for diversity is a major goal of the Green-Rainbow Party, and we have struggled with it. You cannot hope to respect every body without allowing every body to have what they need to function. News flash: not every person who wants to participate in broader society can get dressed or go to the bathroom by themselves. This doesn’t mean they shouldn’t participate.
The most important key value supported by the CCA is future focus and sustainability. We cannot afford to force people into nursing homes who don’t wish and don’t need to be there at a great expense to ourselves and our state. Massachusetts is always complaining about its’ lack of financial resources, which we have seen illustrated in reduction in food stamp programs and housing subsidies as well as increased class sizes in schools, and on and on. I think it would be more future-focused to allocate the 516 million dollars that would be saved through the CCA to funding these programs rather than using it to keep disabled people in places that they don’t wish to remain. How much longer can we afford to engage in this foolishness?
The current status of the CCA is that it has been referred to the Energy and Commerce Committee of both the House and the Senate. Currently only one of our Congressional Delegation, Senator Edward Kennedy, has signed on to co-sponsor. The other eleven members, all of whom are Democrats, are noticeably absent from the co-sponsor list. I think that we, as the Green-Rainbow Party, ought to have some fun with this comparison. If we decide to endorse the CCA, we have a tool to display to disabled citizens in Massachusetts (who are practically programmed to vote Democratic) who is really on their side.
Whether or not this convention endorses the CCA, which I hope it does, I encourage each of you to bother those eleven absent delegates, who represent you regardless of your Party affiliation to support the Community Choice Act (Senate bill 799 and House bill 1621).
Related Resources: display cases, home care services, independent living center, nursing home care
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