NDY Applauds Appointment of AAPD CEO Andy Imparato to Patient-Centered Outcomes Research Institute (PCORI) Board of Governors

AAPD, andy imparato, health care reform, medical discrimination, Our News & Commentary Blog

Great news coming out of Washington, DC last week.  Andrew Imparato, the President and CEO of the American Association of People with Disabilities (AAPD), has been appointed to the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors.

Here’s the relevant info from the AAPD press release:

WASHINGTON, DC – September 23, 2010 – The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership organization, is pleased to announce the appointment of Andrew Imparato, AAPD’s President and CEO to the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors.

The Patient Protection and Affordable Care Act of 2010 established PCORI as a non-profit organization to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by carrying out research projects that provide quality, relevant evidence on how diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed.  The Patient Protection Act directs the Comptroller General to appoint 19 of the 21 members of the PCORI Board of Governors. Today, PCORI announced AAPD’s President and CEO, Andrew Imparato, is appointed as one of the inaugural PCORI Board Members. Imparato will be part of this team, charged with reviewing the research given to the government regarding healthcare reforms and implementation.

Needless to say, just about every aspect of health care reform has been debated exhaustively – and the PCORI is no different.  The views on this board range from those who have suggestions about how they should do their work to those who put their concerns in terms of outright paranoia.

 Since PCORI will be looking at “effectiveness” in medical treatments, it does bear watching just how “effectiveness” is defined.  Is “effectiveness” to be defined in terms of how well a given treatment works?  Or will “effectiveness” rely in part on judging in certain treatments aren’t merited for certain people because they are too old or too disabled to justify the expense?

Knowing that Andy Imparato is part of the process provides some comfort.  He was general counsel and director of policy for the National Council on Disability (NCD) during the time the Council published its paper opposing legalization of assisted suicide.  Since then, he – and AAPD – have been at the forefront of advocacy againts genetic bias in employment, “futile care” cases, medical discrimination against people with disabilities and many other areas that overlap with NDY.

We at NDY congratulate Andy Imparato and thank him for his long-term advocacy and commitment to safeguarding the rights of people with disabilities.  –Stephen Drake

Robert Latimer – Murderer of Daughter Tracy Latimer – In the News Again

alex schadenberg, blog recommendations, bloggers, Canada, crime and punishment, Homicide / 'Mercy Killing', media coverage, media issues, Our News & Commentary Blog, tracy latimer

I can’t explain the feelings that go through me when Robert Latimer surfaces in the news again.  Robert Latimer’s murder of his daughter Tracy was pivotal in getting my attention directed at the euthanasia movement and in providing a solid foundation for my opposition to the movement.

Even though it looks like I haven’t written anything here on the blog about Tracy Latimer’s murder, the role the public debate about her murder played in my turn to activism has long been a part of my official bio:

During his years at Syracuse, one key event turned his interests and passions toward assisted suicide and euthanasia. In the early 1990s, Robert Latimer, a Canadian farmer who murdered his disabled daughter, Tracy, became a “poster child” for the Canadian pro-assisted suicide groups. Tracy Latimer was not dying and she did not ask to die. In 1996, while growing increasingly alarmed over the “better dead than disabled” rhetoric of the pro-euthanasia movement, he learned of the formation of Not Dead Yet and dropped everything to join its first protest action.

How far did the euthanasia activists in Canada go in embracing the killer of a nonterminally ill child who never asked to die?  What did the champions of autonomy have to say?

Here’s one example from a Canadian “right to die” leader, quoted in a 1994 NY Times article on Robert Latimer.  She is reacting to the imposition of a 10-year prison sentence:

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.”

It’s not often that people you didn’t know were your enemies declare themselves so openly.  When Seguin equated parenting Tracy Latimer to being under a prison sentence, it also meant that her murder was a release – but not for Tracy.  By her reckoning, it was Robert Latimer who engineered his own “release.”

Alex Schadenberg has posted about the latest round in news coverage – which revolves around efforts to get Latimer’s parole conditions loosened.  I recommend reading Alex’s post on the subject.

No disrespect to Alex, but in all honesty, I found a blogger who has written two posts on this latest round of press coverage that seems to touch every single element in the complex mix churning in my own stomach every time Robert Latimer is in the news again.

On August 19, Trouble posted a blog entry titled “This post is about Tracy Latimer’s Murderer“:

OH YAY! Gentle reader, I’m here to inform you that once again Tracy Latimer’s murderer is in the news, which means we can deal with another week or two or months or years of people wibbling on about how Tracy Latimer’s murderer is such a sweet innocent man who only murdered his disabled daughter because Tracy wasn’t really a person and deserved to be murdered, and how he’s such a victim of the system, and woe is poor him, and how cripples really DO have no life and it’s totally okay for people to murder disabled children, as long as they don’t have a disability and murder their own non-disabled children. Those people are menaces and should be locked up forever!!!!!!!!!!!

That was just for beginners.

She followed up with the post “it has begun“:

I’m sure this weekend and into next week will be full of these shit-tastic stories, and I’m going to spend the whole damned week in a state of rage, and people will tell me to calm down because, you know, it’s okay, it’s just some 12 year old girl whose been dead since 1993.

She also left a comment in that section on the second post that accurately describes how Tracy Latimer is treated in stories about her own murder.  And it’s a treatment that I’ve seen repeated in countless stories involving the murders of both adults and children with disabilities:

It’s also something it’s really hard to talk about. I try to blog about it calmly and rationally and then I remember that these people think that Tracy should be a footnote in her own murder, and I lose it.

I confess to having many of these same thoughts and feelings churning inside on a regular basis.  Some days, it can be very difficult to write “calmly and rationally.”

Please read both of Trouble’s posts on Tracy Latimer’s murder.  I only shared a small excerpt and her posts should be read in their entirety.  First go here and then here.  –Stephen Drake

ADAPT is in DC! How to Follow the Action(s)

activism, ADAPT, advocacy, budget reduction, disability rights, long term care, Medicaid, Our News & Commentary Blog

I really should have posted this over the weekend, but got waylaid by the usual parade of mundane but demanding household tasks that tend to occupy that timeblock.

On Saturday, September 19, ADAPT activists from around the country converged on Washington, DC for several days of political advocacy and direct action.

Here’s how ADAPT’s September 16 press release described the days to come:

ADAPT Activists to Storm Washington DC; 
Vow to Fight State Cuts to Medicaid Home Services

Fighting dangerous state Medicaid budget cuts across the country, the 
national grassroots disability rights action group ADAPT is planning 
direct actions at several venues in Washington, DC between September 19 to 
22 to demand that states save Medicaid-funded home and community based 
services. These services support low income people with disabilities and 
who are aging to stay in their own homes instead of being forced into 
nursing facilities to obtain services. During this critical election 
season, ADAPT plans to make it clear that saving Medicaid services is key 
to winning the disability vote.

"During this time of fiscal panic, governors are looking for ways to save 
dollars," notes Mike Ervin of Chicago ADAPT. "Hundreds of us are coming to 
Washington because Congress and the White House need to step up efforts to 
protect Medicaid community services in the states. I use home services and 
without someone to assist me, I'd be waiting on some nursing home aide to 
change me or feed me whenever she was done with the other fifty people 
living in the same facility. With home services, I am in charge of my 
life."

Current Medicaid law mandates that states use their Medicaid programs to 
pay for nursing homes, but the law does not equally mandate that states 
pay for the same services in a person's own home. Today, most states 
recognize that providing home and community based services (HCBS) is a 
less expensive solution than institutions. However, in these tight fiscal 
times, Medicaid dollars funding "optional" services like HCBS are first on 
the budget chopping block, while the mandatory institutional budgets are 
rarely touched. ADAPT's current "Defending Our Freedom" campaign is a 
direct response to states' attacks against HCBS, services that allow 
people with disabilities to take care of themselves, raise their families 
and be part of society.

"Without the home services funded by Medicaid, hundreds, if not thousands, 
of people with disabilities in my state would be forced to live in nursing 
homes or institutions," said Joe Stramondo of Michigan ADAPT. "Some states 
are virtually on the edge of bankruptcy. It makes no sense to spend extra 
dollars on institutions when those same dollars could fund more people 
with disabilities to live in the communities of our choice."

To a lot of readers coming to this blog from outside of the disability community, this might seem like a departure from our usual focus. It’s not. Not Dead Yet is a disability rights organization that engages in activism, including direct action. A majority of the disability activists who have marched, protested, chanted and even been arrested under the NDY banner were ADAPT activists (and still are) long before NDY was formed.

And make no mistake, the issues that ADAPT takes on are life and death issues for the millions of American with disabilities of all ages.  Check out this link and you’ll find the blog entries on this blog that feature ADAPT – many of them in situations acting in support and solidarity over NDY issues.

I’m not sure if or when I’ll be posting anything from the ADAPT action on the NDY blog this week.  There’s a lot to catch up on in terms of NDY-specific issues.

Here are sites/links you can check for news, reports, information, etc. about ADAPT and this week’s actions:

In addition check out this coverage of yesterday’s ADAPT action at CNN iReport.

Down But Not Out: Bill Peace (Bad Cripple Blog)

blog recommendations, hospitalization, medical issues, Our News & Commentary Blog, william peace

Hopefully, a lot of regular readers have become familiar with Bill Peace’s Bad Cripple Blog.  I think I’ve excerpted, reacted to or just plain pointed to his blog more than anyone else’s – check out this link for the NDY posts in which he’s been featured in some way.

Bill’s blog went silent for almost two weeks, which is unusual. On Wednesday, he announced that he’s in the hospital with a major health problem – a pressure sore he describes as a “hole in his hip.”  The next few months will be tough ones for Bill – physically and financially for sure.  My own experience of long hospital stays (my longest was about 6 weeks when I was ten years old) is that they kind of shrink your psyche (or at least that’s how I think of it).  Staying in the same room for days and weeks with only the medical staff – for me, anyway  – shrinks my energy, my ability to assert myself, and other essential survival traits that aren’t valued or nurtured in a hospital setting.

Bill says he plans on writing daily (I hope he manages to come close to that), chronicling his road to recovery, health and home.

Check out, in order:

And then check back on a regular basis at Bad Cripple.

I offer two excellent reasons for reading his blog – now more than ever.

First, anything Bill Peace writes is worth reading.
Second, I’m sure he’ll enjoy seeing people coming and reading the blog – especially if you leave comments.  –Stephen Drake

George Exoo Resurfaces – Plans for Swiss-like “suicide tourism” at death house in North Carolina?

assisted suicide, documentary, final exit network, george exoo, hospice, media coverage, North Carolina, Our News & Commentary Blog, right to die

Remember George Exoo?

Check out the link above for a reminder.  He’s the founder of the “Compassionate Chaplaincy” and claims to have aided in over 100 suicides.  According to the documentary by Jon Ronson, “Reverend Death,” Exoo’s phone number was given out by other so-called “right to die” groups – if the caller was someone who wanted help killing themselves but wasn’t terminally ill – or physically ill at all.  Obviously, this was before the establishment of the Final Exit Network (FEN) – an organization that defines “eligibility” for suicide assistance as broadly and “generously” as Exoo did.

There’s no evidence that he requested any payments for his “services,” but – at least in the case of his Irish client, he received ample reimbursement and assistance for European travel that he and his partner were already planning.  Hence the poster below:

We’ll have to redo the poster.  Ditch the mustache and ditch the travel pitch.  Seems Exoo is no longer a travellin’ man.

The story now – breaking first in the Irish press and later in North Carolina – is that Exoo wants to open up a “right to die” facility in Gastonia, a suburb of Charlotte, North Carolina.

The most detailed article from North Carolina so far was written by Diane Turbyfill in the Gaston Gazette:

A West Virginia man hopes to turn a run-down house in the Smyre Mill Village into a center to assist people with suicide.

The Rev. George Exoo, a Unitarian minister, has attended and sometimes assisted with more than 100 suicides.

He bought a Gastonia property three years ago with the intent of renovating and selling it. The quarter-of-an-acre lot has been trouble, according to Exoo. The improvements he planned have not been completed. Exoo still owns the two structures and now thinks they might be the landscape for an idea he’s considered for years — a facility to help people end their lives.

“It just seems to me that there’s a real need, particularly for people in states where this is outlawed, where people can die with dignity,” said Exoo.

The property in Gastonia would be ideal for Exoo’s vision because of its close proximity to the airport in Charlotte, he said. His primary customers would be the sick and hopeless from areas like Florida, New York and Maryland, Exoo said.

If you read the whole article, one gets the feeling this is probably just one of Exoo’s flights of fancy.  He’s got a picture in his head of what this little death house would look like that bears no resemblance to the small piece of property with a small house and adjoining shack.  A dream that would turn this little suburb into the “Suicide Tourist” mecca that Dignitas has made out of Switzerland.  I doubt that even supporters of assisted suicide would want any death house run by Exoo in their neighborhood.  In Switzerland – Dignitas gets booted from one building/location to another.

Who knows? Maybe Exoo just finished rewatching “Field of Dreams” and thought “If I build it, they will come” (which might not be a bad caption for the new poster caption).

Stay tuned, though.  Where Exoo goes, death or serious weirdness follow.  Sometimes both.  And it’s not a good kind of weirdness.  –Stephen Drake