Guest Blog: Paul Timmons - It's Time to Stop Playing Nice With the Emergency Management Community After Continued Failure to Serve Disabled Disaster Victims

 Shortly after posting Susan Dooha's blog post on the lack of accessibility she encountered in emergency shelters during Hurricane Irene, I asked a friend and colleague if he'd be interested in writing a reaction/followup to Susan's post.  Paul Timmons has a lot of experience with disaster relief - what entities such as the Red Cross do  and don't do, and the areas in which "fall short" would be too kind a description for FEMA's performance.  Paul's response follows directly below, but there is more information about Paul and ways in which you can help people in disaster situations that FEMA and the Red Cross don't reach effectively or consistently, to say the least.  Please read my afterword.

Now, here's Paul Timmons:

The problem with disaster preparedness and response work is that it is extremely difficult to get people to care until we have an event at hand.

But if you're one of the crips who can't access one of those shelters Susan Dooha told us about, you're gonna care a lot....right up to the point you die in the storm.

In countless media appearances after hurricane Ike, I said that the biggest lesson we learned from Ike was that we hadn't learned anything from Katrina, three years earlier.  Not a single 'special needs shelter' in Houston was accessible. Well, another three years have passed and...here we go again.

I guess there's supposed to be some solace knowing they don't call them 'special needs shelters' anymore.  But, frankly, I'd be willing to give that up if crips could actually get into them and take, well, shelter.

Millions of dollars have been spent on the subject since Katrina.   Seriously...millions.   Conferences have been held...conference calls have been had...'plans' have been laid....press releases have been released....promissory 'contracts' have been signed, amidst great fanfare....and it's been discussed ad nauseum.  And yet, just a few days ago, a leader in our greatest city finds that, as a practical matter, it has all been for naught.

And it's not just Irene.  We have seen it in every domestic disaster to which we've responded.  Alabama, North Georgia, Joplin, the Florida and Mid-Western floods.  There's always a lot of talk and posturing from FEMA and state and local emergency response types...while crips suffer...and die.

I had high hopes that FEMA would become an effective bully pulpit on this issue.  But it hasn't happened.  My view is that FEMA is so hopelessly dysfunctional that even the best intentioned people can't really do much with it.  In fact, all the vapid chest thumping on this issue is dangerous.  It creates a false sense of accomplishment.

The fact that there's somebody in a wheelchair sitting in on the meetings makes everybody feel all warm and fuzzy.  But almost always, any attention to people with disabilities stops there.

And there's this:  Every time somebody throws us a bone...we go hide in the corner and quietly play with it.

So....What's to be done?

Well....we have to stop playing nice. 

Some of this stuff is probably actionable.  So let's sue somebody.

Let's engage in direct action on the issue.  And let's start at FEMA HQ in DC. And local, state and national Red Cross offices.  And city, county and state emergency management offices.

Let's create our own infrastructure...operate our own shelters........take care of ourselves.

We have the people power and networks to fix this.  What we don't have, yet, is an understanding of this fact:  The Overlords of the emergency management community have shown to an indisputable certainty that they don't really care whether we live or die. 

And ya know what?  As I wrote that last line, it occurred to me: it's not entirely accurate.  The reality is...they're actually trying to kill us.

Afterword: 

 

I think readers should know that Paul's outrage is a result of extensive experience.  See, Paul doesn't just express his outrage about the inefficiencies and ineptitudes of government agencies and "helping" organizations - he spends a lot of time and effort trying to do something to make the lives of the overlooked victims of natural disasters easier.

 

For almost ten years, Paul has been working tirelessly with Portlight Strategies, Inc., a  501c3 organization that is dedicated to "meeting specific needs of the underserved, unserved and forgotten people."  It turns out that there are significant groups of people in disasters and emergency situations who that get overlooked, get minimal help, or don't receive aid that is actually "helpful."  People with disabilities is just one of these groups.  That's where Portlight Strategies comes in.

 

If you want to know more about Portlight Strategies, check the "Our Story" section of their site.

Please also check the FAQ section, for instructions on how to contact and/or donate to Portlight Strategies; This link lets you access a copy of the organization's 2010 financial report so you can see how they spend their resources.

 

Please take the time to learn more about the organization and if you want to help out with disaster relief efforts - past, present and future - please consider giving to Portlight Strategies - which concentrates on getting to those getting the least with those things they need the most.

 

CNN: "Choosing death can be like a 'birth,' advocates say" - NDY and NCD perspectives included

Two interesting and fairly unusual related things happened over the last two weeks.

First, CNN reporter Elizabeth Landau contacted both NDY and the National Council on Disability (NCD) for interviews in connection to a story on assisted suicide.  This was surprising considering that when CNN ran a mini-media tour with Jack Kevorkian during the promotion of the HBO docudrama "You Don't Know Jack," everyone who interviewed Kevorkian avoided mentioning that most of his "clients" weren't terminally ill.  And, of course, no one contacted any disability groups for our take on Kevorkian.

The second surprise is that when the article came out on the CNN website today, the views and concerns are fairly presented in the context of an article on the activities of the assisted suicide advocacy group "Compassion and Choices," also known as "Conflation and Con Jobs."  That's no reflection on Ms. Landau, whose work I am unfamiliar with.  The negative expectations are based on overall patterns when dealing with media rather than anything with her - or even CNN - specifically.

As I said, though, in this case I can say that I, as NDY spokesperson in the article, am represented fairly and accurately - with minor quibbles that I won't even mention, since they happen with just about every interview as a result of the inevitable distortion that comes into play in human communication.

The article, Choosing death can be like a 'birth,' advocates say, does indeed deliver some content every bit as creepy as the title might lead you to believe:

Portland, Oregon (CNN) -- James Powell could barely speak on the day he died; cancer had confined him to bed and heavy painkillers left him only semi-lucid. Yet the mood was almost celebratory as 25 people -- family, friends and volunteers -- gathered in a large living room to tell stories and say goodbye on the day Powell chose to end his suffering.

Here's the piece of the article that contains the bulk of the comments from me and NCD:

The law is significant for more than just the few people who actually go through the entire process of obtaining lethal medications and taking them, said Barbara Coombs Lee, president of Compassion & Choices.

"End of life care and empowered patients are better for everyone in the state," she said.

But this creates a double standard for the prevention of suicide, argues Stephen Drake, research analyst for the organization Not Dead Yet, a disability advocacy group that opposes physician-assisted suicide.

In his view, the Death with Dignity Act establishes a two-tiered system in which some people's suicides are more encouraged than others. It's the idea that young, healthy and nondisabled people should be prevented from dying, while the deaths of the old, ill and disabled should be facilitated, he said.

"When you look at it that way, it doesn't look so much like empowerment's at work," Drake said.

There's a difference between helping a patient feel comfortable at the end of life and "making killing an acceptable part of medical practice," he said. He said he fears advocates will attempt to expand the established law's requirements to include more and more people, although Coombs Lee said her organization has no interest in broadening the eligibility rules for the Death with Dignity Act.

Groups like Not Dead Yet and the National Council on Disability are also concerned that the top three reasons for people using the law in Oregon are consistently "loss of autonomy," "decreasing ability to participate in activities that made life enjoyable" and "loss of dignity." These reasons seem to be predicated on the notion that a disabled life is viewed as one that is not worth living, opponents of assisted suicide argue. The disability council would like these reasons examined more closely.

 There's a little bit more in a different part of the article and I hope people read the whole thing.  It would also be helpful if some folks took time to write in the "comments" section at CNN.

One mentionable quibble I have is that there isn't any mention in the article of the other advocacy groups in the US pushing for broader "eligibility" for suicide assistance.  The activities and advocacy of the Final Exit Network (FEN) provide evidence that supports our claims that there will be efforts to expand the eligibility for "assistance" in suicide, since many assisted suicide advocates don't think the Oregon law goes nearly far enough.

And, finally, yes, the quote with me using the term "end of life" is accurate.  I really used it.  I promise to try to never do it again. --Stephen Drake

ADDENDUM: NCD issued a comprehensive report on Assisted Suicide from a disability perspective in 1997.  It reissued the report with a new cover memorandum in 2005.

Both can be accessed at the links immediately above.

Guest Blog: Susan Dooha on "Lessons Not Learned" in NYC Emergency Shelters for PWDs

Intro:  Over this last weekend, many people in the disability community were watching the progress of Hurricane Irene and hoping that - finally - disabled people were being properly taken into account in emergency plans.  Judging from the reports from Susan Dooha, Executive Director of the Center for Independence of the Disabled, New York (CIDNY), it's lucky for disabled people in NYC that the worst-case scenarios didn't play out.  Mostly, NDY focuses on issues such as euthanasia, assisted suicide, futile care cases and other direct attacks on the lives of disabled people.  But as we saw from the people abandoned to die in a nursing home and killed in a hospital during Hurricane Katrina, disasters can be very deadly for disabled people of all ages, through abandonment and worse.

Rather than describe those reports, we asked Ms. Dooha to share her experiences inspecting shelters in NYC and what she found:

Since 2001, our New York City disability rights agency has been working with OEM (Office of Emergency Management), FEMA, VOAD (National Voluntary Organizations Active in Disaster) and other organizations on emergency preparedness and disaster response. In 2001, we published a monograph "Lessons Learned" about the experiences of people with disabilities on September 11th. Among the issues we raised at that time were a lack of preparedness to include people with disabilities. Inaccessible shelters and transportation issues, etc.

In the intervening years, we have tried to work with these entities to improve their preparedness. We have provided training, consulted on strategy--suggesting approaches, have attended endless meetings. We succeeded in getting them to include "actual" people with disabilities in their preparedness drills (or at least a couple of them) and continually raised unresolved issues.

In preparation for today, we received assurances that the shelters would be accessible--entries, cots, bathrooms--unlike 9/11. On the strength of this information, we contacted people with disabilities in Zone A areas and advised them of the nearest shelter and encouraged their cooperation in evacuation efforts.

Today, to see for myself that they were safe and that we had been properly counseled, I went to 6 shelters in Manhattan, Brooklyn and Queens serving people in Red Hook, Fort Green, Long Island City and Lower Manhattan. I found: dangerous ramps leading to locked doors; food up flights of stairs that people with disabilities would not be able to climb; inaccessible bathrooms; cots that would be unusable by people using wheelchairs; lack of volunteers trained to deal with these issues; reliance on elevators (where they existed) that would go out in the event of a power outage; accessibility signage leading to locked doors; reliance on inaccessible transportation (school buses) etc. I focused on these areas because they include many people living on fixed incomes who would not have the wherewithal to evacuate on their own, don't have family or friends to help--or with accessible apartments to shelter them, and who couldn't afford to evacuate.

I have been contacted by someone who says that her friend went to a shelter and was turned away because she was in a chair. I will be pursuing her experience.

I applaud the excellent work of volunteers in the shelters--but am very deeply disturbed by the continued recalcitrance of the City and Federal government when it comes to emergency preparedness and disaster response. I think that the City and State had a wake up call on violations of federal civil rights with 9/11 and again with Katrina.  I think that they hit the snooze button.

I think they need another wake up call.  --Susan Dooha

NJ Governor Vetoes POLST Bill, Suggests Revisions

Much of the state level legislative activity concerning POLST (Physician Orders for Life-Sustaining Treatment) has been carried out under the general public’s radar. But when Governor Chris Christie vetoed the New Jersey POLST bill yesterday, it hit the news feed.

According to NEWJERSEYNEWSROOM.COM and the Governor’s veto message –

While noting the prospective benefits in guiding end of life patient care for New Jerseyans by utilizing POLST forms, Christie cited concerns with the provisions of the bill that would effectively allow a patient’s wishes to be overridden by the patient’s physician or healthcare representative without the patient’s prior consent, and that would mandate an alternative dispute resolution as a prerequisite to a patient’s or his or her representative’s right to go to court to protect a patient’s wishes. Christie recommended changes to further protect a patient’s health care wishes.

Sounds good, but I’ve been pretty concerned about Governor Christie’s Medicaid cuts, so I had to look at the details.

The veto message included specific guidance on how the POLST bill could be amended to correct its defects. The original bill requires the individual’s or healthcare representative’s signature (Section 6.b.(2)), along with the physician’s or advanced practice nurse’s (APN’s), so that’s good.

But then it states that the physician or nurse can change the POLST form “after conducting an evaluation of the patient and, to the maximum extent practicable, acting in consultation with the patient or the patient’s representative . . ..” (Section 7.a.) Weasel words. Here is Christie’s edited version:

If the goals of care of a patient with a completed POLST form change, the patient’s attending physician or APN may, after conducting an evaluation of the patient and after obtaining informed consent from , to the maximum extent practicable, acting in consultation with the patient or, if the patient has lost decision-making capacity, the patient’s representative in accordance with subsection d. of this section, issue a new order that modifies or supersedes the completed POLST form . . . .

Weasel words deleted.

The section we just considered refers us next to 7.d. which, in the original bill, gave the healthcare representative virtually unfettered discretion to change the POLST form at any time if the individual lost decision-making capacity. Christie’s revisions to section 7.d. begin as follows:

If a The POLST form shall provide the patient with the choice to authorize the patient’s representative with the ability to revoke or modify the patient’s POLST if the patient who has a completed POLST form has lost loses decision-making capacity.

This and further revisions of section 7.d. provide that the representative’s power to revoke or modify the POLST form is determined by the individual.

Finally, the original bill requires disagreements between the individual, their representative and the physician or nurse to be submitted for resolution through the ethics committee or other process of the health care institution before being taken to the courts.

8. a. In the event of a disagreement among the patient, the patient’s representative, and the patient’s attending physician or APN concerning the patient's decision-making capacity or the appropriate interpretation and application of the terms of a completed POLST form to the patient's course of treatment, the parties: (1) shall seek to resolve the disagreement by means of procedures and practices established by the health care institution, including, but not limited to, consultation with an institutional ethics committee, or with a person designated by the health care institution for this purpose; and (2) upon a failure to resolve the disagreement in the manner set forth in paragraph (1) of this subsection, may seek resolution by a court of competent jurisdiction.

Such disagreements might involve, for example, a health care provider’s futile care judgment, so speedy access to the courts can be a matter of life and death. Christie’s revisions give the parties the discretion to use either the institution’s procedure or the courts.

Since legislative intent can be difficult to synchronize with legislative drafting, one could give the original drafters the benefit of the doubt. The bill’s primary sponsors (insert S2197 into Bill Search link, then click on bill no. for these details) included at least one physician, Herb Conaway, Jr., and one nurse, Nancy Munoz, as well as a lawyer or two. Maybe they didn’t intend to make it easier for a healthcare provider or healthcare representative (surrogate) to overrule an individual. Maybe they didn’t intend to set up an alternative dispute resolution procedure that could prevent someone from getting to court in time to save a life.

The original bill was adopted on a 37/0 vote in the NJ Senate and 60/6 in the Assembly (not counting abstentions and non-voting) (insert S2197 into Bill Search link, then click on bill no. for these details). We’ll see whether the bill language is revised to add protections before it next comes up for a vote. – Diane Coleman

Not Getting on the POLST Bandwagon

I just learned that the Illinois legislature passed a bill authorizing Physician Orders on Life-Sustaining Treatment (POLST) (ILH 3134) which was signed by the Governor last week. We haven’t addressed POLST on the NDY blog yet, but it’s a primary focus of legislative activism on the part of the so-called “end-of-life” coalitions that formed during the height of 1990’s mega funding through Last Acts.

The argument for developing POLST forms is that advance directives can be long and complicated, specifying various health conditions and treatment options, potentially requiring both a doctor and attorney to determine how they would apply in a given real life situation. Perhaps more significantly, research continues to show that most people don’t have advance directives. So the argument goes, emergency medical personnel and most other health care providers can’t process the advance directives if a medical crisis or decision point arises, so they resuscitate or otherwise aggressively treat someone who didn’t want it. POLST is a short and simple form, brightly colored, that is supposed to tell medical personnel what to do.

The POLST provision in the Illinois bill is amazingly brief.

In consultation with a statewide professional organization representing physicians licensed to practice medicine in all its branches, statewide organizations representing nursing homes, registered professional nurses, and emergency medical systems, and a statewide organization representing hospitals, the Department of Public Health shall develop and publish a uniform form for physician do-not-resuscitate orders that may be utilized in all settings. The form shall meet the minimum requirements to nationally be considered a physician orders for life-sustaining treatment form, or POLST, and may be referred to as the Department of Public Health Uniform DNR Advance Directive. This advance directive does not replace a physician's do-not-resuscitate (DNR) order.

The bill’s reference to national standards presumably refers to the concepts promoted through the National POLST Paradigm Task Force (“Task Force”).

A major concern that NDY has about POLST is that some state laws only require the doctor to sign the form that will be used as the basis to deny life-sustaining treatment. Although the national Task Force recommends that the individual or surrogate signature should be required, it is not required in New York (though there is space on the form for it), and is apparently not proposed to be required in Illinois. According to a letter urging the Illinois Governor to sign the POLST bill into law, promoted through the Chicago End-of-Life Care Coalition:

The new IDPH Uniform DNR Advance Directive form will be a standardized advance directive and a secure document that is completed by a person who is known to have a terminal illness, a chronic condition that will lead to cessation of life, is generally frail, or lives in a nursing home. As a Physician Order for Life Sustaining Treatment (POLST), it is signed by a doctor after the patient has selected clearly presented treatment choices, then entered into the patient’s medical record, and therefore a secure directive for future medical care. (Emphasis added.)

The only purported justification I’ve heard from POLST advocates for why the patient needn’t sign the POLST form is the suggestion that it would be too inconvenient because they are sick. That explanation doesn’t make sense if the person is able to complete the form as described in the Illinois letter.

But the larger question is how can health care providers know that a POLST form signed only by a physician accurately reflects the wishes of the individual? The answer given by POLST advocates is that the physician is supposed to fill out the POLST form based on direct communications with the individual or their surrogate. Basically, we’re all supposed to trust the physician to have those discussions and document them accurately.

There are a lot of potential reasons to doubt whether such unquestioning societal trust can ever be justified in the real world, reasons derived from factors like insurance coverage denials, medical error, medical malpractice, time constraints on physician visits, contractual constraints on “utilization” (i.e. provision of medical treatments), to name a few.

But perhaps the most glaring factor that comes to my mind is the existence of laws in many states which allow physicians to overrule an individual’s advance directive, or individual or surrogate decision, in favor of life-sustaining treatment. These are generally called futility provisions, but they don’t objectively define “futility". Instead they leave it up to the physician to determine what treatments are required by the prevailing standard of care and what treatments are not. Blanket authority and full legal immunity are vested in the physician, without accountability. Futility policies have been discussed extensively in medical literature, and by commentators including on this blog.

In states which allow doctors to make futility judgments that overrule an individual’s decision for treatment, and in the absence of the individual’s signature or some type of independent oversight and enforcement, how can we ever be sure that a doctor’s signature on a POLST form reflects the person’s treatment choices rather than the physician’s?

Unfortunately the disability community has a lot of experience with devaluation by physicians and other health care providers, devaluation that leads to pressure to forego life-sustaining treatment. We aren’t impressed by empty platitudes and we won’t be getting on the POLST bandwagon anytime soon. – Diane Coleman

Disability Health Disparities Based on Negative Quality of Life Judgments Must Be Challenged

While national disability organizations work hard to influence the federal budget debates, painful Medicaid cuts are already being considered and implemented at the state level across the country. Getting disability advocates and issues to the table is a major challenge.

The Executive Director of the Center for Independence of the Disabled in New York just returned from vacation to the good news that she’s been appointed by Governor Andrew Cuomo to one of the workgroups assigned to report to New York’s Medicaid Redesign Team, specifically the Health Disparities Workgroup. Among other tasks:

This work group will advise the Department of Health (DOH) on initiatives, including establishment of reimbursement rates, to support providers' efforts to offer culturally competent care and undertake measures to address health disparities based on race, ethnicity, gender, age, disability, sexual orientation and gender expression. (Emphasis added.)

There is increasing recognition of health disparities impacting people with disabilities. In May 2009, the Disability Rights Education and Defense Fund (DREDF) issued a report, Improving Health and Access to Health Care for People with Disabilities, designed to address important causes of disability health disparity, the lack of accessibility and reasonable accommodation among health care providers:

Our recommendations are provided against this backdrop and focus specifically on:
• Enhancing implementation of federal disability rights laws as they relate to health care systems, facilities, services, and programs, including disease prevention, health promotion, and cultural competency…

DREDF also called for improved data collection on disability health disparities.

In the same month, DREDF joined numerous other disability organizations in a letter urging that disability health disparities be addressed in the context of health care reform:

Heathcare reform must end these health disparities by ensuring:

Access to affordable coverage for Americans with disabilities, including intellectual and developmental disabilities, without regard to pre-existing conditions, congenital impairments, or whether the intervention is habilitative or rehabilitative in nature; …

A delivery system prepared to provide appropriate, accessible, and equivalent care for individuals with disabilities at all levels of service;…

While provider accessibility is a recognized factor in disability health disparities, another cause of disability related disparities is more difficult to document: the denial of health care based on negative quality of life judgments. When it comes to racial and ethnic health disparities, providers’ racial prejudices have been assumed to play a role, but disability prejudices have received less attention. For example, it’s well documented that people with disabilities do not receive preventive services equal to those provided to nondisabled people, but the possibility that some physicians may have a “who cares” attitude about providing equal preventive services has rarely been explored. (See e.g. C. E. Drum et al., Recognizing and Responding to the Health Disparities of People with Disabilities, California Journal of Health Promotion 2005, Volume 3, Issue 3, 29-42.)

The discussion moved significantly forward in September 2009, when the presidentially appointed National Council on Disability (NCD) issued perhaps the most comprehensive report to date entitled “The Current State of Health Care for People with Disabilities.” NCD’s report included extensive interviews and analysis of the impact of negative and stereotyped health care provider attitudes, such as the following deadly example:

In one particularly troubling instance, a provider's value judgment about a patient with mental retardation led to a year-long delay in treatment for a life-threatening medical condition. The patient suffered from advanced breast cancer that required surgery, but her physician implied that due to her already low quality of life (owing to her disability), she did not merit the intervention, and her guardian did not want to make the decision to go forward without the physician's support. This woman reportedly died within a year, and there was concern that her death may have been precipitated by the delay in surgery.

In fact, some health care non-treatment decisions are even more explicitly based on provider quality of life judgments, and are expected or even intended to cause death, yet I have not found reference to them in the literature on disability health disparities. Three examples quickly come to mind.

Many will remember the infamous 1995 case of Sandra Jensen who was denied transplants due to Downs Syndrome until advocates fought back on her behalf. Unless disability advocates are able to weigh in during the formulation of transplant criteria and protocols, it appears unlikely that they will be non-discriminatory.

Another increasingly frequent scenario is the “rush to judgment” in response to a new brain injury. Some physicians are slapping “persistent vegetative state” diagnoses on people long before neurological literature would say it’s “appropriate”, and then using that diagnosis as an argument for withholding life-sustaining treatment. One such case involved a young girl, Haleigh Poutre. Physicians argued for withdrawing life support very shortly after a brain injury based on an allegedly certain poor prognosis, but court proceedings involving her abusive father delayed matters briefly and she woke up and went into rehabilitation.

We’re also concerned about how some physicians respond to new spinal cord injuries. A 31-year-old woman formerly on the staff of the Regional Center for Independent Living in Rochester, NY wrote “How I Didn’t Die” about her experiences when first injured at age 19. Doctors urged Terrie Lincoln’s parents to “pull the plug” of the ventilator that she needed, as it turned out, for five months post injury. When she woke up, they urged her the same way, asking if she would really want to live that way. Fortunately, these physicians were hesitant to overrule a determined family.

In all three cases, Sandra Jensen, Haleigh Poutre and Terrie Lincoln, the difference between life and death was an intervention that blocked the health care system from carrying out its devaluation of life with significant disability. Disability advocacy groups, court delays and feisty parents saved these three lives, but what about the people who are not spared the attitudes and trends we glimpsed in these cases?

In 2009, the New York Times Magazine featured an article by Princeton Professor Peter Singer that argued a both a need and a framework for health care rationing, which included anti-disability rhetoric:

If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life. (These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.

This is the basis of the quality-adjusted life-year, or QALY, a unit designed to enable us to compare the benefits achieved by different forms of health care.

Actually, bioethicists have gone a step beyond QALYs to DALYs or “disability-adjusted life-years.” As noted in the British Medical Journal, “…the DALY approach implicitly attaches lower value to life extending programmes for disabled people than to corresponding programmes for people without disability.” Arnesen, T. and Nord, E., The value of DALY life: problems with ethics and validity of disability adjusted life years, BMJ. 1999 November 27; 319(7222): 1423–1425.

There’s enough recognition of disability health disparities for disability rights advocates to muscle our way to the table where plans to address health disparities are being formulated at both national and state levels. Once there, I hope that advocates will broaden the demand for data gathering and policy change to include not only the health care behaviors that threaten our health, but also the health care decisions that are explicitly for the purpose of ending the lives of people with disabilities who are seen by many providers as worth-less. – Diane Coleman

Diane Coleman on WBAI "Largest Minority Radio Show" Tonight! (August 10)

Sorry for the late notice, but Diane Coleman will be on Largest Minority Radio Show on WBAI tonight.  The show starts at 9:00 pm ET.  I'm told she'll be in the first part of the show.  Here's the description of the show and how to listen in:

The next edition of The Largest Minority airs Wednesday, August 10, at 9 PM on WBAI New York, 99.5 FM. The program will feature Jim Wiseman, of United Spinal Association, speaking about the recent milestone 21st anniversary of the ADA. Also, we will hear from Diane Coleman from Not Dead Yet about some important developments. Stay tuned!

I'd recommend tuning in at 9:00 pm sharp and listen to the whole show.  It's always worth tuning into, including informed guests who engage in nonrushed discussions on issues of importance to all of us in the disability community.

Link to WBAI is here.

Click here tonight to listen live (multiple formats supported)

Like the idea of a disability-oriented show?  Like tonight's show?

If you're on Facebook, go the Largest Minority Radio Show page and "like" it.

For more info, visit the official page of the Largest Minority Radio Show.

Threats to Medicaid Are a Not Dead Yet Issue

In transitioning to full time work for Not Dead Yet, I’m bringing my last fifteen years of independent living and health care advocacy experience. I’ve served on a number of boards and committees related to achieving universal health care, protecting and improving health care access for people with disabilities, and reversing the institutional bias built into Medicaid long term care, aka long term services and supports.

It’s probably obvious to most that quality health care is generally important in helping people live well while managing serious chronic conditions, whether they are considered terminal or not. What may be less obvious is the role that long term care policy plays in how people feel about their lives, their relationships and their options.

The Oregon assisted suicide reports are at best thin and superficial, but the doctors who prescribe death-causing drugs indicate that 35 percent of the individuals had “feelings of being a burden.” That’s pretty much a long term care issue.

The infamous case of Kate Cheney makes this point painfully. Ms. Cheney got a lethal prescription in Oregon, in part at the urging of her caregiver daughter. However, she didn’t take the lethal dose until after her daughter put her in a nursing facility for a week so she could have respite from care-giving. Ms. Cheney was effectively given the “choice” of feeling like a burden, being confined in a nursing facility or dying sooner than she otherwise would.

While there are many aspects of long term care that disability rights advocates address (e.g. consumer direction, home care worker training, pay and benefits), the overwhelming majority of advocacy effort is focused on stopping the crushing civil rights violations of a system that is all too quick to shuttle people off to nursing facilities and institutions.

In the public discourse leading up to this week’s deal on the debt ceiling and budget deficit, senior groups kept Social Security and Medicare front and center, but Medicaid was not often mentioned. Over the years, I’ve learned that a surprising number of people mistakenly believe that Medicare covers long term care. But when the time comes that a person needs long term care, all but the well off in our society discover the crucial role of Medicaid in meeting this basic and very human need.

I was just on a national conference call about the “debt deal” and Medicaid, because Medicaid is only exempt from budget cuts if the soon-to-be-appointed Congressional “Super Committee” fails to act or if Congress rejects their plan. One of the conference call speakers said that in the upcoming “Super Committee” negotiations, there is a “bull’s eye” painted on Medicaid.

Moreover, the Super Committee will not just be crunching numbers, it will be writing Medicaid policy. In an aging society, it’s difficult to imagine how cuts to Medicaid would not amount to an unconscionable abandonment of seniors and people with disabilities who need long term care, and many of our family members who do what they can but need help to keep the family together. Whatever happens with the debt deal, we must find ways to stretch Medicaid dollars further to meet this growing need.

The leading disability rights group ADAPT has been pushing four proposals to reform Medicaid by reversing its institutional bias:

• Expand the use of home and community-based services.
• Demedicalize services, reducing over-reliance on skilled nursing for routine daily tasks.
• Expand consumer directed service options, reducing over-reliance on professionals.
• Reorganize services based on functional needs rather than age or diagnosis to reduce wasteful and duplicative bureaucracy.

It’s critical that we put these proposals squarely and forcefully before the Super Committee.

To do just that, ADAPT is spearheading a Rally for REAL Medicaid Reform in Washington, D.C. on September 21, 2011 at noon. Not Dead Yet is a Rally co-sponsor and we urge people to attend and help to boost turn out in every way possible. For more information, including materials and contacts to help organize folks from your state, go to http://www.adapt.org/main/medicaid_rally .

Before Not Dead Yet existed, in the late 1980’s, ADAPT spoke out in what we have come to call the “Give Me Liberty or Give Me Death” cases, in which men using ventilators sued for freedom from nursing facilities or, in the alternative, death (David Rivlin, Kenneth Bergstedt, Larry McAfee). ADAPT filed friend of the court briefs in some of those cases, arguing the right to liberty. Nevertheless, courts in state after state articulated what was then a new right to “pull the plug”, no questions asked, and completely ignored the plea these men made for freedom from institutions.

For the disability community, it is as clear now as it was then: threats to Medicaid, and the home and community-based services it supports, are a Not Dead Yet issue. – Diane Coleman

Update: "Live-Streamed" Assisted Suicide A Hoax

I wanted to report this earlier, but some health issues at home got in the way of a timelier post.  Last week, I wrote about billionaire Alki David's plans to live-stream the assisted suicide/euthanasia of a Russian cancer patient.

Well, there was a broadcast.  But it was an elaborate hoax.

The story is at TechExclusive.net:

The live assisted suicide that was portrayed to be broadcasted live on BattleCam.com, and made international media, turned out to be a fake promotion stunt. Owner of BattleCam.com promised to the media that he was showing a live assisted suicide on his website. Was it real? NO. Did many believe it was? Yes.

The site received more than 150k people who were all watching to see the ‘live assisted suicide’.

The video cut in, and people believed it was real. 30 seconds in to the video people were thinking, this isn’t real!? 30 seconds later, people knew it was nothing more than a publiscity stunt.

Alki then had a short talk. He claims the man who was supposed to be the brain cancer patient was simply his Boat captain, the supposed wife of the patient was his house keeper, and the doctors were real. The location and setting of the prank we pre-recorded in Greece.

So, it appears that this really was just a publicity stunt.  I'm not sure, in terms of average traffic to the site, if 150,000 is an impressive result or not.

Let's hope it's less than Mr. David was hoping for.  He could always give it a try again - and for real this time.  Would it go over well with the BattleCam audience?

I only watched a "video tour" of the site.  That short video featured a young guy setting his hair on fire, apparently winning a 500 dollar "prize" for doing so.  Another man announced he was really drunk and then drove a staple through a body part that should really be treated a lot more gently.

I leave it to others to figure out how well a "live" suicide would go over with an audience to a site like that.