Diane Coleman Presents Comments on Futility at July 25 Mtg of National Council on Disability

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Many apologies for the delays in getting this out.  Last week, there were many activities and events to mark the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  One of those events was a meeting of the National Council on Disability.  Here’s the description and info from last week’s press release announcing the NDLA Statement and Diane Coleman’s Comments to NCD:

Among the disability community activities taking place this week Washington, D.C., the National Council on Disability, and independent federally appointed body that advises the President, Congress and federal agencies on disability policies, held its quarterly meeting. During the meeting, Diane Coleman, Not Dead Yet’s President and CEO, provided both spoken and written public comments urging the Council to address the problem of negative quality-of-life judgments made by physicians to justify denial of life-sustaining care to some individuals who both require it and want it.

Coleman focused on a legislative remedy that developed in Oklahoma to prohibit such quality of life judgments, the Nondiscrimination in Treatment Act passed in May of this year, which states: “A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, and the provision of which is directed by the patient or [surrogate] . . . on the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”

Coleman told the Council, “I like the sound of that,” but noted that the provision has already received “some pretty intense criticism.”

One critic is Professor Thaddeus Pope, who wrote about the Oklahoma law in a piece entitled “Defending Disability Discrimination.” Pope gave an example of an institutionalized person with mental illness who allegedly would not be able to handle his medications and other transplant care requirements to be eligible for a transplant. Coleman and other disability advocates challenge these sorts of claims, which assume that the necessary support services do not exist. Pope argued that the courts have a long history of permitting disability discrimination regarding life-sustaining treatment.

“I suspect that Pope is right about what the courts have been doing, and it constitutes a life-threatening problem for people with disabilities,” Coleman told the Council, urging them to take a leadership role in addressing this concern.

Below is the embedded video of Diane Coleman’s comments to NCD.  The full transcript of her spoken comments is here.  A longer written submission is available here.

 

Statement of the National Disability Leadership Alliance on the 23rd Anniversary of the Signing of the Americans with Disabilities Act

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For those who are unfamiliar with the National Disability Leadership Alliance (NDLA), here’s the description from the website:

National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities.

NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.  The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Association of Programs for Rural Independent Living, the Autistic Self Advocacy Network, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, and the United Spinal Association.

Originally created as the Justice For All Action Network, over the 2011 Martin Luther King Jr. holiday weekend, members of the steering committee held a retreat to determine the future of the network.  The group formalized the network, adopted the new name and tagline, and adopted operational guidelines.

As indicated in the description above, NDY is one of the national organizations that leads the alliance.

We’re proud of our part in the Alliance and in the Statement on the 23rd Anniversary of the Signing of the Americans with Disabilities Act:

This week, people with disabilities across the country are celebrating the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  This was the first comprehensive federal civil rights statute protecting the rights of people with disabilities.  The ADA established that people with disabilities have equal opportunity in employment, state and local government, places of public accommodation, and telecommunications.

Despite the ADA’s promise of equal opportunity for people with disabilities, it is clear that more work must be done so that people with disabilities are to be valued as equal citizens and welcomed in all aspects of American life.  Today, far too many people with disabilities are forced to live in institutions, forced to receive unwanted treatment, denied programs and services, or to be paid less than minimum wage.  On a regular basis, our civil, constitutional, and parental rights are disregarded or stripped away.

Our lives and expertise are not valued equally – with dire consequences.  Healthcare professionals refuse to communicate with us, overrule the decisions we make or those made by our authorized surrogates; law enforcement and the courts too often fail to treat those who kill people with disabilities the same as those who kill nondisabled people, particularly when an individual has been killed by a family member.

Our very freedom of movement can be deprived and our rights stripped from us on the basis of arbitrary and capricious decisions about our capacity.  Furthermore, the voices of people with disabilities are frequently ignored in favor of parent and provider organizations that speak about us, without us.  Policymakers have ignored our expertise about our own lives, issues and desires, instead of allowing providers, academics and family members to speak for us even though we may have very different priorities and interests.  For those in the disability community from diverse communities, the discrimination that they face as people with disabilities is compounded by issues of race, gender, religious affiliation and sexual orientation.

The statement includes a Call To Action, asserting how we in the disability community must work together to assert our rights.  Below are the action items that will be of the most interest to people passionate about NDY’s issues, but I urge people to read all the action items, as the are all vitally important.

• We must end our broken and arbitrary system of guardianship and substituted decision making, in accordance with Article 12 of the UN Convention on the Rights of Persons with Disabilities. For too long, the legal capacity of people with disabilities who require assistance with their finances and/or healthcare or who have expressed desires inconsistent with those possessed by their family members have been permanently stripped and denied to them. By putting in place a stronger infrastructure for supported decision-making, our community can facilitate the provision of support where people require it while not requiring a loss of legal capacity as a pre-condition for receiving such support.  Additionally, we must work to restore the legal capacity and rights of the many people with disabilities who currently suffer under a system of guardianship with no acknowledgement of, or recognition for, the preferences of people with disabilities independent of their guardians.

• We must assure that the lives of people with disabilities of all ages are equally valued, protected, cared for and preserved as the lives of nondisabled people.  Healthcare providers must always communicate with persons with disabilities including through interpreters and other auxiliary aids and services to ensure equivalent healthcare services.  Healthcare providers must never use perceived quality of life judgments, the cost of care, or other factors to overrule the decision to receive life-sustaining healthcare made by a person with a disability or their authorized surrogate.  Healthcare providers must also zealously provide suicide prevention services for people with disabilities of all ages that are equivalent to the suicide prevention services they provide for nondisabled people.  As such, we should never encourage or provide the means for any individual to commit suicide.

• We must assure that violence in any form against people with disabilities is not tolerated, and the prosecution and sentencing for homicides of people with disabilities must be treated in the same manner as homicides of people without disabilities.  With the recent addition of disability as a protected class under the federal hate crimes statute, federal investigators and prosecutors must work to bring cases against those who take the lives of people with disabilities because of their disability, particularly when the perpetrators are a member of the victim’s own family.  We must assure that adequate funding is provided to support programs that assist people with disabilities who are victims of crime, including training for first responders, the creation of accessible shelters, and victim rights programs. We must ensure that the justice system is accessible to people with disabilities, using the ADA as a tool to support restorative justice.  We must develop strong working relationships between the disability community and the justice system to address violence against people with disabilities.

Please stay tuned – there is a lot happening these days.

Diane Coleman in New Jersey Star-Ledger: The dangerous ‘help’ of assisted suicide

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NDY president and CEO Diane Coleman wrote an op-ed that was published in yesterday’s New Jersey Star-Ledger.  Here’s the first half of the op-ed, titled “The dangerous ‘help’ of assisted suicide“:

Proponents of legal assisted suicide for the terminally ill frequently claim that the opposing views of disability organizations aren’t relevant.

Nevertheless, although people with disabilities aren’t usually terminally ill, the terminally ill are almost always disabled. This is one of many reasons our perspective may offer some insights on this complex issue.

People with disabilities and chronic conditions live on the front lines of the health care system that serves (and, sadly, often underserves) dying people. One might view us as the “canaries in the coal mine,” alerting others to dangers we see first.

Assisted suicide advocates paint themselves as “compassionate progressives,” fighting for freedom against the religious right. That simplistic script ignores inconvenient truths that are all too familiar to disability advocates, such as:

• Predictions that someone will die in six months are often wrong;

• People who want to die usually have treatable depression and/or need better palliative care;

• Pressures to cut health care costs in the current political climate make this the wrong time to add doctor-prescribed suicide to the “treatment” options;

• Abuse of elders and people with disabilities is a growing but often undetected problem, making coercion virtually impossible to identify or prevent.

It’s not the proponents’ good intentions but the language of assisted suicide laws that legislators need to consider.

Please read the rest of the op-ed here – and leave a comment (you can register with you Facebook account).

Press Release: Not Dead Yet Provides Video and Written Comments on POLST to Institute of Medicine’s Committee on Approaching Death

Our News & Commentary Blog

For PRWeb’s pdf version of the Press Release, click here.  The public comments described in the release are available in a five minute video, the text of the video, and full written comments with citations.

Summary:  Not Dead Yet President and CEO Diane Coleman has submitted video and written public comments to the Institute of Medicine’s Committee on Approaching Death for its July 22-23 meeting being held in Houston, Texas. The public comments raise concerns about the implementation of Physician Orders for Life-Sustaining Treatment (POLST).

Houston, TX (PRWEB) July 23, 2013

Not Dead Yet President and CEO Diane Coleman has submitted video and written public comments to the Institute of Medicine’s (IOM) Committee on Approaching Death for its July 22-23 meeting being held at the Texas Children’s Hospital in Houston. The public comments raise concerns about the implementation of Physician Orders for Life-Sustaining Treatment (POLST). Not Dead Yet has twice previously submitted comments to the Committee, previously called the Committee on Transforming End-of-Life Care.

According to the IOM website, “The IOM Committee on Approaching Death: Addressing Key End of Life Issues will hold its third meeting on July 22 and 23, 2013 in Houston, Texas. There will be a public session on July 22 featuring panel sessions on ethics and spirituality. The public session on July 23 will focus on empirical and legal issues surrounding POLST (Physician Orders for Life-Sustaining Treatment).”

Public comments are limited to approximately five minutes, so Coleman has submitted a video focusing on two of the concerns raised in her longer written comments. The video comments address the dangerous and inappropriate use of POLST with people who are disabled but not terminally ill, and the bias against life-sustaining technologies conveyed in the way the POLST forms are presented by health care providers.

In her spoken comments, Coleman informed the Committee of a recent article in the Pew Trusts’ Stateline about POLST (New End-of-Life Measure Quietly Sweeps the Nation, June 20, 2013) which quoted her and reflected her concerns as follows:

“’How do we know the POLST medical order actually reflects the desires of the individual?’ [We worry] that depending on how POLSTs are presented, they can make life-sustaining treatments—such as the use of feeding tubes—seem unbearable, even though many disabled people are able to live full lives because of them.”

In her more extensive written comments, Coleman called attention to documented evidence of problems from various states that have implemented POLST, including a Delaware state order discontinuing the use of POLST, and a February 2013 report from Disability Rights California entitled, The Deadly Failure of a Hospital to Follow a Patient’s Decisions About his Medical Care.

Coleman also addressed POLST provisions contained in a new federal bill called the “Personalize Your Care Act” that was introduced on March 14, 2013, by Representative Earl Blumenauer (D-Oregon):

“[The bill] would provide Medicare funding for physicians to have a conversation with their patients about “end-of-life care.” If done well, we agree that such a conversation can be a good thing, and I object to the ‘death panel’ accusations that obstructed rational discussion of such a provision in the Affordable Care Act.

“But there’s another section of the new bill, H.R. 1173, that would provide grants to promote POLST across the country. If we can conclude anything from the current level of information we have about how POLST is being implemented in the states that have it, it’s that many questions remain unanswered, strong reasons for concern exist, and federal funding to promote POLST is premature. The POLST provisions of H.R. 1173 should be amended to fund independent research to answer the serious questions and concerns that many have raised. That’s what the Institute of Medicine and this Committee should support.”

Marilyn Golden in Sacramento Bee: Assisted Suicide Fraught with Consequences

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On Sunday, July 14th, the Sacramento Bee published an excellent op-ed by Marilyn Golden countering a previously published piece promoting assisted suicide.  Here’s an excerpt from her response essay, titled “Assisted suicide fraught with consequences“:

Efforts to legalize assisted suicide have been attempted in California three times, each time failing due to broad bipartisan opposition that included major disability rights organizations, independent living groups, doctors, and civil rights and faith-based groups. Each bill failed because of precarious loopholes, dangerous provisions and insufficient oversight.

In Oregon and Washington, two states where assisted suicide is legal, there is virtually no oversight or regulatory authority. Just Google names such as Barbara Wagner, Kate Cheney or Randy Stroup and you will find tragic stories behind legalizing assisted suicide.

Please read the rest of her op-ed here.

Read more here: http://www.sacbee.com/2013/07/14/5563639/assisted-suicide-fraught-with.html#storylink=cpy