“Getting Away With Murder” – Australian Killers of Disabled People Get Sympathy from Public and Courts

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From Ramp-Up:

Media reports on homicides of people with disability, particularly those with intellectual disability, are frequently sugar-coated and euphamised. This only serves to diminish the value of those who have lost their lives, writes Craig Wallace and Samantha Connor.

Suicide is anything but painless. So we should share sympathy for the loved ones of the couple convicted of killing their son in 2001, who were found dead in their western Sydney home on the weekend.

The couple killed their son Matthew, who had a disability, days before his 29th birthday, yet avoided jail after they pleaded guilty to manslaughter. They were instead sentenced to five-year good behaviour bonds.

Despite this latest tragedy, it’s impossible to ignore the way the killing of people with disability continues to be minimised, sanitised and even excused by the media, the public, the judiciary and even closer to home in parts of our disability community.

Sure enough it was disappointing, but not exactly surprising, to see the usual green shoots of moral relativism in comments about the news on the weekend.

What wasn’t expected was for such views to emerge on a social media space that specifically works to break the silence about violence and abuse of people with disability.

“Who am I to judge?”; “There’s no wrongs or rights”; a “tragedy for everyone involved” were among the comments on the story.

Hang on – a tragedy for “everyone” involved?

Actually, it’s a tragedy for the person who was murdered. Period.

No wrongs or rights? Who are we to judge?

Sounds reasonable, doesn’t it? The death of three people is a tragedy by any measure and judging is a fraught undertaking – let the one who has never sinned throw the first stone.

But what if we apply that even handed tone to other murders?

Read the rest here.

This article from Australia is a sad reminder that the dismissive attitude of the public and courts toward the murders of people with disabilities isn’t limited to the United States, Canada, United Kingdom, or … is there any country that treats the life and deaths of disabled people with real seriousness?  I’d like to see that things might be getting better, but there’s evidence that they might be getting worse when it comes to outright murder – and I’ll try to wrestle an article out of my thoughts on that next week.

News From Gallup, But Pew Study is Better

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A new Gallup report is entitled “Seven in 10 Americans Back Euthanasia,” but that’s a misleading opening.

First, the question was:  “When a person has a disease that cannot be cured, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request it?”  According to the poll, 69% say “yes,” down from 75% in 2005.

Support drops to 58% when the Gallup question is:  “When a person has a disease that cannot be cured and is living in severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?”

So, as Gallup headlines it, “Diminished Majority Favors ‘Doctor-Assisted Suicide.’”

The word “suicide” is no doubt important, but there are some other issues raised by the wording of the questions.  Why does the non-suicide question mention the family’s request, while the suicide question leaves family out?  How many respondents are confused about the difference between the right to refuse unwanted life-sustaining medical treatment and assisted suicide?  How many say “yes” because they want their advance directives honored and their health care proxy’s directions followed?

And why does the suicide question add the condition that the person “is living in severe pain”?  Did Gallup ever ask this question without adding the pain factor and get a response lower than 58%?

Considering the sloppiness factor in the Gallup efforts on this issue, I’m inclined to turn to the Pew study for more accurate insights.  The Pew study, “Views on End-of-Life Medical Treatments“, covered a wider range of health care decisions issues, which allowed respondents to sort out the differences between refusal of treatment and assisted suicide, avoiding the confusion inherent in the Gallup style of questioning.

The Pew result:  only 47% support assisted suicide laws.  Not a diminished majority, not a majority at all.

John Kelly Letter Published Challenging Pro-Assisted Suicide Column in Times of Trenton

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In the aftermath of the New Jersey Health and Senior Services Committee hearing on assisted suicide, the public debate has continued in the press.  One example is George Amick’s column in favor of legalization.

Amick acknowledged that the opposition includes people with disabilities:

Groups representing Catholics, medical practitioners and people with disabilities were on hand to attack the measure as “assisted suicide” and “an open invitation to patient abuse” that lacks safeguards against the possibility that applicants are depressed or have been misdiagnosed or coerced. Opposition witnesses included individuals with sever disabilities, some in wheelchairs, who testified that they found their lives well worth living.

Amick also reported another interesting point for the disability community, specifically that the bill’s lead sponsor decided to change the name of the bill:

No adjustment is too minor for Burzichelli to consider.

For example, he asked the committee to change the bill’s title from “The Death With Dignity Act” — as Oregon, Washington and Vermont call their laws — to “The Aid in Dying for the Terminally Ill Act.”

“I don’t want to suggest that the only way to have a dignified death is to ingest a prescription,” he explained. “That certainly isn’t the case.”

Not to mention the fact that “aid in dying” and similarly vague terms poll so much better than “assisted suicide.”  Amick’s piece proceeds to carry the proponents’ party line about the bill’s supposed safeguards.

In response, John Kelly’s letter published this weekend sheds light and exposes the profound weaknesses of the bill’s safeguards:

Dangers of assisted suicide bill too many to overlook

George Amick’s column “Bill would allow terminally ill patients to die in humane, dignified manner” (June 9) ignores the many dangers of legalized assisted suicide.

Assisted suicide makes for a deadly mix with our profit-driven healthcare system. With a lethal prescription costing a mere few hundred dollars, assisted suicide will immediately become the cheapest “treatment. ” For example, Oregon Medicaid refused to cover prescribed chemotherapy for Barbara Wagner and Randy Stroup, while offering the cheaper assisted suicide. Such distorted medical decision-making is one reason disability rights groups across the country oppose assisted suicide. Connecticut, Massachusetts and New Hampshire listened to our objections and rejected bills this year.

Assisted suicide endangers people who experience depression. Oregonian Michael Freeland easily received a prescription despite a 43-year history of severe depression and suicide attempts. Freeland’s prescribing doctor later said that he didn’t think a psychological consultation was “necessary.”

If Assemblyman Burzichelli is open to adjustments, he should look to Connecticut, where the legislature listened to disability rights advocates and rejected assisted suicide, then got to work with advocates to craft a pilot program for medical orders for life-sustaining treatment (MOLST). This program, which will protect everyone’s right both to receive and decline medical treatment, passed the Connecticut House unanimously and is now state law.

— John Kelly

Boston

The writer grew up in Middletown Township and is now New England regional director for the national disability rights group Not Dead Yet.

Please support and promote his excellent letter.

Press Release: Disability Advocates From Not Dead Yet and New Jersey Disability Organizations Testify Against Assisted Suicide Bill Despite Short Notice of Committee Hearing

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[Editor’s Note:  The press release below is being distributed through PRWeb in pdf format and is available at http://www.prweb.com/releases/2014/06/prweb11917687.htm.  The PRWeb version also includes the actual testimonies as Word attachments.]

Last Friday was the first that disability advocates learned that a New Jersey assisted suicide bill that they oppose would be heard by the Assembly Health and Senior Services Committee on Thursday, June 5 at 10:00 a.m.

“We just learned of the hearing when it was posted at the end of last week,” said attorney Anne Studholme who testified against the bill last year on behalf of Not Dead Yet.  “I’m aware of at least one physician who wants to testify against the bill but can’t because he’s scheduled for eight hours of surgery starting in the morning.  Short notice doesn’t work for surgeons, and I really question the way this hearing was scheduled.”

Having seen the many witnesses at last year’s hearing, Studholme further noted, “Many organizations with members who are practicing doctors, lawyers, and advocates for disabled people, including people with disabilities that make logistics more time-consuming and difficult, oppose this bill.  As recently as last week, we were being told there would be no action on this bill until at least July, if then, and, more likely, in the fall.”

Studholme will testify on behalf of Not Dead Yet, as will John Kelly, the organization’s New England regional director who testified at hearings that resulted in the defeat of similar legislation in New Hampshire, Massachusetts and Connecticut earlier this year.  Kelly will testify by telephone hook up from Boston.

Kelly’s testimony will focus on abuses under the Oregon assisted suicide law.  “Only in the fantasy world of the proponents are all families… happily gathered around the peaceful and willing suicide,” Kelly plans to testify, referencing an estimated 175,000 cases of elder abuse in New Jersey annually.  “The Health and Senior Services Health Committee should not be recommending the introduction of poisonous drugs into abusive situations and then not even require an independent, disinterested witness be present at the dying.”

New Jersey based disability organizations and advocates will also testify against the bill.  Norman Smith will be testifying as President of Progressive Center for Independent Living and also on behalf of Resources for Independent Living and the Alliance Center for Independence.

In his testimony, which will be spoken by a friend due to his speech impairment, Mr. Smith wrote:

“I have had the unfortunate experience of dealing with doctors in emergency rooms. . . .’Better off dead than like that’ is in their eyes.

But then I can see their attitude change as they learn that I’m married, that I have a six-year old son, and that I have a job with responsibilities. . . . These are the same people who will be sitting in judgment on whether to prescribe life-ending drugs based on the word of a caregiver.”

Another disability advocate is Kate Blisard, who plans to testify as a “disability advocate, businesswoman, wife, mother, and grandmother . . . [and] abuse survivor.”  Her testimony states:

“Throughout my 30+ year career I have advocated for a better life for those committed to state institutions and nursing facilities. . . .  They are vulnerable . . . because their disabilities cause them to be dependent on others. . . . The abuse of elders and especially of people with disabilities is an epidemic in the shadows.”

Written testimony was also submitted by Diane Coleman, president and CEO of Not Dead Yet, and Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund.

Press Release: Not Dead Yet and New York Disability Groups File Objections to NY Medicaid Proposal, Alleging It Would Steer People to Choose Death Over Disability to Save Health Dollars

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[Editor’s Note:  I know that this press release is not news to our regular readers, due to our blog on the same subject two days ago.  But we like to put our press release text into the blog so that it is screen reader accessible, since the PRWeb pdf formatted versions are not accessible to everyone.  BTW, I had to go round and round with the PRWeb editorial staff to add explanations and connect the dots, as well as make it clear that we are “only” alleging that the Conversation Project is using a “better dead than disabled” approach in advance care planning conversations.  Not surprisingly, as with all minority communities, bias against our community is harder for others to discern or be concerned about.  The PRWeb version is here.]

On May 28, 2014, Not Dead Yet, the Center for Disability Rights and 11 other New York based disability organizations submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP).  The comment letter called upon New York officials to eliminate one of the proposed projects, which the letter alleges would fund Medicaid providers to save money by steering people to choose death over living with disability.

New York requested public comments because it is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations.  Among the 44 potential programs for grant applicants to consider are three palliative care projects.

One of these projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing hospitalizations.  Advance care planning is a process whereby individuals execute advance directives such as living wills to indicate medical treatments that they want or do not want under various circumstances. For this project to be effective in reducing hospitalizations, the comment letter alleges that people on Medicaid would apparently be encouraged to include in their advance care plan a refusal of life-sustaining treatment that might involve hospitalization.

A recent Pew Research study found that minority populations are more likely than whites to want all possible medical treatment available:

. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain.  [Views on End-of-Life Medical Treatments, November 21, 2013]

The state “Conversation Ready” project is focused on safety net providers and includes the following requirement:

Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]

In order to receive grant funds for reducing hospitalizations and healthcare costs, the comment letter alleges that providers would have to encourage individuals on Medicaid to “choose” death over treatment in their advance care plans. The methods by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.

The comment letter claims that the Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.  The letter quotes several excerpts from the Starter Kit on the Conversation Project website as examples of how living with disability is discussed in a negative way that could lead people to conclude that disability is a fate worse than death and, thus, execute advance directives that reflect that assumption.

“Understandably, people don’t want to lose their abilities due to an accident, illness, or age,” said Diane Coleman, President and CEO of Not Dead Yet.  “Yet disability is a natural part of the human experience and people adapt.”

The letter, joined primarily by organizations run by people with disabilities themselves, as distinguished from family members and service professionals, envisions an alternative approach.  “The role of healthcare professionals should be to provide accurate information and support to help people get past their fears and disability stereotypes,” said Coleman.  “They should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.”

The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled.  This was a major concern for Bruce Darling, President and CEO of the Center for Disability Rights in Rochester, NY.  “New York has agreed to implement the Medicaid Community First Choice Option to ensure that New Yorkers can enjoy their federal right to home and community based services,” according to Darling.  “The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to placement in a nursing facility.”

The comment letter supported the other two proposed palliative care projects and recommended that they be strengthened by adding information and services relating to independent living and the Community First Choice Option and by including representatives from disability and aging advocacy organizations on their advisory committee.

The following additional NY disability organizations that joined in these comments:  New York Association on Independent Living, Center for Independence of the Disabled, New York, Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.