On behalf of Endeavor Freedom and Georgians with Disabilities-
Thank you. Thank you for taking the necessary steps to develop a law which will protect people in our great state from the nightmare scenario of forced starvation dehydration. I understand that you are asking for testimony so that you can better understand this issue. I would like to submit this written testimony into the record and break it down into various parts to illustrate the full story and why and how forced starvation dehydration happens and who and what this bill needs to protect people from.
Current starvation/dehydration case:
Haleigh Poutre, hospitalized on Sept. 11, 2005, with a damaged brain stem due to blows from a baseball bat inflicted by her adoptive mother and stepfather, was ironically saved by a court challenge from this same stepfather, who would have faced a murder charge had she been disconnected from life support. This particular beating came after 16 abuse/neglect reports were filed at the Department of Social Services. Rather than protecting what remained of her precious life, the Massachusetts Department of Social Services mobilized to remove Haleigh's feeding tube and respirator, and sued to win approval from the State Supreme Court.
The court-appointed guardian, Harry Spence, who then also recommended removal of her respirator and feeding tube care, without ever having even visited her and based on a doctors assessment, which wrongly characterized her condition as "virtually brain dead" or as 'permanent vegetative state." He was convinced that she had no hope of recovery. The court approved the killing. The little girl who had already suffered so much was then stripped by the Commonwealth of Massachusetts of even the chance to fight to stay alive and with less than three weeks having passed, was to be put to death by forced starvation dehydration.
Luckily , before pulling the plug, Spence decided to visit Haleigh, and was horrified when the little girl handed him a yellow block when asked to by a social worker. Haleigh Poutre had showed awareness of life and the ability to follow simple requests. This beautiful little girl would have been starved/dehydrated to death if Spence had not visited the young girl doctors had already written off. Spence called off the dehydration as Haleigh fought for her life. She is today in a rehabilitation facility able to eat "scrambled eggs and cream of wheat."
No one ever expected to have to protect children from such atrocious behavior and yet that is the reality. Gov. Mitt Romney created a commission in January to investigate the state's handling of Haleighs case.
Today, the commission released its results. Here are summaries:
Forbes/AP: An alarming string of mistakes by state agencies and medical professionals contributed to the poor care given to a 12-year-old girl before and after a beating that left her severely brain-damaged, a panel appointed by the governor reported Tuesday.
Boston.com: The panel delivered a list of 15 recommendations the governor said his administration would implement. Among them: requiring DSS to obtain a second opinion and consult ethics panels when considering removing a child from life support; establishing a system to identify high-risk cases; urging the Legislature to extend the period for investigating abuse reports from 10 to 20 days; making sure pediatric hospitals have child abuse teams on staff.
Boston Herald: The panels recommendations are so very basic to the welfare of the children who come under the DSS umbrella that it is horrifying they have never been in place, yet alone even considered, before. DSS should place on retainer panels of medical professionals in the areas of child abuse and psychiatry, including specific expertise in post-traumatic stress disorder, the report insists.
Why does starvation/dehydration happen everywhere and all the time? Alot has to do with the state of health care in our country and the skyrocketing costs of care for people but especially people with disabilities. There will be increasing pressure mounted on this vulnerable class of people specifically because of the bioethics movement in this country.
How did it come to this?
I cite Wesley J. Smith, advocate, lawyer, and author, "The simple answer is that tube-supplied food and water often called "artificial nutrition and hydration" (ANH) has been defined in law and in medical ethics as an ordinary medical treatment. This means that it can be refused or withdrawn just like, say, antibiotics, kidney dialysis, chemotherapy, surgery, blood pressure medicine, or any other form of medical care. Indeed, removing ANH has come to be seen widely in medicine and bioethics as an "ethical" way to end the lives of cognitively disabled "biologically tenacious" patients (as one prominent bioethicist once described disabled people like Terri Schiavo and Haleigh Poutre), without resorting to active euthanasia... It wasn't always so. It used to be thought of as unthinkable to remove a feeding tube. Then, as bioethicists and others among the medical intelligentsia began to worry about the cost of caring for dependent people and the growing number of our elderly and as personal autonomy increasingly became a driving force in medical ethics some looked for a way to shorten the lives of the most marginal people without violating the law or radically distorting traditional medical values. Removing tubes providing food and fluids was seen as the answer. After all, it was argued, use of a feeding tube requires a relatively minor medical procedure. Moreover, the nutrition provided the patient is not steak and potatoes, but a liquid formula prepared under medical auspices so as to ease digestion. There can also be complications such as diarrhea and infection."
"Having reached consensus on the matter, the bioethics movement mounted a deliberate and energetic campaign during the 1980s to change the classification of ANH from humane care, which can't be withdrawn, to medical treatment, which can. The first people targeted for potential dehydration were the persistently unconscious or elderly with pronounced morbidity. Thus, bioethics pioneer Daniel Callahan wrote in the October 1983. Hastings Center Report, "Given the increasingly large pool of superannuated, chronically ill, physically marginalized elderly it [a denial of ANH] could well become the non treatment of choice."
"In March 1986, the American Medical Association Council on Ethical and Judicial Affairs, responsible for deliberating upon and issuing ethics opinions for the AMA, legitimized dehydration when it issued the following statement: Although a physician "should never intentionally cause death," it was ethical to terminate life-support treatment, even if: ...death is not imminent but a patient's coma is beyond doubt irreversible and there are adequate safeguards to confirm the accuracy of the diagnosis and with the concurrence of those who have responsibility for the care of the patient. . . . Life-prolonging medical treatment includes medication and artificially or technologically supplied respiration, nutrition and hydration. It didn't take long for the American Medical Association to broaden the categories of dehydratable people. Thus, in 1994, a brief eight years after its first ethics opinion classifying tube feeding as medical treatment that could be withdrawn only when the patient was "beyond doubt" permanently unconscious, the AMA proclaimed it "not unethical" to withdraw ANH "even if the patient is not terminally ill or permanently unconscious." There it was: Food and fluids provided by a feeding tube were officially deemed a medical treatment by the nation's foremost medical association, meaning that withdrawing them was deemed the same as turning off a respirator or stopping kidney dialysis."
I. My Experience with Terri Schiavo and Ora Mae Magouirk
I flew to Tampa to join other Not Dead Yet members for an emergency action in support of Terri's right to life and the Schindler family's right to care for her. It was Easter Sunday, 8 of us had left our wheelchairs and laid on the ground blocking off one of the entrance/exits outside of Woodside Hospice as the various news media organizations swarmed around us jockeying for position to lock in best angle to deliver our story. For a time, we were the latest breaking news for audiences around the world, and for moments they would listen us sharing testimonials, and why it was that we supported Terri right to life and the Schindler's right to care for her.
I told the crowd that "If any man or woman anywhere in the United States had starved or dehydrated any animal in this way, that there would be huge public outrage and the perpetrators locked up for cruel and unusual punishment. We protect even child molesters, murderers, and rapists from this kind of treatment." I chastised the corporate media for not looking into, why in the first place Terri was in the condition she was in; and only covering the angle that Terri did not want to live in a vegetative state, that it was her choice to be killed this way. Why don't they question the fact that Michael changed his story about the way he found Terri or that when emergency workers came in response to the 9-11 call, they wanted to call the police because it looked like attempted homicide, or that a 1991 bone scan performed by Dr. W. Campbell Walker showed a history of trauma, and listed apparent injuries to the ribs, thoracic vertebrae, both sacroiliac joints, both ankles and both knees. If they looked at all into it, they would find many reasons for Michael to not be Terri's guardian and many reasons for Terri to be cared for by the family that loves her.
While outside Woodside hospice, we as Not Dead Yet reminded journalists of the constitutional right to equal citizenship - We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness. We did interviews with CNN, MSNBC, The New York times, People magazine, and all of the local affiliates from Florida including broadcast and print news. Numerous unimaginable failures on the part of judicial and law enforcement agencies was leading to the murder of Terri Schindler Schiavo. When I returned home it was the 12th day that Terri had been deprived of food and water. Knowing she could not last much longer and wanting passionately to do something about it, I began to review all the details of the case, hoping that I could find something to aide her. That article you can find here.
When I returned from Florida, I received urgent request to look into another case of forced dehydration/starvation happening right here in LaGrange, GA. Terri's death affected me greatly and being a writer/advocate, I resolved to insure that this does not happen in my own state of Georgia. Ora Mae Magouirk was neither terminally ill, comatose nor in a "vegetative state," when Hospice-LaGrange accepted her as a patient upon the request of her granddaughter, Beth Gaddy, 36, an elementary school teacher. Magouirk's had been resting comfortably in ICU at LaGrange Hospital for an aortic dissection. Her aortic problem had been stabilized and her life was not at risk. Magouirk had an active 'living will' which stated that fluids and nourishment were to be withheld only if she were either comatose or "vegetative," and she was neither. Like Terri Schiavo she was not terminally ill and should never even have been admitted to a hospice as being terminally ill is a general requirement for admission to a hospice.
Magouirk had lived alone in LaGrange, and relied on Beth Gaddy, to bring her food and do some errands. Beth must have been tired of doing things for her grandmother because she had Magouirk transferred to Hospice-LaGrange, where Gaddy informed staff that she did not want her grandmother fed or given water. Hospice-LaGrange then began denying Magouirk normal nourishment via a feeding tube through her nose and fluids via an IV. She had been kept sedated with morphine and ativan, a powerful tranquilizer so that she did not even understand what was happening.. The dehydration had been done in defiance of Magouirk's specific wishes written in a "living will," and against Georgia law that gave power of attorney to her closest living next-of-kin, two siblings and a nephew: A. Byron McLeod, 64, of Anniston, Ga.; Ruth Mullinax, 74, of Birmingham, Ala.; and Ruth Mullinax's son, Ken Mullinax.
Hospice-LaGrange did not even check into whether Gaddy truly had power of attorney over her grandmother. When they did finally check into it after the starvation/dehydration had began, they found that Gaddy did not hold power of attorney, in fact Gaddy had only a financial power of attorney, not a medical power of attorney. Magouirk had been denied nourishment and fluids for nearly two weeks, and had barely clung to life when WorldNetDaily broke the story and advocates in Georgia were contacted to get involved.
Gaddy was quoted saying, "Grandmama is old and I think it is time she went home to Jesus," Gaddy told Magouirk's brother and nephew, McLeod and Ken Mullinax. "She has glaucoma and now this heart problem, and who would want to live with disabilities like these?" LaGrange Hospital had failed to exercise due diligence in closely examining the power of attorney Beth Gaddy said she had, as well as exercising the provisions of Magouirk's living will, leading to the near starvation/dehydration of Magouirk. Disability advocates fearing another Terri Schiavo, postured for a battle, calling every level of government from the Ombudsman to Governor, and everybody else in between. We were able to mount enough pressure on the hospice and Gaddy, that she finally began negotiating with Magouirk's closest relatives from Alabama.
I interviewed Judge Boyd of the Probate Court in LaGrange and found out that Gaddy and the Mullinax's had met and agreed to give Gaddy power of attorney with the explicit determination that three doctors be allowed to evaluate Magouirk and that the family would then follow the advice of the doctors no matter what advice it may be. It was then that Magouirk was flown to the University of Alabama-Birmingham were her food and hydration were re administered, following doctors determination that the aortic dissection was healing fine and that her life was in no imminent danger. Advocates here rallied in support of Magouirk and we were able to save her life, supporting a part of her family that cared enough about her to preserve her dignity until God wanted to take her. She was able to enjoy a chicken sandwich, apple pie, and ice cream before her passing and I was glad for it. However, I wanted to do something more to protect Georgians with disabilities from ever having to go through a situation where the end result could be forced dehydration/starvation.
Ron Panzer said of the Magouirk case, "This is not at all unusual. This is happening in hospices all over the country," he said. "Patients who are not dying - are not terminal - are admitted [to hospice] and the hospice will say they are terminally ill even if they're not. There are thousands of cases like this. Patients are given morphine and ativan to sedate them. If feeding is withheld, they die within 10 days to two weeks. It's really just a form of euthanasia."
Another little known secret about forced starvation/dehydration is that as
in the case of Nancy Cruzan, Terri Schiavo, and many others, people are placed
on feeding tubes out of convenience for nursing home staff and not because they
cannot swallow food. Others like Haleigh Poutre and myself, only need feeding
tubes to stem the tide of emergency situations such as coma or not being able
to hold down food.
II. My Personal Struggle to Access Community Life
I myself am a c-5 quadriplegic that was dependent on a feeding tube for over a month a half, due to an inability to keep food down when initially injured. I wrote part of this testimony in an article entitled, "Mad as hell -- and fighting for our lives." The year was 1995. I was scared out of my wits about the future. I had no idea what life would be like for a C-5 quadriplegic. I could do very little in the way of caring for myself. I remember waking up day after day at the Shepherd Spinal Injury Center here in Atlanta, recovering from a crash when the van I was in lost its brakes on a California mountain road. Dreams were my only reprieve at the time, ghosts of my former life.
No one ever envisions life leading to this. When I was released to my parents, none of us knew what to expect. Their house was not the least bit accessible. I had a hospital bed set up in the living room because the wheelchair I used could not fit through the door to my old bedroom. I would have mired myself in pity had my presence at home been that of a quiet individual suffering. But it wasn't. Watching my aging parents' relationship self-destruct over dealing with my disability made me force myself to do something.
I found out about and applied for Options Cottage, a 6-month-long independent
living program at Warm Springs, Georgia. It had been started when Franklin Delano
Roosevelt was president; he spent time there. It was there that I finished my
second book "When the Evening Dies..." In the process, I found myself
again. Determined not to burden my parents further, I worked with Georgia Vocational
Rehabilitation to find a way to a return to college. Vocational rehab would
give me funds for 3 1/2 hours of assistance a day. Add that to the two hours
of help a day I was getting from the state's Community Care Service Program,
and I had my getting out of bed and getting back into bed covered. The in-between
would be spent at school and working for AmeriCorps, which would also help fund
I was able to manage living in the community by pooling resources with another quadriplegic; we were both going to Mercer University. Together we were able to afford a 3-bedroom house in the ghetto part of Macon, Georgia, where there were assured signs of gang activity and random gunshots throughout the night. We'd both been robbed and held up at gunpoint before we finally, after a year and a half, got on Georgia's Medicaid waiver program, which finally got us the independence we needed.
We were lucky enough to have negotiated life while on a waiting list to receive services through the Independent Care Waiver. Having survived those initial years of minimal care and ultimate struggle, I can speak from my own experience of coming up through the system with quadriplegia that the lack of state support to enable one to live independently is the most onerous burden the government can place on individuals who already have an incredible amount to deal with.
III. Ideal Protections and Supports
In an ideal situation, when a person becomes injured, someone familiar with the system would visit them, in the hospital, to tell them -- and their family members -- about all the programs available to help them and their families to take control of their lives again, without that unnecessary struggle the government imposes through its "institutional bias."
We are far yet from an ideal situation. Nationally, 85 percent of the long-term care Medicaid budget goes to warehousing 2.5 million people in nursing homes and other institutions. Given a choice, most of them would love to live in their own homes, part of their families and communities.. Nobody acquiring a disability wants to live in a nursing home for the next 30 or so years. That one fact has been the reason many people with high-level disabilities seek help in ending their lives. However, I would wager that, had the system been set up to immediately help them deal with the initial trauma and then through different programs restore them to inclusion and independence, showing them disability is a natural part of living life sometimes; the thought of suicide would have never been more than a passing phase.
IV. Feeding Tubes Are A Natural Part of the Healing Process and Integral to Emergency Care
The issue of whether food and water can be considered medical treatment, whether through a feeding tube or by mouth is essential to the disability community. We will never consider starvation and dehydration an acceptable means of ending a person's life. We do not allow our animals to be treated this way, protecting them from cruel and unusual punishment and we do not even allow the worst criminals in our society to be treated in such a way as they have protection of Habeus Corpus.
We can not allow the medical community to make decisions which adversely affect people's lives, giving whimsical power of attorney to anyone that sides with their so called professional opinion. Here in Georgia, not even a week after the death of Terri Schindler Schiavo, we have an elderly, 81 year old woman named Mae Magouirk who is not terminal in any way, being sent from hospital room to hospice and denied food an water, even though she has expressly intended through her living will to not be denied sustenance unless she is in a coma or a persistent vegetative state, which she is not.
As a national disability rights group, we fear the slippery slope of no return, where even living wills are ignored as in this case. With the passing of Terri, Pandora's box has been let loose and the diagnosis of willful starvation and dehydration indoctrinated as acceptable for our community. This has to stop. Starving and dehydrating people can never be thought of as an acceptable way of allowing people to transition into death. It is cruel, inhumane, and a violation of the civil rights guaranteed by our constitution and the Declaration of Independence.
We as people with disabilities are not sub-par humans to be willfully destroyed at the whims of a medical professional who has it in their mind that we are not worthy of the lives that we live. We can not allow society to continue devaluing us in a way that makes it okay to render such a torturous, backward, and barbaric death sentence, especially when meant out of compassion or for our own good. Many times people are equipped with feeding tubes even though they may not need them, as a convenience mechanism for the nursing home or hospice that they stay at. With feeding tubes unjustly being considered medical treatment, the cycle of equipping people with feeding tubes and then, later denying them sustenance, can easily get out of hand, as it already has. We must find a better way to allow people to make appropriate choices for themselves in end of life decisions, but never, never should starvation and dehydration be allowed as an acceptable means to this end. As Not Dead Yet, we will continue this fight and battle this evil wherever it takes us..
Having a feeding tube is a natural part of the recovery process especially in high level quadriplegia. For those having newly acquired disabilities, the thought of denying themselves emergency care to avoid life with a disability is in this atmosphere of devaluation as portrayed by "Million Dollar Baby" a very real threat especially when taking in to account that most people consider a 'living will' a viable advanced directive when the 'living will' instructs a physician to withhold or withdraw medical treatment from its signer if he or she is in a terminal condition and is unable to make decisions about medical treatment. A 'Living Will' takes rights and control from its signer and gives decision-making authority to a physician, who then is given complete immunity from civil or criminal liability for his or her action or inactions. The 'Living Will' is a document created and promoted by right-to-die groups for the express purpose of leading America down the slippery slope to publicly accepted euthanasia. Here in lies the danger of people being lead by a false advanced directive down the road where they very well may be denied emergency care as a result of their signing a 'living will.' People using a 'living will' to promote end of life decisions are the population of people who will be exposed to the nightmare scenario of being forcefully starved dehydrated. Besides a report by the Robert Powell Center for Medical Ethics of the National Right to Life Committee, April 15, 2005, released just two weeks after the murder of Terri proves that starvation/dehydration is a regular form of treatment for those whose lives are considered not worth living. When asked, WILL YOUR ADVANCE DIRECTIVE BE FOLLOWED? The Report concludes that, "The public overwhelmingly believes patient and family choices for life-preserving measures should be respected, even when health care providers disapprove. However, health care providers are increasingly denying life-preserving measures in contravention of patient and family directives choosing them. Their denial of care as 'futile' is often based on 'quality of life' rather than physiological grounds and that most state laws fail to protect patients and families who want food, fluids, or life support when health care providers deny it."
These are the people that need to be protected for most will not do the research to find out that there are better alternatives to the 'living will' that truly does protect one from forceful starvation dehydration. 'The Will to Live' and the 'Durable Power of Attorney for Health Care Decisions' are much better options which protect individuals and families from the pressure of doctors, hospital, and hospice ethics boards enforcing euthanasia tactics.
The "Durable Power of Attorney for Health Care" is a document in which you can delegate to a trusted friend or family member the power to become your agent for any health care decisions you are unable to make. In the DPAHC one can specify more clearly his or her wishes toward a pro-life position. Your trusted friend or family member who is familiar with your values and wishes would have authority to make health care decisions on your behalf. The DPAHC takes the decisions away from the "establishment" and moves it towards "home." To the medical caregivers, the DPAHC essentially says: "Here is a person upon whom I have often been dependent for love and care in the past. Now, when I can no longer participate in decisions about my medical care, I am content to continue to be dependent upon his (her) love and care. Talk with him about what is best for me."
THE WILL TO LIVE protects your own life and the lives of your family members when you cannot speak for yourselves. It names someone you trust to safeguard your life when you cannot speak for yourself as your "health care agent", names backup agents if your first choice can't serve, describes the treatment you do and do not want to guide your health care agent and physicians, protects your family and health care agent from pressure from health care providers and others by allowing them to prove what you really did want, and it relieves agonizing end-of-life decision making from loved ones making your wishes clear. I bring this to your attention now so that you yourself realize that the 'living will' is the reason why people are exposed to forced starvation dehydration. Please read this article I wrote about the available advanced directives to truly understand the intricacies behind this issue. I would ask you to please peruse this article to understand how hospitals and hospices are purposely preying on people with disabilities as a way of acquiring organs for sale and transplant. This also ties in with this issue as organ procurement is one of the reasons hospitals, hospices are starving dehydrating people.
I have been warning people with disabilities for years about the dangers of being an organ donor. Organ donors do not get quality end-of-life care because they are more valuable to hospitals that stand to make more off harvesting someone's donated organs than they would from saving organ donor's lives. It is of utmost importance the legislature learn about what is happening in mainstream hospitals that not only embrace personhood theory but also covet the organs of their patients. Ron Panzer, advocate with the Hospice Patients Alliance writes, "We sometimes (and increasingly) have newly injured patients being declared "brain dead" at the hospital without the appropriate tests ever being completed. We have hospital transplant teams being flown in ready to "harvest" organs from patients who have never been properly diagnosed, whose families are not always informed of all the treatment options, and we have doctors ready to "spin" the patient's condition into a "hopeless" category so the family agrees to "allow the patient's death to have some meaning" through organ donation, even though in cases where the family refuses to accept the "final determination of the all-knowing docs," the patient recovers! The glaring reality is that when the docs are wrong, dead wrong, the patient is killed by the harvesting of the organs, not because of the injuries sustained. "
V. Creating the Support System to Protect Individuals and Families
I'd like to publicly state that starvation dehydration is not a painless death even when administering pain relief, it is torture. It is important to understand that people are afraid to live with disability precisely because Hollywood devalues our lives and governments have only established institutions as long term care placement throughout the country. The reason people would even remotely be okay with ending their lives at all costs, has a lot to do with the kind of care people receive in these government run Medicaid facilities. Also among bioethics and bioethicists, there is a growing movement to expand the withdrawal of food and hydration from people as administered by a feeding tube, to include populations such as dementia and Alzheimer's that do not need feeding tubes. They are trying to continually expand the populations of people targeted for starvation dehydration whether through a feeding tube or not.
VI. How Neglect Leads People to Desire Death:
The kind of care received in some places has resulted in fines for abuse -- a case of the state fining the same nursing homes it rewards for keeping the cost of care down to a minimal per individual. I documented these abuses years ago in an article entitled, "State's frailest at risk in cost-driven system - Nursing homes get bonus, despite deficiencies" and in "Right To Dignified Life" available at my website www.endeavorfreedom.org. In these series of articles I cover the story of Carol Carr, who watched her husband and three sons suffer from Huntington's disease -- but suffer even more from the "care" they received while committed to Sunbridge Care and Rehabilitation Center in Griffin, Georgia.
Carol Carr was mentally exhausted from years of watching the nursing home neglect her loved ones. James Scott said his mother "shouldn't have had to go down there every day, changing them (Michael and Andy) and doing the work for the nursing home. It seemed like every time one of us went down there, one of them was just sitting there in pee. "We kept having problems with the nursing home, getting them to change their bed linens. We had a big fight with them , trying to get them to help. They left them in there soaking wet," he said. "We went down there Friday, and it was the same thing."
Family members knew it was just a matter of time before Carol Carr cracked from pressure. Seeing no way out, fed up and in desperate straits, Carol went into the nursing home room where her two sons were kept in filth and beset by painful bedsores, and shot them in the face and the neck. She then walked to the lobby where she sat down on a sofa awaiting arrest.
One year before the fatal shooting, Sunbridge had been cited as one of Georgia's
most chronic violators of state nursing home staffing requirements. They refused
to hire enough staff -- to keep costs down. In 2000, inspectors found that the
facility placed residents in "immediate jeopardy" by, among other
things, failing to properly treat bedsores. In some cases, the staff was not
even aware residents suffered from the sores, inspectors said.
The federal government had imposed more than $100,000 in fines against the SunBridge-Griffin facility as a result of poor care, according to records from the Centers for Medicare and Medicaid Services. Only 18 staff members were on duty at the 140-bed facility when the shooting occurred. The kind of care received in nursing homes has prompted many quadriplegics -- like Larry McAfee, also from Georgia -- to fight for the right to die rather than live within the constraints of a nursing home environment. As long as the support structure is not in place to truly support families and individuals with disabilities, there will be a continual call by people to end their lives prematurely trying to avoid life in a disabled body.
VII. How Devaluation Leads to Desire to Terminate Life with Disability
Another case from Georgia:
Back in 1990, Larry McAfee had appealed to courts for his right to die. He was a vent dependent quadriplegic that was forced to leave his home in Georgia for a nursing home in Alabama, because Georgia nursing homes did and do not admit ventilator dependent quadriplegics into their care. McAfee, who had been disheartened by his situation in a nursing home and distance away from family members, chose rather to die than live in a situation he felt was worse than death. Right to die activists such as the Hemlock Society tried to make McAfee a posterchild for physician assisted suicide while independent living advocates, who believed that persons like McAfee would reconsider should their quality of life improve, lined up on the other. His plight garnered wide attention as battle lines were drawn and the war was begun.
McAfee told Joe Shapiro of U.S. News and World Report, that the worst thing about his disability was that people treated him as though he was "invisible." He told ABC's Nightline: "If you're a citizen or resident of Georgia and you become ventilator-dependent, you'd better be prepared to become an outcast unwanted by the state." His mother said that he was "thrown around like a bag of rotten potatoes that nobody even wants." "You're looked upon as a second-rate citizen," McAfee told Shapiro. "People say, 'You're using my taxes. You don't deserve to be here. You should hurry up and leave.'" "It gets to the point," he said, "where you realize that this is your life, . . . and in my case, it's not worth pursuing."
Four Atlanta disability rights groups, led by Mark Johnson and Eleanor Smith, issued a press statement condemning Georgia's Attorney General and others who supported McAfee's petition for assisted suicide. They declared themselves "outraged that our state for years left Larry McAfee without enough support for independent living and now steps in willingly to help with his suicide....The state creates an unbearable quality of life and then steps in and says disabled people should be assisted to die because their quality of life is so poor." Dr. Gregor Wolbring, a disabled bioethicist from Canada declared "There is suicide prevention for the able-bodied but assisted suicide for the disabled. Suicide prevention for you but suicide enhancement for us Society wants the disabled community to have access to a dignified death when we want access to a dignified life."
The right to die crowd soon found defeat and were quickly dejected, when it was found by advocates that McAfee did not in truth want to die, but opted to die rather than being forced to stay in a nursing home situation, with no control or choice to make about decisions concerning his life. The right to die people retreated as advocates worked to improve McAfees options in regards to his living situation, which improved considerably once he was placed in a group setting with a couple of other people with disabilities, they could manage by sharing rent and bills. The right to quality in life had been found to be the true determining factor to his case. Fortunately, Larry McAfee changed his mind about dying because people from United Cerebral Palsy offered him creative possibilities to regain control of his life and to work in computer engineering. In the end, he testified before the Georgia legislature, calling upon you to fund independent living.
In 1992, Jenny Langley, who had the ill-fated luck of becoming a quadriplegic for a second time resulting in her dependence on a ventilator to regulate breathing, became the model for what is now the Independent Care Waiver Program when she proved to the state of Georgia that she could save the government money by managing her care in the community where it was more cost efficient than staying in a hospital where her care was costing the state $7,000 dollars a week. With the support of Shepherd Spinal Center, Jenny proved over the course of a year that she could live at home on $125 a day. Her success encouraged the Georgia Legislature at that time to commit $105,000 in state and federal funds to a three-month pilot program for six or seven disabled people.
Jenny became the first recipient for the ICWP here in the state of Georgia. Those of us now on the Waiver owe her for the legacy of community based supports for people with severe disabilities. She proved that with state support, she not only could live independently, but she could live well independently. Thus with her example, Georgias Independent Care Waiver program was born and modeled after her success. Her ability to stay in the community while at the same time saving the state money encouraged the state to expand the program and in that same year the federal Health Care Financing Administration, which oversees Medicaid, approved a $1.2 million budget for fiscal year 1993 - a sum that will allow up to 25 disabled people $50 to $250 a day to pay for home care. Since that time the waiver has grown to support many individuals, who otherwise would be forced into nursing homes where the quality of life is so bad that individuals like McAfee would petition the courts for the right to die rather than live within them.
VIII. Promote Disability Integrity
If people and individuals are supported in their efforts to recover, I can assure you that many, many of these individuals will become the advocate that I have, promoting inclusion and access to equal rights. I can assure you many will become productive members of society willing to contribute back to the governments and programs which supported our efforts at returning a sense of normality to life. To truly protect individuals from the scenario of forced starvation dehydration, the state must support the various Centers for Independent Living so that we can promote the resources which will educate individuals to which advance directive to choose which best protects people as well as many other important issues and how they all tie together. Also please continue to Unlock the Waiting Lists, it is essential for so many. It is absolutely imperative to protecting people up front from ever being in institutional situations where there lives may be at risk. Those that have lost their community and family supports, are the ones most at risk in institutions that only provide quality care to those whose families still visit and check regularly on their loved ones well-being. "In most states, exhibiting consciousness is not a defense against dehydration for profoundly impaired patients. Indeed, cognitively disabled people who are conscious are commonly dehydrated throughout the country. So long as no family member objects, the practice is deemed medically routine."
IX. Support Money Follows the Person and Unlock the Waiting Lists
The ICWP has proven to be a godsend for individuals and families of individuals like myself, who have grown to love the independence and quality of life that it enables. Many of us have utilized the gift it has brought to our lives to work for and advocate for the independence of others and the continual obligation of our nation and states to break the cycle of institutional and nursing home bias established so long ago by a culture that knew no better than to hide away people with severe disabilities, segregating us from opportunities in mainstream society. It is the legacy we are left with today even after the 1999 United States Supreme Court decision against Tommy Olmstead and Georgia, favoring people with disabilities and our right to life in the most integrated setting. We had hoped from that moment forward that things would continually get better for people with disabilities in our nation. However as we were soon to see just because something passes at a federal level does not always mean that States are quick to accept the decision of the federal court and definitely not always open to changing state policy, as 2.2 million Americans continue to suffer daily injustice in nursing homes across our nation.
While we applaud the House and the Senate for wanting to protect our lives. We are honored that you can appreciate us for the splendid beings we know we are. We absolutely appreciate the congressional support that you have shown to our causes. When the ICWP started it, was to address the needs of people with really high level disabilities dependent upon the greatest amount of care. The basis of the program has been to give people who had no where else to go a chance at life outside a hospital room or institution. For those of us blessed to have the waiver in our lives, I can assure you it has saved us immeasurable amounts of suffering and possible euthanasia as the institutions, nursing homes, hospital, and hospices are all administering forced starvation/dehydration. People must be supported in the community, and in our own homes where we are the safe from medical interventions which result in death, among loved ones where we want to be anyway.
Again we thank you for all that you have done. Senator Schaefer, we are immensely indebted to you for moving on this issue. I appreciate your kind friendship and leadership on behalf of Georgians. Thank you for seeking to protect our lives from the nightmare of forced starvation/dehydration. We commend the whole Congress for your quick action.
If there is anything that I can do to further testify on this issue, please feel free to contact me.