Would You Rather Die Than Go To A Nursing Facility? Time For the Community Integration Act!

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One of the issues that we have with The Conversation Project is that the online materials suggest that a nursing facility is the only alternative to being “independent”.  (The notion seems to be to ask, “If you had to go to a nursing facility, wouldn’t you rather have an advance directive that declines life-sustaining treatment?”)

It’s very disturbing that they don’t seem to have heard about Olmstead and home and community based services.  Why don’t they ask, “If you could get long term services and supports (LTSS) to stay in your own home, would you choose to live with a disability?”  (You can read more about our issues with The Conversation Project in our recent blog about our comment letter to New York’s Dept. of Health.)

Admittedly, it’s a long haul.  ADAPT has been working the LTSS issue for 24 years.  Every state had some type of Olmstead activity by now, but no state gives everyone the choice to receive long term care services at home, so we have more work to do.  Here’s a press release about the next step, led by ADAPT and Senator Tom Harkin.

06/30/2014 ADAPT PRESS ALERT:                               

WHO:       ADAPT and Senator Tom Harkin

WHAT:    ADAPT and Senator Harking Announce the Introduction of the Community Integration Act (CIA)

WHEN:   Wednesday, June 25, 2014

On June 25, 2014 Senator Tom Harkin, a long-time disability rights champion, introduced the long-awaited Community Integration Act. This legislation, if passed, will codify in law the Supreme Court’s 1999 Olmstead decision in which the court found that persons with disabilities have a right to live in least restrictive—community settings. Last year Senator Harking commissioned an important study that found that most states are falling far short of the promise and obligation that is implicit in the Olmstead decision. Accordingly, this legislation:
Amends the requirements for the Medicaid State Plan so that any individual who is at the institutional level of care must be provided equal opportunity to receive home and community based services. The state also needs to meet new requirements for providing home and community based services. The legislation has a section that defines and strengthens key terms including the definition of “home and community based”.

The legislation includes a section that addressed the ways that states limit or restrict access to home and community based services, including a requirement that states address the needs for affordable, accessible, and integrated housing.

The legislation incorporates the remedies and procedures of the Americans with Disabilities Act into the Medicaid law and creates a new enforcement mechanism where the Secretary of Health and Human Services can reduce the federal Medicaid match for a state that fails to comply with the law.

The legislation adds a new requirement that states needs to report on their progress in providing community integration.

The legislation ends institutional bias by including home and community based services as a mandatory service for all states.

And finally, it includes a clause that provides states with the time they need to amend state law to comply with these new requirements.

Our thanks to Senator Harkin for this crowning legislation that marks decades of selfless commitment to the cause of the right of persons with disabilities to live in the community.

Press Release: Not Dead Yet Applauds Disability Rights Advocates for Key Role in Stalling New Jersey Assisted Suicide Bill

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[Editor’s Note:  The PRWeb version of this release in pdf format with a photo of John Kelly is available here.]

In a stunning defeat today for proponents of assisted suicide, the New Jersey assisted suicide bill A2270 was pulled from the floor and tabled until September for lack of votes. Not Dead Yet applauded New Jersey disability advocates as press reports credited disability rights opposition for the defeat.

“The bill was shown to be extremely controversial,” said Marilyn Golden of the Disability Rights Education and Defense Fund. “It has bipartisan opposition and is widely opposed by a diversity of groups, including the disability community.”

In the June 26, 2014 Star-Ledger postmortem, Statehouse reporter Susan K Livio reported that disability advocates “turned out in force” to testify at the bill’s hearing.

“We have a lot of reasons for concern about legalizing assisted suicide,” said Diane Coleman of Not Dead Yet. “One of our biggest concerns, given the rising tide of abuse of elders and people with disabilities, is that no law can prevent assisted suicide coercion behind closed doors.”

Reports from the state house had sponsors two votes short of a majority. The bill has been shelved until September, when Assemblyman John Burzichelli hopes to bring it back.

“The more legislators learn about the details, the more they turn against an assisted suicide bill,” said Not Dead Yet regional director John Kelly, a New Jersey native. Kelly is also director of Second Thoughts Massachusetts.

“We are 4 for 4 this session – New Jersey joins New Hampshire, Massachusetts, and Connecticut in having ‘second thoughts’ about assisted suicide,” Kelly added. “We also know that we need to be prepared for ongoing advocacy, and we’re ready for that.”

Kelly joined disability rights advocates from New Jersey along with the Medical Society of New Jersey and faith-based groups in bringing the opposition to the legislature.

UK: Assisted Suicide/Euthanasia Appeal Dismissed By Court

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From www.politics.co.uk:

Supreme court judges have dismissed a bid to effectively make euthanasia legal in the UK, after months of deliberating behind the scenes.

A majority of the panel of nine judges upheld the decision of the high court that existing laws preventing doctors from assisting with suicides do not infringe the rights to privacy or a family life under the European Convention of Human Rights.

The decision will be a hammer-blow for Paul Lamb, who was near-paralysed in a traffic accident 20 years ago and wants to end his life legally.

It follows the death of Tony Nicklinson, who suffered from ‘locked-in syndrome’, after losing his high court bid last year. His widow Jane had pursued the appeal alongside Lamb.

Not Dead Yet UK issued the following reaction:

Naturally we sympathise deeply with the disabled people who brought this legal case and their families but there is much truth in the adage that ‘hard cases make bad law’.
Euthanasia and assisted suicide is profoundly dangerous, irrespective of such hard cases, not least because they pose a very grave risk to thousands disabled people who have been made vulnerable by cuts in health and social care services and welfare benefits, making some feel they would be better off dead and no longer a burden on their family and friends.

We very much welcome, therefore, the ruling by the Supreme Court today because it protects the many whilst compassionately responding to the few by rarely prosecuting those who assist them with their wishes to die. Without this bright line we risk sleepwalking into state sanctioned killing.

Founder of Not Dead Yet UK Baroness Jane Campbell said “We can only hope that Parliament will heed the wisdom of the court by rejecting Lord Falconer’s very dangerous Assisted Dying Bill.”

Notes:
The new Bill comes to the House of Lords for its second reading 18 July 2014
Disabled people are almost universally against this Bill
Some small number of ‘hard cases’ do not make opposition to this Bill any less urgent.
Contact Dr Kevin Fitzpatrick, Spokesperson/Researcher for Not Dead Yet UK for further information at kevin@inclusion21.org or 07816671185

 

 

“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.