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Latest News
March 5, 2008
Medicaid Buy-In
The Medicaid Buy In is operational! At long last, people on Social Security Disability Income have the opportunity to join (or return to) the workforce AND buy into a Medicaid for health insurance. To learn more about Georgia Medicaid for Workers with Disabilities, visit www.gmwd.org
The Council thanks the staff in the Department of Community Health's Eligibility Office, Brian Dowd, Warran McNeill and Yvonne Dove, for their perseverance and Shepherd Center's Benefits Navigators, Sally Atwell and Curtis Rogers, for their practical advice. And of course, without the leadership of Senator Goggans and the support of the General Assembly, there would be no program to implement.
Please let us - and your legislators - know if the program works for you!
February 24, 2008
An Open Letter to the Money Follows the Person Steering Committee
Dear Committee:
Needless to say, my level of frustration with this project reached the boiling point at the last meeting I attended back in December. If I had to characterize it in a few words, it would be this: The Georgia MFP project is making the simple complex …and the complex impossible. Perhaps this is because the Centers for Medicaid & Medicare have created a difficult context for MFP projects. But in such circumstances, one can choose to participate in the chaos – or not. We already know a lot about how to re-settle people from institutions, yet we’re spending hundreds of person hours re-inventing protocols, processes, procedures, SWAT meetings and “values” discussions. And we do all this while institutionalized people wait…and wait…and wait some more. And some of them die while waiting for us to figure out whether or not people “choose to live in institutions.” I must tell you that the nursing home industry is more honest about this than many of the people on the MFP steering committee, especially those from the Aging system. In Independent Living, we learned this lesson back in 2001 when the Georgia Department of Medical Assistance and the Centers for Independent Living applied for and received federal “systems change” grants. These grants were intended to change the long term care system from one approach – nursing facilities – to another approach – long term care in or near one’s own home.
As one might imagine, such enormous change can be threatening - especially to those who work in or for the nursing home industry. But we worked with industry leaders, some of whom cleverly tackled this threat by creating opportunities to think about the situation differently. In her training sessions, Mary Eleanor Wickersham asked audiences of nursing facility administrators the following question: “How many of you expect to live out your final days in one of the facilities you manage?” In most of these sessions, not a single person raised his or her hand! In this exercise, it became clear that no one – not even the people who do their best to make nursing facilities as good as possible – wants to end his or her days in one. No one “chooses” a nursing facility willingly. This “back against the wall” choice occurs because the alternatives are…
- unknown
- unacceptable
- unavailable
Unknown
In his book, Rules for (Practical) Radicals, Saul Alinsky offers a tool kit for those who want to create social change. One of the most powerful lessons he articulates is this: People never ask for what they think it is impossible to get. Jenny Langley taught me the undeniable truth of this statement. Jenny broke her neck in a car accident. Like Christopher Reeve, she was paralyzed from the chin down and needed a ventilator to breathe. I met her in early 1990 after she was abandoned at a rehabilitation hospital because her family found it impossible to provide the necessary care. When I asked her what she wanted for her life, she responded “I want a nursing home in Georgia without bugs.” The only option with which she had been presented was a facility in another state where she had witnessed roaches crawling on people who were unable to swat them off. So her wish for herself was just a little better than the misery she had witnessed. Had there been a nursing home in Georgia without bugs, Jenny would have “chosen” it.
Unacceptable
I’ve seen this in my own family. My grandmother on my mother’s side always said “I’ll go to the Poor House before I live with one of my kids.” (Historical note: Yes, there really were “Poor Houses.” They were county-based institutions developed in the 19 th century as a more cost-efficient alternative to providing tax supported “relief” - food, clothing, fuel and medical care - to individual “paupers.”) My mother has the same attitude about “becoming a burden to her children; when I can’t take care of myself, I’ll go to a Home.” The segregation and separation of older people is a cultural norm that is gradually changing because baby boomers like me – and most nursing facility administrators - expect something more.
One of the saddest facts to me is that Georgia’s service delivery system for frail elderly people views the nursing facility as “part of the continuum of care,” a fully acceptable, inevitable consequence for old people with no family capacity to cope with their mental confusion or worse yet – their incontinence.
Unavailable
People who are excellent providers of home and community-based services are besieged by people who want what they have to offer. As we have seen, not even the people who operate them want a nursing facility for themselves. So where there are known, good alternatives, there are also long waiting lists. For decades, scores of people have been working to change the system so that there is more public funding for the services people want. And yet, most of our long term care dollars go into the system people DON’T want. Why? We come up with all kinds of reasons…there is no housing, no transportation, insufficient support services, too few doctors, and so on. But all of those “reasons” don’t get to the heart of the matter. The truth is there is no vision. There is no commitment to a very simple idea – everyone can and should live out their days in their own home with or near the people who care about them.
So now what?
The Money Follows the Person project must have absolute, uncompromising commitment to a simple idea – that everyone can be supported in his or her own place. And yes, I know this achievement isn’t possible in my life time. It isn’t possible to perfectly adhere to the principles of one’s religion, either. But those simple, clearly articulated ideas give us a standard for which to strive. We cannot continue to accept something for “those people” that we won’t accept for ourselves. We cannot continue to tell the lie that “some people choose facilities” or that “we’re making progress.” The 2001 systems change grants didn’t change the system – at least not for the better. In the 18 years that I have watched the Independent Care Program, it has gotten worse! People who rely on ventilators or other technology are back in no person’s land, just like they were in the 90s - exhausting their loved ones, being abandoned in hospitals or exiled to neighboring states - the complex has again become impossible. I don’t have much hope that the Georgia Money Follows the Person project will change this painful reality. I don’t see vision. I don’t see commitment. I don’t see a sense of urgency. What I do see is excessive planning, processing and pondering…while people wait.
Pat Puckett
Executive Director – Statewide Independent Living Council of GA, Inc.