Disability Rights Iowa Accuses Governor of Abandoning Those in Nursing Homes to Greater Abuse and Neglect

abuse, Back Door Euthanasia, deregulation, disability rights iowa, iowa, neglect, nursing homes, Our News & Commentary Blog, politics, Tea Party

There’s a really disturbing story out of Iowa that could be the tip of the iceberg in terms of what could be playing out nationally in the current economic and political climate.

Clark Kauffman, of the Des Moines Register, writes that Group says Branstad actions cause nursing home deaths: 

An organization that advocates for disabled Iowans says decisions made by Gov. Terry Branstad are causing the state’s nursing home residents to suffer and die.

Disability Rights Iowa, which is part of a national network of advocacy groups established by Congress, published a scathing, open letter to Branstad on Wednesday, questioning the governor’s pursuit of a less punitive method of regulating Iowa’s nursing homes.

Sylvia Piper, the organization’s executive director, told Branstad in the letter that because of his “political choices, people are suffering and dying on a regular basis in Iowa’s nursing homes.” Piper invited Branstad to join her on a two-day tour of care facilities.

“I want you to see what I have seen,” she wrote. “I want you to witness up close the effects of abuse and neglect. I wager that less than 24 hours after our return, if you are even remotely human, you will double the number of nursing home inspectors on your staff.”

The open letter that Kauffman cites is located on the website for Disability Rights Iowa.  While Kauffman recounts the complaints in Ms. Piper’s accurately, the actual language she uses is much more harsh and blunt than Kauffman’s column:

Terry Branstad believes nursing home residents, many who have witnessed or experienced abuse or neglect, no longer need anyone to protect them. Rod Roberts, director of the Iowa Department of Inspections and Appeals, gets his marching orders directly from Branstad. They both agree that no inspectors are needed; the nursing homes should be left to police themselves, much the way Wall Street polices itself.

Branstad has a lucrative arrangement with the nursing home lobby. They give his campaign tens of thousands of dollars, he helps them run under the radar by removing those who would hold them accountable. Under this egregious arrangement, nursing home residents are left alone and helpless in an environment historically notorious for abuse and neglect.

When Roberts fired 10 nursing home inspectors last year (under the guise of budget cutting), the Iowa Legislature appropriated $640,000 to reinstate these positions. Legislators understood that oversight is critical when politics threatens to corrupt the system designed to protect Iowa’s most vulnerable citizens. Roberts took the money, but used it for purposes other than rehiring nursing home inspectors.

This isn’t your “normal” story of abuse and neglect in nursing homes. (In which case we tend to oppose giving more money to those facilities and argue that the best remedy for institutional abuse and neglect is to provide people support they need in their own homes in the community.)

Nope – this story is about dismantling the barely adequate monitoring system that exists so that nursing facilities won’t have to fear being held accountable any more.

It doesn’t take a rocket scientist – or a policy analyst – to predict that having less oversight and accountability will result in a decline in the quality of care – including increased incidents of abuse, neglect and preventable deaths.  But, at the same time, the state’s newest reports on nursing facilities – based on less oversight – will make them look better than ever.

But I fear that’s what we’ll see more and more of in the current climate in which older and disabled people are seen as drains on the economy. Match that up to a philosophy that says that business needs less “regulatory burden” and you have a perfect storm for this alarming scenario to be played out in many states across the country.  –Stephen Drake

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

emergency management, fema, Inc., Our News & Commentary Blog, Paul Timmons, Portlight Strategies, red cross, susan dooha
 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

assisted suicide, barbara coombs lee, cnn, Compassion & Choices, Conflation and Con jobs, media coverage, national council on disability, ncd, Oregon, Our News & Commentary Blog

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

emergency management, fema, Hurricane Irene, New York City, oem, Our News & Commentary Blog, susan dooha

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

advance directives, legislation, life-ending decisions, life-sustaining treatment, new jersey, Our News & Commentary Blog, policy, POLST

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