The Long Road Home II

The Long Road Home II

I invite individuals to join Georgia disability advocates for the Long Road Home II campaign, a 5 day rally across the state to promote support and public awareness for MiCASSA (S. 401, HR 910) – the Medicaid Community Attendant Services and Support Act and MFP (S. 528) - the Money Follows the Person Act. MiCASSA establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled or currently in a nursing home or other institutional services would have the choice where and how these services are provided. MFP would authorize the Secretary of Health and Human Services to provide grants to States to conduct demonstration projects that are designed to enable medicaid-eligible individuals support for appropriate and necessary long-term services in the settings of their choice, often at a cost much cheaper than the annual cost of warehousing individuals in nursing homes or institutions.

According to Steve Gold (www.stevegold.ada) Most states currently have no mechanism to determine if a person would want to stay in the community with support services such as community care or the independent care waiver. He said, “The irony is that your state could receive reimbursement for case management services to meet with each person BEFORE she or he enters the nursing home.” National data from the MDS report – 3/31/05 - (Minimum Data Set (MDS) is a comprehensive resident assessment that Medicaid-contracted nursing facilities are required to submit to the state electronically) 27% of the 1.4 million persons in nursing homes lived alone before going to a nursing home, 56% lived with other persons, and only 17% lived in another facility. The overwhelming bulk of persons go to a nursing home directly from an acute care hospital (58%) from a Rehabilitation Hospital (10%) and another 17% of persons go to nursing homes directly from their own homes.

ADAPT wants state governments to utilize the available federal case management funds to determine appropriate community services BEFORE individuals go into nursing homes especially since once a person becomes institutionalized, they usually lose their apartment and all available support systems. The Long Road Home II campaign seeks to educate the public about the nursing home, institutional bias of long term care in our country and the growing movement of acceptance toward physician assisted suicide. Since the murder of Terri Schiavo, the aging and disability populations are put increasingly at risk by prejudice dehumanizing our lives.

Take for instance the case of Georgia’s own Ora Mae Magouirk. Due to glaucoma and because she lived alone, Mae relied on her 36 year old granddaughter, Beth Gaddy, to run errands and bring her food. Days after Terri’s murder, Beth moved Mae from hospital to hospice, determined to starve and dehydrate her to death. Hospice-LaGrange accepted Mae as a patient even though she was not terminal and without verifying Gaddy’s legal authority to act on her grandmother's behalf. Beth it seems had grown weary of taking care of her grandmother, telling Mae’s brother McLeod and nephew Ken Mullinax from Alabama, "Grandmama is old and I think it is time she went home to Jesus. She has glaucoma and now this heart problem, and who would want to live with disabilities like these?"

Upon Gaddy's request, Hospice-LaGrange denied Mae normal nourishment via a nostril feeding tube or fluids via an IV. She was then sedated with morphine and ativan. In her living will, Magouirk stated that fluids and nourishment were to be withheld only if she were either comatose or "vegetative," and she was neither and yet the hospice complied with Gaddy's request. Mae endured 10 days without food or water until her story reached the internet, where upon members from national Not Dead Yet and newly organized blog site euthanasia resistance groups; pressured the situation enough that Beth was forced to yield, and allow Mae to be airlifted to the University Alabama Birmingham medical facility where she immediately received emergency food and hydration. Once stronger, Mae celebrated her new lease on life by requesting a fried chicken sandwich and a bowl of ice cream.
Her case is exemplary of a larger and more serious problem, detailed in an April 15, 2005, 29 page report released by the Robert Powell Center for Medical Ethics called “Will Your Advance Directive Be Followed?” The study asserts that, “In the wake of the Terri Schiavo case, many authorities are urging Americans to complete advance directives. Every state authorizes these legal documents, which allow a person to specify whether and under what circumstances she or he wants life-preserving medical treatment, food or fluids when no longer able to make health care decisions. However, the laws of all but ten states may allow doctors and hospitals to disregard advance directives when they call for treatment, food, or fluids. Increasingly, health care providers who consider a patient’s ‘quality of life’ too low are denying life-preserving measures against the will of patients and families – and the laws of most states provide no effective protection against this involuntary denial. The result: in most states, if you want life-saving treatment – or even food and fluids – there is no guarantee your wishes will be honored, even if you make them clear in a valid advance directive.”

In four very powerful chapters the study concludes - “1.) The Public Believes Patient and Family Choices for Life-Preserving Measures Should Be Respected, Even When Health Care Providers Disapprove, 2.) Health Care Providers Are Increasingly Denying Life-Preserving Measures In Contravention of Patient and Family Directives Choosing Them, 3.) Denial of Care as “Futile” Is Often Based on “Quality of Life” Rather than Physiological Grounds, and 4.) Most State Laws Fail to Protect Patients and Families Who Want Food, Fluids, or Life Support When Health Care Providers Deny It on Quality of Life Grounds.”

In light of this study the public must also realize that the “Living Will” is a document that was crafted by pro-euthanasia, right-to-die groups as part of a 3 step strategy to implement euthanasia in America. On August 16, 1985 USA Today released an article entitled "Living Wills 1st Step, Euthanasia Group Says" detailing their sinister plot. Derek Humphry, the Director of the Hemlock Society, said in a 1986 interview; "We have to go stage by stage, with the living will, with the power of attorney, with the withdrawal of this; we have to go stage by stage. Your side would call that the 'slippery slope'... We would say, proceed with caution; learning as we go along how to handle this very sensitive situation." What lies after the “Living Will” and subtle acceptance of certain instances of euthanasia? According to pro-euthanasia groups step 2 is physician assisted suicide which Oregon and now California already have; to be followed by step 3 Kevorkian like direct euthanasia. Dr. Leo Alexander, an expert witness at the Nuremberg trials, wrote that the crimes of the Nazis, before the gas chambers, "started from small beginnings" -- the acceptance that "there is such a thing as life not worthy to be lived." Everyone faces end of life issues aging, disability, death, dying. nobody wants to suffer needlessly nor inhumanely. How people are treated in end of life issues and quality of life issues determines how people react to the services of government programs, hospitals, and care institutions. For food and hydration to become acceptable medical treatment to be forcibly denied in certain instances is preposterous and indicative of cruel and unusual punishment that the Constitution protects even the worst criminals from. We do not even condone the treatment of animals in such ways.

How can people like myself as a quadriplegic; a state of being not highly valued by society or Hollywood as seen in Million Dollar Baby, trust any health care worker in America should my life be on the line? We need only look to Holland for a vivid glimpse of America’s future should we not challenge the implications the "Living Will” and the current push for acceptance of physician assisted suicide means to all of our lives. Dutch cardiologist Dr. Richard Fenigsen in his work “Holland Euthanasia Experience Described” informs us of how more than 40 percent of all Dutch physicians have admitted to killing one or more of their patients against their wills and how most Dutch, especially the elderly, are extremely afraid of doctors and, even more so, of hospitals.

In Holland the number of nursing homes has decreased by more than 80 percent in the last 20 years, and the life expectancy of the few healthy elderly who remain in such homes can in some cases be measured in hours.”- Human Life News 1990 Dutch citizens were forced to resort to a defensive document put out by the Sanctuary Society, entitled the "Declaration of a Will To Live," which states that they do not want to be euthanized without their knowledge. Dr Fenigsen said - These documents carried little worth with doctors who believe it their right to determine the value of their patient’s lives. What matters is not what the patient desires, but what the physicians see as beneficial to the medical profession and to society at large.

With the medical profession listening to the advice of bioethicists like Princeton’s Peter Singer, our culture is quickly losing reverence for the sanctity of life and everyday allowing the starvation/dehydration of children born with disabilities and adults considered worthless to society. Singer who champions the cause of animals claims that children are born without awareness and that "the life of a newborn is of less value than the life of a pig, a dog, or a chimpanzee.” He advocates allowing parents and medical professionals the power to starve/dehydrate children born with severe forms of spina bifida, which, he says "can affect as many as one in 500 live births" and children born with Down's syndrome, which too is not a rare event.” Unless we confront these issues now, we may never return to a space where all life is valued, protected, and honored. We are moving from innocence to sin, for who will protect those citizens that cost more than government institutions are willing to spend. Was not government instituted to care for the public through social services and social programs?

Disability advocates want community supports which empower the individuals to live in ‘the most integrated setting’ as promised by the 1999 U.S. Supreme Court decision Olmstead vs. LC/EW. We want government to comply with the Americans with Disabilities Act, creating the support network that allows for the aging and disability populations to be an inclusive part of the community without first having to go through institutional care. We want a support structure which does not bankrupt families trying to aid a family member. A study published in the journal ‘Health Affairs’ estimated that medical bankruptcies affect about 2 million Americans every year. Half of all U.S. bankruptcies are caused by soaring medical bills and most people sent into debt by illness are middle-class workers with health insurance. Fewer than 1 percent of all bankruptcy filings were due to credit card debt.

People with disabilities and the elderly community will always be an integral part of the collective whole. Will our country decide now certain people are not worthy of life when still returning from Iraq and Afghanistan is a whole population of severely wounded soldiers, with life-long permanently debilitating injuries. Will our country turn their backs on those who had been injured fighting for our freedoms risking their lives based on decisions made by the leadership of our country.

We must not abandon families in their most crucial time of need. We are judged as a society by how we treat the least among us. They/We and their/our families deserve the best America can offer as we give the best of ourselves to America. Long-term care must empower individuals to live the best lives that they/we can with the circumstances that they/we must deal with. We propose MiCASSA and MFP are the answers to fixing our broken system of health care management, long out dated, and long in need of repair.
Government should reflect the wishes of the people, and the wishes of the people are to live in their/our own homes. We are guaranteed equal stature and protection by the very documents our country was founded upon. We cannot allow the very institutions put into place to protect citizens to devalue and dehumanize a certain part of the populace. We want our governor and all governors to expedite their Olmstead mandates and help move people out of the institution and back into the community where they/we belong. We want the Waiting Lists for community supports to be unlocked - many for years have been waiting for assistance. Join Georgia advocates from June 19, to June 22, 2005, as we march across Georgia informing people of these important issues. They affect us all and should we get what we want, it may just save the quality of your life one day. Help us to help you.

For more information contact Cheri Johnson Mitchell at (678)755-6015.



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