ADAPT – and NDY – Celebrate Community First Choice Option in Health Care

ADAPT, health care reform, Our News & Commentary Blog

Joe Biden is right – it is a big f___ deal.

First, here’s what ADAPT, a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom, has to say about the health reform bill passed by the House and signed by President Obama: 

News Release

For more information, contact:
Mike Oxford, (785) 224-3865
Bob Kafka, (512) 431-4085
http://www.adapt.org

ADAPT Celebrates Community First Choice Option in Health Care Reform

ADAPT, the national cross-disability grassroots group, today celebrates the inclusion of the Community First Choice (CFC) Option and other long term care-related provisions in the health care reform package passed by the House on Sunday, March 21. These provisions bring people with disabilities across America one step closer to home and community-base supports and ending the institutional bias in Medicaid. Twenty years ago, with the passage of the Americans with Disabilities Act, people with disabilities realized the beginning of a civil rights dream of access to all levels of society. Today, ADAPT continues to fight to protect that dream, re-committing to the enforcement of the ADA-based Olmstead Supreme court case, which holds that no person can be forced to remain institutionalized against their will.

The Patient Protection and Affordable Care Act and its companion legislation, the Reconciliation Act of 2010, together include several items related to home and community based services. For example, starting in October of 2011, the CFC Option will give states the choice of providing home and community based services to Medicaid recipients instead of simply forcing them into nursing homes. The federal Money Follows the Person program will be extended until 2016. Provisions of the CLASS Act are also included in the new legislation. States will have increased federal funding matching incentives to fund community services. Yet while passage of this legislation is a social landmark, much remains to be done.

Read the rest of the press release here.

We’re celebrating here at NDY as well. Assisted suicide, active euthanasia and withdrawal of treatment aren’t the only ways to cause the premature deaths of people with disabilities.  Underemployed or unemployed people – or those with “pre-existing” conditions have been left to fend for themselves in a profit-driven health care system in this country.  People who have to rely on emergency rooms for treatment don’t really get the same care for life-threatening conditions that can be gained through regular medical visits.  And, of course, those of us who are lucky enough to be insured get to “enjoy” premium increases since the cost of the emergency room treatments get passed on to us – and our insurers.

There are a lot of shrill voices out there – Tea Partiers being the loudest right now.  From “death panels” to “government takeover” they are talking about expansion of health coverage as though it’s the end of civilization itself.  And yet, I get the feeling from the Tea Party crowd that the only “solution” they have to offer for the health care crisis is to keep the current system in place – in which more people get pushed out of the system.  And that means more people die early and unpleasantly.  We like to call that “backdoor euthanasia.”

So, yeah, for all its faults, we are celebrating this long-overdue first step into ensuring health care for all US citizens.  It’s about bloody time.  And it’s a big f______ deal.  –Stephen Drake

Ann Neumann and Vancouver Sun: Dissing Disability Activists’ Opposition to Legalized Euthanasia

Ann Neumann, assisted suicide, Canada, euthanasia, media coverage, Our News & Commentary Blog, reality check, tracy latimer

Ann Neumann, writing on the Otherspoon blog, has stated in the past that she’s inclined to shy away from direct criticism of disability rights groups like NDY in the “right to die” debate, seeing it as “a trap.”

Neumann found a way around the “trap” last week by quoting someone else’s work.  Specifically, she quoted a “hit and miss” attempt at analysis of the impact of the disability rights movement in Canada published in the Vancouver Sun.

Here’s the relevant portion of the article in regard to assisted suicide and euthanasia, which Neumann also shares on her blog:

The battle for disabled rights has had other unpredicted twists and turns.

One of them is over the so-called “right to die.” As advocates for the disabled have continued battling for recognition, they have clashed with people who want laws in Canada and the U.S. permitting assisted suicide for those with severe disabilities and terminal conditions.

Even though polls show the majority of Canadians support regulated euthanasia, disability rights activists have strongly lobbied politicians to make sure no one, regardless of the severity of their disability, should be able to choose an assisted suicide.

In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical “slippery slope” that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.

In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.

American readers should take careful note of the specific wording.  The debate in Canada is not limited to advocacy of assisted suicide or euthanasia for the “terminally ill” alone.  As I’ll get to in a bit, it’s not even limited to those who ask to die.

All the more curious that she’d highlight this, since one of her criticisms in her previous post responding (sort of) to Not Dead Yet, contained this:

As to the provision of rights to one group infringing on the rights of another, that’s just bad thinking too. Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in.

Paranoia?  Certainly not in Canada.

See, the reporter at the Vancouver Sun didn’t do his homework.  The one single case that galvanized the disability community in Canada in regard to this issue was the murder of a disabled 12-year-old girl by her father, who claimed it was a “mercy killing” after failing to pass her death off as a natural one.  Robert Latimer, who gassed his daughter Tracy in the cab of his truck, had many defenders – including members of the “right to die” movement in Canada.

Ruth von Fuchs, current president of the Right to Die Society of Canada, had some pretty unambiguous  quotes during the trial of Robert Latimer:

Proponents of euthanasia say that, until proper legal and social supports are in place, many people, like Latimer, have to take the law into their own hands. “This law is being written unofficially in emergency rooms and intensive care wards every night,” says Ruth von Fuchs, a member of the Right to Die Society in Toronto. Von Fuchs views Tracy’s death as part of a “continuum” that begins with brain-damaged infants, some so severely handicapped that doctors quietly remove life support within hours of birth. It is unfortunate, she adds, that because mercy killing has been “criminalized,” Latimer felt he had to act alone, without the help of a social worker or medical expert. Von Fuchs, and other members of the euthanasia movement, is calling for a change in attitude to mercy killing. “In our society, we forbid people to give up,” she argues. “We say, ‘Never say die,’ but sometimes you have to stand back and realize that really is a cliché. We cannot fix everyone every time forever.”

You want a clearer statement from a leader in the Canadian “right to die” movement?  Here is an excerpt from a 1997 NY Times article quoting the late Marilyn Seguin, then the executive director of of the Canadian group Dying with Dignity:

Marilynne Seguin, executive director of Dying With Dignity, a Toronto-based group promoting freedom of choice for physician-assisted deaths, said that the Latimers had already lived under a sentence during the 12 years that Tracy was alive and that to add the 10-year punishment “is quite unconscionable.” (emphasis added.)

Going back to the original article, opposition of disability rights activists – and mistrust of the motives of euthanasia advocates – might seem less like an “overreaction” and more an appropriate reaction with more information.

The Vancouver Sun reporter failed to supply a full context for the nature of the real debate here – through laziness, sloppiness or reasons unknown.  Whether Neumann found this appealing due to true ignorance or a simple wish to use misinformation is anyone’s guess.  But even with the limited information available in the article, she certainly can’t accuse disability activists of conflating “terminal illness” with “disability.”  Disability is openly on the agenda of the euthanasia proponents in Canada.

It is here in the US as well.  The larger organizations just favor an incrementalist approach and are a little embarrassed by the recently publicized more radical activities of the Final Exit Network.  –Stephen Drake

Bad Cripple on Washington State Death Toll (blog recommendation)

analysis, assisted suicide, blog recommendations, Our News & Commentary Blog, Washington state, william peace

Earlier this month, Washington State released its report on the first 10 months of its brand-new assisted suicide law.  You can read a pretty typical press account at this NY Times link.

However, neither the Times nor most of the media gets at some of the troubling information that emerges from this report – limited as the information is.  The best analysis I’ve read so far is at Bad Cripple, the blog maintained by Bill Peace.

Here’s an excerpt from his analyis and comments from his blog essay “Assisted Suicide in Washington: Death Toll 36“:

Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.

Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.

  • Losing autonomy, 100%
  • Less able to engage in activities making life enjoyable, 91%
  • Loss of dignity, 82%
  • Losing control of bodily functions, 41%
  • Burden on family, friends/caregivers, 23%
  • Inadequate pain control or concerns about it, 25%
  • Financial implications of treatment, 2%

I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question?

Please go and read the rest of the blog entry here.  –Stephen Drake

Newsweek: Veterinarian Says We Should “Treat People Like Dogs”

health care reform, media coverage, Newsweek, Our News & Commentary Blog, pets, reality check, veterinarian

Out of all the newsweeklies on the market, Newsweek has published some of the most outrageous pieces regarding people with disabilities and euthanasia.  This week’s “My Turn” column by veterinarian Karen Oberthaler isn’t the worst thing they’ve published, but it immediately brought to mind one their “classic” pieces.

Oberthaler’s essay attempts to make a case that humans would be a lot better off if our health care was delivered in the same way that veterinary care is for household pets.  Oberthaler is not your average vet – she’s an oncologist who says “pet owners routinely rack up $10,000 bills” to pay for saving the lives of their pets.

Oberthaler obviously doesn’t practice veterinary medicine in my neighborhood.  I don’t think there are many people in my neighborhood with that much extra money on hand – and very fewer who would dip that far into savings in our middle-class corner of the city to save the life of a household pet.

But someone whose human clientele “routinely” pay large amounts of money to save and extend the lives of their pets might see the following as reasonable, I guess:

When facing the death of a loved one—human or animal—the real challenge is coming to grips with the reality of the situation. Since my approach draws me closer to families, it’s easier to suggest that the best course of treatment may be relieving pain rather than fighting a disease. Owners are less likely to fear that you’re giving up on their beloved pet if they trust you. When I’m asked about performing tests, and I know the results won’t change the outcome, I say so. If your golden retriever’s cancer is too far advanced for surgery, getting a biopsy may be a pricey—and superfluous—exercise.

No family wants to subject its already sick pet to uncomfortable tests or dump thousands of dollars into dead-end diagnostics. So why do we do that to our grandparents?

Oberthaler stops just short of the most obvious comparison in an essay advocating human health care should be more like the care for household vets and doesn’t mention euthanasia – but I’ll bet the majority of readers got there without her help, especially if they are long-time readers of Newsweek.

In 1992, the magazine published a “My Turn” column by Katie Letcher Lyle titled “A Gentle Way to Die.”

Lyle also thought we did better by pets than by some humans.  After first giving a tender account of having her cat euthanized, she moves on to give her view of what she obviously feels is a life not worth living.  “Henry” is a man with intellectual disabilities who has been abused and abandoned by the system for most of his life.  He’s in a group home now and she doesn’t see much joy or purpose in his life:

I know the arguments about the abuses of kindly death, and I know mental incompetents were the Nazis’ first victims. The money is certainly not the point; I believe strongly that one can judge any civilization by how decently it treats its sick, its elderly, its disabled. But money is a reality, and adding up all the institutional, medical and social services, Henry has already cost American taxpayers roughly $1.5 million. But my point is, what does life hold for Henry now? I’ll tell you: either a drugged hell of an existence behind bars; or, more probably, deinstitutionalization, street life, an agonizing death in a filthy alley. It happens to others, everywhere, every day.

I don’t like the conclusion I’m forced to. But is a gentle death for a human being always the worst answer? Laws can be implemented to prevent abuses. It seems patently untrue to me that any life is always preferable to no life. I wish, more than I can say, that there were some place on this earth where Henry could live happily and freely and be loved and understood. But since there isn’t, I find it disgraceful, as well as ironic, that we cannot bring ourselves to treat our fellow humans as humanely as we treat our pets.

The original article described Lyle as some sort of “advocate” for the “handicapped.”  I hope she’s no longer allowed anywhere near people with intellectual disabilities.

****

Getting back to the current “My Turn” essay, I suspect the vets in my neighborhood would tell Oberthaler that a lot of pets they euthanize could be cured, but owners don’t have the money for the treatment.  Others balk issues like amputation of a limb or the loss of vision in an animal – many owners see death of a pet as a better outcome than having to live with a disabled pet.

Some even have reasons that are harder to wrap my head around.  Just about a week ago, a story found its way into my newsfeed that raised a lot of eyebrows:

Dog euthanized to be buried with owner

March 5, 2010 — One man’s last request has animal lovers questioning his state of mind and motives. The Arkansas man asked that his dog be buried alongside him — a dog that was only 2-years-old and perfectly healthy. 

Fifty-four-year-old Donald Ellis was buried last week at Oakland Cemetary in Monticello, Arkansas. But not before he made an unusual request: that his 2-year-old Yorkie “Tom Tom” be buried alongside him.

Ellis’ sister Marilyn McDaniel told reporters the family wanted to fulfill her brother’s desire, so they took the Yorkie to the vet and had it euthanized.

According to McDaniel, Ellis said he wanted the dog to go with him because no one would love him like he did. 

BTW, the vet in the story hated putting the dog down, but was afraid that if he refused the dog would be killed in a way that wasn’t as humane as the death he could provide.

That’s the reality of health care for our pets.  We pay what we feel we can afford for the results that meet our satisfaction.  If it costs too much or we don’t like what the outcome would be, we choose a “merciful” death instead.  Not that we tell ourselves and our friends that’s how we make those decisions – like Mr. Ellis who made sure his dog didn’t outlive him – we tell everyone it’s all about love.  –Stephen Drake

Georgia: Grand Jury Indicts Four Members of Final Exit Network on Multiple Counts

assisted suicide, crime and punishment, final exit network, Our News & Commentary Blog

I missed this when the news hit yesterday, but things aren’t looking great for the members of the Final Exit Network (FEN).

Here’s the gist of the news, from the second paragraph of the story from the Atlanta Journal-Constitution:

An indictment returned Tuesday charges the Final Exit Network along with co-founder Thomas “Ted” Goodwin, 64, of Kennesaw and Punta Gorda, Fla.; Claire Blehr, 77, of Atlanta; and Dr. Lawrence Egbert, 82,  and Nicholas Alec Sheridan, 61, of Baltimore with violating Georgia’s RICO Act, assisting a suicide and tampering with evidence. The four are to be arraigned in Forsyth Superior Court on April 1.

More here about the investigation leading to the charges:

Once an investigation was opened, a GBI agent, posing as a Dawson County man dying of pancreatic cancer, applied for the Final Exit Network’s help.

According to the charges, Goodwin walked the undercover agent through the steps that would have killed him. Goodwin allegedly demonstrated how he would hold down the agent’s hands to prohibit him from removing the “exit bag.” That is when other agents came in and arrested Goodwin, according to the GBI.

As I suggested in the beginning of this entry, 2010 isn’t looking to be a great year for the FEN.   It’s even mentioned in the AJC article here:

In January, Wye Hale-Row pleaded guilty to assisting a Phoenix woman, who killed herself in 2007. Hale-Row was one of four Final Exit Network members indicted following the death of Jana Van Voorhis. The cases against the three other defendants are still pending.

Van Voorhis was found dead in her home on April 15, 2007 and an autopsy showed she died from helium asphyxiation. However, authorities say Van Voorhis was not terminally ill at the time and suffered from mental-health issues and depression.

This, of course, doesn’t tell the whole story.  As reported earlier on this blog, Hale-Rowe – a prominent activist in the Hemlock Society and general assisted suicide advocacy for decades – agreed to testify against the other FEN members in Arizona as part of her plea agreement.

I’m sure the FEN is putting on a good show of bravado right now.  But the plea agreement and promise to testify from Hale-Rowe alone should have them all pretty worried by now.  And then there’s the issue of their “training manual,” which may be entered into evidence into one or both trials.  I hear there’s some stuff in the manual that might not play real well with a jury.  –Stephen Drake