NDY Challenges NYS Medicaid Proposal to Save Money By Steering People to Choose Death Over Living With Disability

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Not Dead Yet, the Center for Disability Rights, and 11 other NY based disability organizations, submitted public comments on the New York State Medicaid Delivery System Reform Incentive Payment Program (DSRIP) on May 28, 2014, alleging that one of the proposed projects would fund Medicaid providers to save money by steering people to choose death over living with disability.  NY is offering grants to Medicaid “safety net” providers with a high proportion of Medicaid patients to reduce unnecessary hospitalizations, and encouraging applicants to implement three possible palliative care projects along with other projects on various aspects of healthcare.

One of the three palliative care projects is entitled “Conversation Ready,” and promotes advance care planning as a means of reducing “unnecessary” hospitalizations.  For this to be effective, people on Medicaid would apparently be encouraged to refuse life-sustaining treatment as part of their advance care plan.

A recent Pew Research study found that:

. . . [A]bout two-thirds of whites (65%) say they would want to be allowed to die if they had an incurable disease and were suffering a great deal of pain, compared with 26% who say they would ask their doctors to do everything possible to save their lives in such circumstances. By contrast, a majority of blacks (61%) and about half of Hispanics (55%) say they would tell their doctors to do everything possible to save their lives if they had an incurable disease and were suffering a great deal of pain.  [Views on End-of-Life Medical Treatments, November 21, 2013]

The “Conversation Ready” project is focused on safety net providers and includes the following requirement:

Identify care coordinators to work with community based and faith based partners to facilitate End of Life planning in a socially/belief system compatible manner to increase patients (sic) acceptance of program. [Pg. 57, DSRIP Toolkit]

Giving provider networks financial rewards for being successful in this effort allows them to reduce hospitalizations and healthcare costs by encouraging individuals to “choose” death over treatment. The method by which the “Conversation Ready” Project proposes to influence people are set forth in The Conversation Project, a website listed on page 57 of the state toolkit for grant applicants.

The Conversation Project makes it clear that the fear of living with a disability is what drives the seemingly innocuous decision-making process designed to steer people away from receiving care.

The website, found at www.theconversationproject.org, reads in part:

You’ll see that this isn’t really about dying—it’s about figuring out how you want to live, till the very end.

“What matters to me is _____.”

Think about the things that are most important to you. What do you value most? What can you not imagine living without?

Understandably, individuals do not want to lose their abilities due to an accident, illness, or age.  Yet disability is a natural part of the human experience and people adapt.  It is unacceptable that a government program will encourage people to choose death over disability to prevent “unnecessary” hospitalization and save money.

The Conversation Project goes even further in specifically eliciting fears of long term disability and translating them into decisions to forego live-saving treatment:

What to talk about:

Are there circumstances that you would consider worse than death? (Long-term need of a breathing machine or feeding tube, not being able to recognize your loved ones)

What kinds of aggressive treatment would you want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube)

When would it be okay to shift from a focus on curative care to a focus on comfort care alone?

There is no indication that the need for such interventions could be either short term or permanent. There is no information on the tens of thousands of disabled individuals who are currently living a fulfilling life while permanently using these devices.

The role of the healthcare professional should be to provide thorough information and support that assists people to adapt to disability. The medical community should never leverage common societal prejudices against disability to persuade people to forego healthcare in order to save money.

The Conversation Project website also holds out the prospect of life in a nursing facility as the only choice a disabled person might have if they become too disabled.  But what about Olmstead and the New York adopted Community First Choice Option that establish the right to home and community based services under Medicaid?  The state should never promote death through refusal of healthcare, rather than home and community based services, as the alternative to institutional placement.

Our conclusion and final recommendation was that the “Conversation Ready” Project must be removed from the Toolkit of projects applicants could select due to the: a) transparent effort to steer safety net community members to sign advance directives that decline lifesaving healthcare and b) extreme bias against people living with disabilities.

On the other hand, we supported the other two palliative care projects and made three recommendations to strengthen those programs:

  • Ensure the provision of information and services relating to the Olmstead decision, Money Follows the Person, and the Community First Choice Option to patients and their families.
  • Ensure the provision of independent living information and services to patients and their families.
  • Require the proposed “quality committees” to include representatives from disability and aging advocacy organizations.

The full comment letter is posted on the NDY website under “Public Policy” activities.

The Conversation Project provides an example of how common fears and prejudices about life with disability are used to steer people to decline healthcare and choose death, but it’s far from the only example.  Those who push these ideas and approaches are usually well meaning, but are ill informed about disability in all the typical ways.  Nevertheless, when New York Medicaid officials openly link this objectionable practice to saving money, we can’t be silent.  In fact, more disability advocates are needed to challenge this anti-disability approach to advance care planning across the country.  We’ve been excluded from “the conversation” for far too long.

P.S.  Thanks to the NY disability organizations that joined in these comments:  Center for Disability Rights, New York Association on Independent Living, Center for Independence of the Disabled, New York,  Westchester Disabled On the Move Inc., Southern Tier Independence Center, Independent Living Center of the Hudson Valley, Independent Living, Inc., Rockland Independent Living Center, AIM Independent Living Center, SKIP of New York, Inc., Harlem Independent Living Center, and Community Service Center of Greater Williamsburg.

 

 

 

 

Press Release: Not Dead Yet, Autistic Self Advocacy Network and 12 Other Disability Groups File Friend-of-Court Brief in Wisconsin Case Alleging Medical Care Withheld Due to Disability

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[Editor’s Note:  For a pdf formatted version of this press release, and link to the friend-of-the-court brief in Word format, go here.]

On Friday May 23, the Autistic Self Advocacy Network, Not Dead Yet, and 12 other disability rights organizations filed an amicus brief in a case challenging the University of Wisconsin Hospital Center’s alleged practice of counseling families of people with developmental disabilities to withhold care for treatable but potentially life-threatening medical conditions, such as pneumonia. (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No. 2014 AP 135, Wisconsin Court of Appeals, District IV.)

According to the amended complaint (Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al., Case No 09-CV-2340, filed January 8, 2010, Wis. Circuit Court of Dane County), one thirteen-year-old child died of pneumonia and one adult was denied care after University of Wisconsin Hospital physicians advised families to withdraw antibiotics, nutrition, and hydration. When the child’s regular caregivers objected to withdrawing treatment, UWHC physicians allegedly encouraged the family to have him transferred to the University of Wisconsin Hospital, where he was taken off of antibiotics, nutrition, and hydration, and transferred to hospice care. He died the next day.

In both cases, Disability Rights Wisconsin claimed, doctors allegedly based their determinations on their patients’ supposedly low quality of life as individuals with disabilities, and acted without the approval of the hospital ethics committee.

“We need the court to recognize that people with disabilities shouldn’t be refused care simply because a doctor doesn’t think their lives are worth living,” said ASAN’s Director of Public Policy, Samantha Crane, who authored the brief. “Often, this sort of judgment serves as cover for discriminatory denials of care.”

ASAN’s amicus brief was authored in collaboration with Not Dead Yet, a disability rights organization that advocates against legalization of assisted suicide, euthanasia, and non-voluntary denial of lifesaving treatment for people with disabilities, The brief argues that UWHC’s policies are emblematic of pervasive, nationwide medical discrimination against people with disabilities and that legal protections are necessary to protect vulnerable individuals from deadly denials of care.

“The concern that many of us with lifelong severe disabilities have is that children with disabilities are not receiving the same legal protection as nondisabled children,” said Diane Coleman, Not Dead Yet’s President and CEO. “A disabled child with parents who prefer to withhold medical care that would save the child, or who succumb to pressure from hospital doctors to withhold care, should not be permitted to deprive their child of a future just because the parents and doctor harbor common prejudices against life with disability.”

The trial court initially dismissed Disability Rights Wisconsin’s claim that UWHC doctors had violated patients’ rights under the constitutions of either Wisconsin or the United States, leading to this appeal.

Under Wisconsin law, parents of nondisabled children are required to provide medical care when necessary to save the child’s life. In 2013, the Wisconsin Supreme Court upheld the homicide convictions of parents who had failed to seek medical attention for their child, who died of untreated diabetes. (Wisconsin v. Neumann, 832 N.W.2d 560 (Wis. 2013).)

UWHC Ethics Committee Chair Norman Fost, who is also a defendant in the lawsuit, has taken multiple controversial positions on the rights of children with disabilities, including his defense of the use of electric shocks to modify the behavior of children and adults with disabilities and his support of the “Ashley Treatment,” which involves removing the reproductive organs and artificially stunting the growth of children with developmental disabilities. (See Douglas Diekema & Norman Fost (2010), Ashley Revisited: A Response to the Critics, American Journal of Bioethics 10(1):30-44;  Transcript, U.S. Food and Drugs Administration, Neurological Devices Panel (April 24, 2014).)

ADAPT, American Association of People with Disabilities, American Council of the Blind, Association for Autistic Community, Association of Programs for Rural Independent Living, Autism Women’s Network, National Association of the Deaf, National Council on Independent Living, National Disability Rights Network, Quality Trust for Individuals With Disabilities, United Spinal Association, and the Wisconsin Board for People With Developmental Disabilities also joined the amicus brief.

National Council on Disability Will Consider Proposal to Address Health Care Decisions Policies that Threaten the Lives of People With Disabilities

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The National Council on Disability met on May 6th at the Ed Roberts Campus in San Francisco.  This is a presidentially appointed Council that advises the Administration on disability policy.  The Council always offers opportunities for public comment, and NDY has been asking NCD to help lead efforts to address abuses in health care decisions that end the lives of people with disabilities, such as futility policies and unlawful surrogate decisions to deny life-sustaining care.  NDY’s previous comments to NCD on this subject are here, here (video) and here.

After I provided the following public comment Tuesday evening, one of the Council members, Ari Ne’eman of the Autistic Self Advocacy Network, articulated his concerns about these issues as well.  NCD’s Chair, Jeff Rosen, then directed staff to work with interested Council members to develop a proposal for addressing these concerns that the Council could consider.  This is a very important step, and reason for hope that there is more to come. 

Public Comments to the National Council on Disability

May 6, 2014 

“End the UNEthics Committees”

or “Nothing About Us Without Us!”

I’m speaking on behalf of Not Dead Yet, and requesting NCD’s leadership to help us address civil rights violations that people with disabilities encounter when third parties make decisions without our consent to withhold medical treatment that we need to survive.  These decisions are often made with the involvement and approval of hospital ethics consultants and ethics committees.

In fact, this week, Not Dead Yet is joining the Autistic Self Advocacy Network in a friend of the court brief in a Wisconsin case in which a 13-year-old boy with intellectual disabilities was denied routine care for treatable pneumonia and died when his parents followed the recommendations of Dr. Norman Fost after he provided an ethics consultation, recommendations that, according to the Wisconsin protection and advocacy agency, violated state law.

In 1992, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) mandated the establishment of ethics committees.  By the year 2000, over 95 percent of community hospitals had established a clinical ethics committee.

Ethics committees are a prevalent means of giving the illusion of due process in health care decision-making by hospitals and other facilities.  Yet there are virtually no accepted standards for ethics committee composition, procedures or decision-making guidelines.  In some states, these committees have the authority to determine whether life-sustaining treatment can be withdrawn against the will of the person or their surrogate decision maker, often making determinations based on the degree of disability and perceived quality of life.

Only a few states have ethics committee statutes, but they typically require physicians, nurses, social workers and hospital administrators to be members, while community representatives or patient representatives are optional.

Not Dead Yet advocates in Texas have proposed that at least one quarter of ethics committee members not be staff of the hospital, and that ethics committees must include members of both disability and aging advocacy organizations.  While additional procedural protections are needed as well, the principle of “nothing about us without us” provides an excellent first step.

We urge NCD to assist in developing model legislation and policies regarding ethics committees, and to assist us in establishing a dialogue with appropriate federal agencies and associations of state level policy makers to address these issues further.

ADAPT Wins Meeting with Leadership Conference on Civil Rights to Address Disconnect Between Disability Rights and Broader Civil Rights Movement

ADAPT, Our News & Commentary Blog

ADAPT took hundreds of disability rights advocates in Washington, D.C. this week to a surprising advocacy destination today:  the offices of the Leadership Conference on Civil Rights.  ADAPT asked their help to address the “disconnect” between the disability rights community and the broader civil rights movement.  We’re still awaiting the results and next steps, but among the examples of the disconnect given in ADAPT’s press release is legalization of assisted suicide:

“Progressives promote assisted suicide without recognizing a discriminatory, double standard where non-disabled people get suicide prevention and people with disabilities are provided suicide assistance.”

The full release is not yet posted online, but came to ADAPT advocates via email.  It’s public, so I’m sharing it with you below.  ADAPT has long opposed legalization of assisted suicide.  Pew researchers also found that people of color tend to oppose it, so there’s every reason to think that we can find common ground on this.  But it probably came as a surprise to the Leadership Conference to see it brought up today.  Thanks to ADAPT for putting it on their radar!

05/06/2014 PRESS ALERT:

WHO:     ADAPT
WHAT:    ADAPT DEMANDS THAT THE LEADERSHIP CONFERENCE ON CIVIL AND HUMAN RIGHTS FACILITATE A PROCESS FOR THE
INTEGRATION OF DISABILITY ISSUES INTO THE BROADER CIVIL RIGHTS MOVEMENT
WHERE: 1629 K Street NW 10th Floor Washington, DC 20006
WHEN:    Tuesday, May 6, 2014

 

200 DISABILITY RIGHTS ACTIVISTS ARE DEMANDING THAT THE LEADERSHIP CONFERENCE INITIATE A PROCESS TO BRING ADAPT’S LEADERS TOGETHER WITH OTHER CIVIL RIGHTS ORGANIZATIONS TO ADDRESS ISSUES WHERE THESE ORGANIZATIONS HAVE ACTED AT CROSS PURPOSES WITH THE RIGHTS AND NEEDS OF PERSONS WITH DISABILITIES.

 

ADAPT has become increasingly concerned about a growing disconnect between the disability rights movement and the broader civil rights communities.

“People and groups that should be our natural allies have in fact taken positions that undercut the basic civil and human rights of persons with disabilities,” said Bruce Darling.

 

Examples of such disregard for our rights include:

  • Progressive and civil rights organizations strongly promoted changes in federal labor rules that undercut the right of and opportunities for people with disabilities to live in the community;

 

  • Unions have fought against community integration efforts by the disability community in order to preserve union jobs in the institutions, even using fear tactics promoting the idea that integrating people with disabilities into the community is dangerous.

 

  • Progressives promote assisted suicide without recognizing a discriminatory, double standard where non-disabled people get suicide prevention and people with disabilities are provided suicide assistance.

 

  • In New York at the behest of the nurse’s union, Deborah Glick – a prominent LGBT member of the NYS Assembly – opposed and derailed changes to the state’s Nurse Practice Act that would have given people with disabilities needed assistance with health related tasks from attendants in the community.

 

  • In Texas, the disconnect between the disability rights movement and other civil rights movements was emphasized by the recent failure to include disability rights advocates or issues in the civil rights conference organized by the LBJ Library.

 

Accordingly, ADAPT demands that the Leadership Conference work with us to initiate a process to bring ADAPT’s leaders together with other civil rights organizations to find a way to address this critical problem.

 

This was the third of four days of directed action by ADAPT in Washington DC.

***30***

Disability Rights Leadership Institute on Bioethics: Advancing the Disability Rights Perspective on Bioethics Issues

Amy Hasbrouck, ari ne'eman, ASAN, Autistic Self-Advocacy Network, bill peace, bioethics, Bob Kafka, dredf, Liz Carr, national council on independent living, NDRN, Norm Kunc, Our News & Commentary Blog, Toujours Vivant-Not Dead Yet, , , , , ,

Months of work came to fruition on April 25 – 26, 2014 at the Crystal City Marriott in Arlington, VA.  Conference planning experts told us to expect a 10% no show rate, but out of our final count of 68 who signed up to attend (we had initially expected about 50), only 3 missed it.  That’s a clue about the amazing level of participation we had for the first ever Disability Rights Leadership Institute on Bioethics (DRLIB).

Before talking about the program, I first want to thank our sponsors:  National Disability Leadership Alliance, Autistic Self Advocacy Network, Disability Rights Education and Defense Fund, Euthanasia Prevention Coalition, National Council on Independent Living and, of course, Not Dead Yet.

All of DRLIB’s sponsors and participants also want to thank our generous supporters:  Aging With Dignity, Association of Programs for Rural Independent Living, Yoshiko Dart, Gail Ludwig and Clarissa Kripke, Michigan Disability Rights Coalition, Montanans Against Assisted Suicide, Patients’ Rights Action Fund and United Spinal.

I also want to thank the Center for Disability Rights for designing and printing our conference programs and sending their extraordinary executive administrative assistant Linda Taylor to manage our check in desk, and TRIPIL’s Kathleen Kleinmann, DREDF’s Rhonda Neuhaus and disability bioethicist Joe Stramondo for volunteering there too.

Friday was the focus for NDY and DREDF, addressing issues around assisted suicide and withholding and withdrawal of life-sustaining treatment.  I was the first presenter, on the latter subject, starting out with a dilemma:

I really feel that we need a lively opening and those of you who know me realize, as I do, that I’m a bit too wonky for that.  Throughout the Institute I’ll be turning to so many of you for help, so I want to start off with a brilliant piece by Norm Kunc.

Norm was there, and his “Euthanasia Blues” provided a rollicking start.

My wonky part was described this way in the program:  Medical discrimination against people with disabilities, sometimes resulting in death through the nonconsensual withholding of life sustaining treatment, has been a longstanding and increasing concern among disability advocates, especially under the threat of healthcare budget cuts and rationing. Over the last two decades, health care decisions laws have been amended to increase the likelihood that people will sign advance directives and POLST forms refusing life sustaining treatment, and that surrogate decision makers will refuse treatment on behalf of relatives without advance directives. There are also concerns about organ transplant professionals denying transplant eligibility based on disability, as well as pushing for withdrawal of life support from disabled people in order to harvest their organs for others. Most states have “futile care” laws and policies allowing physicians to withhold life-sustaining treatment over the expressed objection of the individual or their surrogate. Evidence of passive euthanasia in violation of the civil rights of people with disabilities, such as that described in the National Disability Rights Network report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights” (May 2012), will be explored, as well as potential avenues for addressing these violations.

I showed a video of a bad POLST conversation between a doctor and patient.  The DRLIB audience readily discerned the doctor’s bias against life-sustaining treatment, but sadly he’s getting an award from the California POLST group for the quality of his work.  But my favorite part was passing on a community organizing idea from ADAPT’s Bob Kafka:  We should all try to get people with disabilities from our local advocacy groups appointed to hospital ethics committees.  It’s a “Nothing About Us Without Us” campaign, aka End the UNEthics Committees!

DREDF’s Marilyn Golden came next, talking about the disability rights opposition to legalization of assisted suicide.  She noted the disability community history with assisted suicide and the inherent disability discrimination found in assisted suicide proposals. Next, she discussed many public policy concerns with the legalization of assisted suicide, including how assisted suicide laws are a deadly mix with the broken, profit-driven US health care system; the significant risks of abuse; the inadequacy of safeguards; the lack of oversight; and how legal alternatives exist for people who are dying in pain.  Marilyn was also very astute in exploring the political landscape for assisted suicide laws in the US today, the importance of working in coalitions to defeat assisted suicide proposals, and the diverse nature of those coalitions.

What we learned during a later discussion is that she changed at least one attendee’s mind who now opposes legalization of assisted suicide.

Marilyn’s remarks were actually delivered in two parts, broken up by a delightful lunch and a wonderful keynote by Liz Carr, a disabled comedian, actor in a BBC drama series, and NDY activist from the United Kingdom.

Liz described her ‘hobby’ as “working with Not Dead Yet UK to fight against the further legalisation of assisted suicide.”  It would be impossible to capture how entertaining Liz was in the text of a blog, but just to give you an idea from her remarks:

I’m currently writing ‘Assisted Suicide – The Musical’.  This show is my response to the mainstream media onslaught of semi naked disabled people who are having their teeth brushed, their hair washed whilst usually hanging pitifully in a hoist as classical music plays in the background and a sombre voiced narrator tells the audience how awful their life is.  What’s the new term for this?  Expiration porn? Objectifying us for the titillation of the observer?   Making the viewer feel better about their life?  Perpetuating the already engrained view that people like that, people like me, people like us, would be better off dead.  I wrote Assisted Suicide The Musical in the belief that a witty showtune will do as much to counter that view as any op-ed. 

When we get the Power Points posted on the DRLIB website, you’ll be able to see some very funny slides with the dancing nurses and disabled person dangling awkwardly in a “hoist.”  But Liz had a lot more to discuss from her Euthanasia Road Trip, a BBC broadcast project that took her from the Netherlands to Oregon and beyond to explore the issues with people on both sides of the debate.  Her insights and passion were a tremendous contribution to DRLIB.

Later, we heard about International Perspectives in Europe and Canada on Assisted Suicide and Euthanasia.  Well traveled Canadian Nic Steenhout of Vivre dans la Dignité (Living with Dignity) discussed the situation in Europe, including developments in the Netherlands and Belgium where active euthanasia is legal.  Amy Hasbrouck of Toujours Vivant / Not Dead Yet Canada talked about disability advocacy to defeat proposals that would legalize assisted suicide and active euthanasia in Canada.  People with disabilities, including those whose conditions are no where near terminal, are openly targeted in these proposals.

After a long first day, we were then treated to a fascinating movie called “Fixed – The Science Fiction of Human Enhancement” by Regan Brashear.

Saturday’s presentations were led by the Autistic Self Advocacy Network.  The day opened with a tribute to renowned bioethicist Adrienne Asch, who recently passed away after an illustrious career, given by ASAN’s Ari Ne’eman, John Pare of the National Federation of the Blind and Marcy Darnovsky of the Center for Genetics and Society.

The day’s presentations focused on “beginning of life” issues.  Marcy Darnovsky and DREDF’s Sylvia Yee enlightened the group about Key Issues in Reproductive Technologies.  ASAN’s Director of Public Policy insightfully addressed the problems with “Wrongful Birth/Wrongful Life” lawsuits.

Both days included two concurrent discussion groups (four in total) led by experts who could have readily presented fully on the topics, but gave their time to facilitate valuable dialogue that elicited experiences, insights, ideas and strategies from all DRLIB participants.

  • Advocacy & Media – Marilyn Golden, Ari Ne’eman and Diane Coleman
  • Fighting the Bioethics War – William Peace (Syracuse University Jeannette Watson Distinguished Visiting Professor), Joseph Stramondo (PhD Candidate, Michigan State University), Marcy Darnovsky  (Center for Genetics and Society – CGS)
  • Addressing Ethical Dilemmas Posed by Genetic Technologies – Ari Ne’eman and Samantha Crane
  • Media and Violence Against People With Disabilities – Lawrence Carter-Long (National Council on Disability), Zoe Gross (Autistic Self-Advocacy Network – ASAN)

This led to more feedback and exchange, and ASAN’s Julia Bascom facilitated an excellent wrap up and next steps discussion.

We’ll be putting the Power Points and more on the DRLIB conference website in the near future.  Perhaps most importantly, everyone committed to further communication, expanded networking, and more DRLIB.