Declaration To Medicaid Appeals Court Trying To Make Me Pay Cost Share

We only ask for the constitutional right to represent ourselves in the conditions of our own affairs. Not all people with disabilities are capable of representing themselves, but there are many like myself who are. Though physically disabled, I am fit of mind to make decisions for myself. I require only a little amount of personal assistance to go through my daily routines in life. It took breaking my neck for me to realize the conditions of people with disabilities within mainstream society's current Medicaid system. I'm wondering whether it will take the same sort of cataclysmic tragic occurrence, say the system falling in on itself, for the government to realize the same.

You have denied my proposal for self-management in the concerns of my own care, citing precepts set by a system which has been appointed to overseer the proper allocation of funds set aside by the Government, to provide aide for those in different circumstances such as myself.

If the system that was mandated years ago to police funds for the needy does not in fact do what it was established to do, IT MUST BE PROPERLY ADJUSTED TO COMPLETE THE FUNCTION IT WAS BROUGHT INTO BEING FOR. IF IT FAILS IN THIS SINGLE AREA THEN SERIOUS QUESTIONS MUST BE RAISED AND NEW POLICIES WRITTEN, and therefore you cannot dismiss this proposal on the grounds, that this is the way it is just because it has been this way forever. That excuse will no longer suffice.

We charge that the system, as it is set up now, not only does not regard the concerns of its people, it has set it up that the majority of funds assigned for those needing are laundered away in support of institutions designated to provide the assistive care-namely nursing home and home health care institutions.

I cite my own personal experience as example. If the Commission would but listen, we propose a plan which would not only save the State thousands even millions of dollars, but it would also reduce the need for a monthly cost share to be incurred onto a population of persons who are already strapped for cash and living meagerly.

As a person with a disability, I, require adaptive aids and technology to grant me opportunity to access the same rights and choices in life you deem nonchalant. Simple things cost outrageously expenisve as disability is a costly affair. Already we must deal with life being more difficult and expensive, but to be asked to give up what we don't have seems overly ridiculous.

I found out that the Government has contracted with home health agencies paying $17.20 an hour, to some service provider when we could do the same ourselves for $8.00 dollars an hour. The system would rather spend $40+,000 dollars a year to house me, and other like me, in some nursing home facility when it spend just 1/3 of that service us in the community.. Even through community care the state would rather pay $1000 dollars a month to some home health agency to hire somebody else to give me aide 10 hours a week. Then send me a nice authorized letter asking me to quietly pay $180.00 dollars a month for the rest of my life citing insufficient funds when I could do the same myself for $320 dollars.???. Not even twice the cost share the sytem asks of me.

You've denied our proposal for CASA and requests for expanding the Independent Care Waiver, based on policies set up by the current system which oversees questions of this like. But already we have shown that the system as it is ISN'T WORKING AND DOES NOT PROVIDE PROPER ALLOCATION OF FUNDS SET ASIDE BY GOVERNMENT TO SUPPORT ITS DISABLED AND ELDERLY POPULATIONS.

I cannot allow myself to pay a monthly costshare especially when there is a different alternative which would rationally solve the dilemma of both parties involved as well as be a benefit to all involved and significantly help others who might find themselves in the same predicament. Let the voice of the people be heard.


My Own Story

As it is Medicaid covers for me a home health aide 10 hours a week. All was good until I received a letter from my community care case manager stating there was not enough funds to cover the extra hours I had requested, in fact, I now had to pay a $180.00 dollar a month cost share for services currently rendered as well as $700.00 for retroactive services.

The money I receive from the government to survive on is less than what people are making working for minimum wage. Not only can I not afford a cost share of any proportion, I as a citizen of this State cannot allow myself to be a willing victim to the currently biased Medicaid system which favors institutions over the will of the people. It is already hard enough for people with disabilities to live anything resembling a normal life, but it is near impossible to live life within the system as it is.

I asked my case manager how much Medicaid was allotting me each month. When she said $1000 dollars, I asked how the money was being used and who decided it should be used that way. She said that THE STATE AGENCY OVER COMMUNITY CARE HAD CONTRACTED WITH HOME HEALTH AGENCIES TO PROVIDE SERVICES THROUGH MEDICAID/MEDICARE AT $8.60 EVERY HALF HOUR OR $17.20 EVERY HOUR. The girl that comes to get me up in the morning is getting paid less than $6.00 dollars an hour.

THAT'S $11.20 AN HOUR BEING WASTED PAYING SOMEBODY ELSE TO PROVIDE A PERSONAL ASSISTANT WHICH, I, MYSELF COULD HIRE AT $8.00 DOLLARS AN HOUR.

Given Karen Bacheller's number, Head of Community Care for the State, I asked why it was that the system was set up the way it was because as it is 2/3 of the funds allocated by the State to provide service for people with higher level disabilities is being wasted away supporting the home health industry and not the people who truly need and are entitled to those funds. She said that the system was set up so to safeguard against fraud and help those incapable of setting up services for themselves. I then asked who was to safeguard us from the system?

I then had to cut 3 hours of service through community care to make up for the $180.00 dollar cost share. They then told me that it didn't matter if I reduced my hours because I have to pay the first $180.00 dollars. It was then I began the hunt on what next to do. So I sit now before you with proposal in mind.

The Proposal

I figured if I did my own hiring of a personal assistant paying $8 dollars an hour for 10 hours a week It would cost $80 dollars a week. Multiply that number with 52 weeks and you get $4160 which we subtract from the $12,000 dollars a year or $1000 a month Medicaid allots for my community care. IN ONE YEAR I WOULD SAVE THE STATE $7840 DOLLARS OR $653. 1/3 DOLLARS A MONTH WHICH IS MORE THAN THE $650 DOLLARS A MONTH I RECEIVE FROM FROM SSDI.

Using figures from the proposed Long Term Care Choice Act, if in Georgia a new policy were implemented like that of a Medicaid Waiver and only 10,000 individuals participated on this waiver $78,400,000 dollars a year could be saved by the State to redirect or reinvest whatever the case may be. Surely 10,000 people eligible to manage thejr own care can be found in the Atlanta area alone.

If I and others who are capable were simply allowed to represent ourselves in the choice of hiring and managing a personal assistant, the only difference to the State beyond immediate and long term savings would be a different set of paperwork each week, plus persons with disabilities would be returned the proper dignity to represent themselves as freedom of choice human beings.
We only hope this commission can see the clear rationale of our proposal to pass CASA and expand the Independent Care Waiver or program like it. It is totally unnecessary for funds to be used in the ways in which it is used supporting the institutions providing such aid over the people who need such aid. We await to adjust what has long been in need of change.

Declaration of Independence

I only ask for the constitutional right to represent myself in the conditions of this affair. I understand not all people are capable of representing themselves, but there are many who are. Though physically disabled I am fit of mind to make decisions for myself. I require only a little amount of personal assistance to go through my daily routine. It took breaking my neck for me to realize the conditions of people with disabilities within mainstream society's current Medicaid system. I'm wondering whether it will take the same sort of cataclysmic tragic occurrence, say the system falling in on itself, for the government to realize the same.

As it is Medicaid covers for me a home health aide 12 hours a week. All was good until I received a letter from my community care case manager stating there was not enough funds to cover the extra hours I had requested, in fact, I now had to pay a $180.00 dollar a month cost share for services currently rendered as well as $700.00 for retroactive services. The money I receive from the government to survive on is less than what people are making working for minimum wage. Not only can I not afford a cost share of any proportion, I as a citizen cannot allow myself to be a willing victim to the currently biased Medicaid system which favors institutions over the will of the people. It is already hard enough for people with disabilities to live anything resembling a normal life, but it is near impossible to live life within the system as it is.

I asked my case manager how much Medicaid was allotting me each month. When she said $1000 dollars, I asked how the money was being used and who decided it should be used that way. She said that the State Agency over community care had contracted with home health agencies to provide services at $8.60 every half hour or $17.20 every hour. The girl that comes in the morning is getting paid less than $6.00 dollars an hour. That's $11.20 an hour being wasted paying somebody else to provide a personal assistant which I, myself, could hire at $8.00 dollars an hour.

Given Karen Bacheller's number, Head of Community Care for the State, I asked why it was that the system was set up the way it was because as it is 2/3 of the funds allocated by the State to provide service for people with higher level disabilities is being laundered away supporting the home health industry and not the people who truly need and are entitled to those funds. She said that the system was set up so to safeguard against fraud and help those incapable of setting up services for themselves. I then asked who was to safeguard us from the system?

I figured if I did my own hiring of a personal assistant paying $8 dollars an hour for 12 hours a week It would cost $96 dollars a week. M<ultiply that number with 52 weeks and you get $4992 which we subtract from the $12,000 dollars a year or $!000 a month Medicaid allots for my community care. In one year I would save the State $7,008 dollars or $584 dollars a month which is almost equivalent to the $650 dollars a month I receive from SSDI. Using figures from the proposed Long Term Care Choice Act, if in Georgia a new policy were implemented like that of a Medicaid Waiver and only 10,000 individuals participated on this waiver $70,080,000 dollars a year could be saved by the State to redirect or reinvest whatever the case may be.

If I and others who are capable were simply allowed to represent ourselves in the choice of hiring and managing a personal assistant, the only difference to the State beyond immediate and long term savings would be a different set of paperwork each week, plus persons with disabilities would be returned the proper dignity to represent themselves as freedom of choice human beings.

II. The Long Term Care Choice Act now as it is written does not specify or lead into the abuses within the home health sector of Medicaid, however, it does focus on certain abuses within the nursing home sector. "Between fiscal year '93 and fiscal year '94, there was a 27% increase in the number of Georgians under the age of 65 who were placed in nursing homes. At least 25% of those who reside in nursing facilities do not need medical supports on an intensive basis, rather they need personal care for almost all of their daily living activities, these services can be offered in community settings. WHAT THIS MEANS IS THAT NEARLY 10,000 GEORGIANS HAVE BEEN UNNECESSARILY PLACED IN NURSING FACILITIES AT A COST OF MORE THAN $200 MILLION PER YEAR."

Alarming yes but not precise. According to ADAPT the average for placing people and keeping people in a nursing home for one year is $40+,000 dollars coming to a figure of over $400 million a year. ADAPT claims "Currently 1.6 million people are warehoused in nursing homes nationwide at a cost of over $60 billion annually, although the cost of community-based services is about a quarter of the cost of institutional services." In "No Pity" by Joseph Shapiro I found this quote "Most federal funding is directed to institutions and nursing homes, and that discourages states from setting up community programs, complains Dennis Harkins of Wisconsin's developmental disabilities office. In Wisconsin alone, two-thirds of such monies serves 5,500 residents of nursing homes and institutions, while a third pays for 25,000 people in community programs." Using ADAPT's figures 1/4 of 400 million is 100 million leaving an additional 300 million dollars saved for redirective purposes.

What is it like in a nursing home for a young person with a high level injury perfectly healthy and sound of mind with no hope of anything other than the same boring routine of neglected care? Example, David, 32 years old, currently locked away in a rundown reeking nursing home facility 2 miles down the road from me. He been in a nursing home for nine years since being released to the community from the hospital. It has been 6 months since David has even gotten out of bed ,for even if he gets into his chair, he can not leave the room as his chair does not work, and nobody is allowed outside so as to prevent anybody from running away. I asked him why he doesn't get out of bed and he told me "This place is depressing." He says he would like to be out in the community but has little hope of it becoming a reality. There has to be a solution for the millions in his same predicament.

With the implementation of The Long Term Care Choice Act covering both the home health and nursing home sectors, in Georgia alone some amount up to or even surpassing $370,080,000 dollars a year could be saved and implemented in different ways rather than lost in the red tape of the system. Even if the numbers did not reach such monstrous proportions shouldn't even a number of $10 million dollars warrant a little investigation from this Board? Again I stress the only thing that would change for the Government would be immediate long lasting savings and different paperwork from different people.

Already "More than half of the states have elected to develop community supports by utilizing The Personal Care Option offered by the federal Medicaid program. This option is not used by any of the Southern States even though this service is critical in preventing unnecessary nursing home placement. Several states in the New England area (Rhode Island, New Hampshire, and Connecticut) have virtually eliminated services for people with mental retardation."

Surely it could be beneficial for both the people and the government to focus upon creating some legislation like The Long Term Care Choice Act. It would be a win-win situation without having to further cut what little benefits we already recieve from the government as people with disabilities. The decision is being decided on what best to do and what to do with funds allocatted by Federal Programs if measures were made to cut such aid. I as a person directly affected ask you to give insight into ideas we have brought forth as a community of citizens. All we ask is that you see and remember there are real people and not just numbers behind decisions made here today and in the future.