Biden Introduces “Crime Victims with Disabilities Act” – but isn’t putting the word out at his Senate Website

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At first, I was really excited when I received email announcing Senator Joe Biden’s introduction of the Crime Victims with Disabilities Act – which reportedly occured yesterday, October 1st.

Unfortunately, except for the attached word document I received, and an email copy of a press release from the Association of University Centers on Disabilities (AUCD), I couldn’t find anything on the web anywhere documenting the introduction of the bill. (AUCD is one of several prominent disability groups that have endorsed the bill)

I called Biden’s Senate office and they did confirm his introduction of the bill and directed me to the description of it at Thomas.gov – you can see S.3668 here. The text of the bill isn’t there yet, but probably will be there by next week. The staffer I talked to seemed oddly unenthusiastic and nonresponsive to my questions about posting any info about the bill on Biden’s Senate website.

This bill is a version of one he introduced last year, which I wrote about in an earlier entry. It looks like a good bill that recognizes that people with disabilities are especially vulnerable to crimes of violence – and that the criminal justice system hasn’t been doing a very good job of helping people even when perpetrators are charged.

It seems odd to me, on the day of the Vice-Presidential Debates, that Biden wouldn’t go a little out of his way to remind people in the disability community that he is attuned to at least one part of the lived reality of Americans with Disabilities.

After all, Sarah Palin, who has a young child with Down syndrome, created a huge stir among parents of all political persuasions when she said (to parents of “special needs children”):

“I pledge to you that if we are elected, you will have a friend and advocate in the White House.”

So far, she hasn’t said anything about or to people with disabilities themselves.

This would have been Biden’s chance.

Tip to Biden and staff: Next time, when you do a good thing, let people know. –Stephen Drake

Update: Haleigh Poutre and the Strange Priorities of Massachusetts Legislators

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Wesley Smith has an update on Haleigh Poutre, who apparently – and hopefully – will be spared having to testify in the trial of her stepfather, Jason Strickland. Haleigh Poutre narrowly escaped the death planned for her by medical professionals at Baystate Medical Center and publicly-appointed guardians from Massachussets DSS. These professionals all signed off and went to court to seek removal of both ventilator and feeding tube from Haleigh Poutre just 8 days after her admission to the hospital. Poutre was in a coma, the result of injuries allegedly inflicted on her by her adoptive mother and stepfather, Jason Strickland. (NDY issued a press release calling for a larger investigation than actually happened)

Poutre’s adoptive mother committed suicide. Strickland, quite probably to avoid being charged with murder, fought the DHS in court, seeking to have Poutre’s life-support maintained.

In a case of incredible irony, the case took enough time to allow Haleigh to improve. In fact, news reports that she was awake and responsive emerged just one day after a judge approved the removal of Haleigh Poutre’s feeding tube.

If you’re looking for a hero in this story, you can stop now. There aren’t any.

And, under the radar, the legislative response is far from encouraging.

Back in March, for example, almost no coverage was given to the inaptly named “Haleigh’s Amendment” that was introduced – and passed into law:

‘Haleigh’s Amendment’

During debate last week on legislation pertaining to the abuse and neglect of children, which is intended to strengthen the Commonwealth’s oversight of children under the charge of the State, an amendment written by Sen. Scott Brown, R-Wrentham, was passed unanimously. The amendment protects victims from those who have been charged with their abuse or neglect.

Brown filed “Haleigh’s Amendment” in response to the tragedy of the Haleigh Poutre case in Westfield in 2005. Haleigh had been hospitalized as the result of alleged abuse at the hands of her adoptive mother and stepfather who had burned and beaten her into a coma with a baseball bat. While on life support, Haleigh’s stepfather attempted to obtain guardianship of her even though he was suspected of the abuse.

This amendment would prohibit an individual from being appointed a guardian or medical proxy if they have been charged with assault and battery, or neglect of the incapacitated child. In this case, the amendment would have removed any ambiguity as soon as the stepfather was charged.

Currently, the court may appoint a guardian for a person who is unable to make or communicate informed decisions due to physical incapacity or illness.

Please re-read the above with the circumstances of Haleigh Poutre’s near-brush with death in mind.

If this law had existed when she was admitted to the hospital, she’d be dead now.

That’s right. She’d be dead. Jason Strickland, motives aside, would have had no standing to challenge the DSS-appointed guardians in court. Haleigh Poutre’s death would have proceeded smoothly, efficiently and – most important of all – quietly.

It’s easy to see how this prevents the State from being embarrassed in a similar way in the future. It’s less easy to see – using Haleigh Poutre’s story as the rationale – how this is seen as furthering the “best interests” of children.

And, while the abuse of Haleigh was especially horrific, this bill strips all rights in medical decisionmaking from parents who haven’t actually been convicted of anything – and the bill strips those rights even from those charged with any level of neglect.

To be fair, though, the legislature finally got around to passing some other measures that seem to actually attempt to add some protections to children in situations like Haleigh Poutre’s, but it wasn’t on a fast track like the first bill.

According to Thaddeus Pope at the Medical Futility Blog, this legislation, which would require written second opinions and an approval from an ethics committee, is still pending.

Pope also refers to these pieces of legislation – relevant to situations such as Haleigh Poutre’s – as “end of life.” I guess he’s making assumptions about the outcome or just not bothering to reflect on the irony of using the term in this context.

I haven’t had a chance to read this pending legislation yet, but I’m not confident an ethics committee at Baystate would have gone against the medical recommendations to end her life. Similarly, if written second opinions are to really mean something, they should come from a qualified medical professional outside the original one.

In short, it looks like Massachusetts has made significant steps in making sure that a case like Haleigh Poutre’s never comes to light again. They have yet to make steps to make sure that medical railroading and abandonment don’t actually occur. It’s clear from where I sit which was more important to the legislature – avoiding future embarrassment or actually protecting children. And what I see doesn’t make them look very good. –Stephen Drake

Best Laid Plans Going Astray Again… Slight Delay on an Item or Two

Our News & Commentary Blog

No one’s ever accused me of being being organized even under ideal circumstances.

Having recently completed a move of home and work, circumstances (organization-wise) are far from ideal right now.

As I sat down to try to compose a promised comparison of UK and US coverage of consciousness research, I realized that some of the material I need isn’t available on the web any more.

It probably is available on my flash drive at home, though. Needless to say, I’m not home or I wouldn’t be writing this.

If all goes well, tomorrow I’ll be able to bring the drive with my files, have the IT people here check it for viruses and then copy everything I need to the computer in my office. If everything goes well, I’ll be able to write that promised piece tomorrow. If there are a few glitches, look for it on Monday.

Fortunately (or not) there are a couple of things I can write about today that don’t require access to my old files. They’re up next. –Stephen Drake

U.K. Article on Consciousness Research Contains Bombshell “Accusation”

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Last week, my email and blog alerts let me know about a “new” article on research into consciousness. Wesley Smith posted his entry on an article describing the activity of researchers in the UK seeking to reduce the 40% error rate in diagnosis of persistent vegetative state. Alex Schandenberg also featured the article and commented on it.

Turns out the article isn’t new, but was published in December of last year. I’m not sure how it got Wesley’s attention now instead of then. But I am grateful. I wasn’t near a computer much in December last year and would probably have missed this even if he or others had written about it.

“The Undead,” published in The Times, is simply the best discussion of the complexities of researching human consciousness that I’ve seen in the media. As anyone who follows these issues knows, there has been periodic attention given to research involving the differences between people in persistent vegetative state and those in a “minimally conscious” state the U.S. media as well as the UK. This article really stands out.

Rather than excerpting a lot of it – both Wesley and Alex have done an excellent job of pulling some intriguing pieces out of the story and commented on them – I want to highlight something that hasn’t gotten the attention of others – so far.

Toward the end of the article, European researcher Steven Laureys makes some assertions that would sound radical and alarmist coming from someone like me:

According to Steven Laureys, professor of neurology at Liège University, there is constant pressure in many parts of the developed world to withdraw sustenance from vegetative patients in order to allow them to die so that their body parts can be harvested. In a recent study, Laureys reports, “slightly less than half of surveyed US neurologists and nursing-home directors believed that patients in a vegetative state could be declared dead”. His remarks should be set against the background of widespread shortages of organs and body parts for transplantation. (Emphasis added.)

I am not familiar with the study that Laureys mentions, but would appreciate it if anyone could direct me to it.

The comments by Laureys may seem shocking, but they’re only shocking in the way that anyone who points out the “elephant in the living room” is shocking (e.g. the big thing that everyone knows but nobody talks about, like an actively alcoholic family member).

The pressure surrounding organ harvesting was a factor in the gruesome death of Ruben Navarro. Organ donation has also been an element of more than one “rush to judgment” case – or, as doctors prefer to call them “miracle recoveries” – more on this topic here and here.

Whether or not the sentiments expressed by Laureys are true – and I suspect that there are large numbers of ethicists and physicians who would deny that it’s the case – the important thing is to actually discuss these things. Is the push to withhold or withdraw treatment from people with cognitive impairments really all about what their wishes were or about medical standards of futility?

We’re not having that discussion here in the U.S., because we’re not discussing the implications consciousness research might – or should – have on life-ending decisions.

More on that tomorrow. –Stephen Drake

Actor/Activist Martin Sheen Voices Opposition to Assisted Suicide in Washington State

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The Coalition Against Assisted Suicide has started an advertising campaign featuring actor/activist Martin Sheen. Sheen alerts voters to the problems with Initiative 1000 (I-1000) in a powerful radio spot.

Known for his support and involvement in progressive causes off-camera, Sheen explained his desire to make this statement in a press release from the Coalition:

“I try to work when I’m not on the screen to help improve conditions for the most vulnerable people in our country — low wage workers, immigrants, the disabled and the poor,” Sheen said. “We have a health care system where the more money you have, the better medical care you receive. Initiative 1000 is a dangerous idea — because so many people do not have the money necessary to get the care they need. When I heard about Initiative 1000, I wanted to help stop it before it harms people who are at risk.”

There’s a button to play the ad on the same page linked above. But for those unable to hear the ad or to access the player for whatever reason, here is a transcript of Sheen’s radio ad:

Hello, this is Martin Sheen with an urgent message about Initiative 1000. It’s a dangerous idea that could hurt thousands of low-income people who need medical care. It’s a step backwards and I urge you to vote “no.”

Initiative 1000 would open up a loophole that health care insurers could exploit to cut payments for the disabled and the working poor, encouraging them to use assisted suicide. This is exactly the wrong direction for real health care in America.

We have a long way to go to fix our health care system and guarantee coverage for everyone; and we’ve fought hard for the protections and care we do have. But Initiative 1000 is not an answer. It’s opposed by nurses, disability groups and the 9000 doctors in the Washington State Medical Association. People who are ill need real medical care and compassion, not lethal drugs.

Again, I’m Martin Sheen urging you to vote “no” on Initiative 1000 and thank you.

This isn’t the first time that Sheen has lent his voice – or his signature – in opposing the promotion of assisted suicide and/or euthanasia. In 2000, he was one of many prominent human rights activists to sign onto a response to the “Citizen Activist” award given to Jack Kevorkian by the Gleitsman Foundation in 2000. The response, titled “PEOPLE WITH DISABILITIES ARE ENTITLED TO DIGNITY AND SOCIAL JUSTICE: A STATEMENT IN OPPOSITION TO HONORING DR. JACK KEVORKIAN” is still viewable online.