Carol Cleigh Sutton – DNR: Choice or Medical Murder?

advance directives, Carol Cleigh Sutton, DNR, Do-Not-Resuscitate, Health care decision-making, life-ending decisions, life-sustaining treatment, medical discrimination, Our News & Commentary Blog, treatment withholding, , , , ,

A friend asked if I knew how many people have been medically killed since Covid-19. My answer is that there is no way to know. We know about Michael Hickson and  we’re just learning about Sarah McSweeney and perhaps many others from a recent NPR investigation.  However, when relatives agree, or at least don’t vociferously disagree, medical killing happens quietly, behind closed doors.
Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

I’m old enough to remember when advance directives were just getting started (late 1960s) and were highly touted as a matter of choice. The supposition was that this would increase individual choice. We were strongly and repeatedly assured that we could always make the choice to receive all medical care possible and no one would be coerced into signing up for an early death.

Recent reports from the UK and the US indicate that my experience with the medical system pressuring, even forcing DNR orders is not even unusual, much less unique.

When my husband, also a wheelchair user, approached his 80th birthday, it began. Every interaction with the medical system began with their attempting to talk us into placing a DNR in his records. In one case, they went ahead and placed it without permission, or even consultation. Though this was clearly illegal and was reversed when I found out and raised the roof our next contact started the pressure all over again.

Two years ago, I flew to California to be with by brother-in-law whom the hospital believed would not live through the night. Almost the moment I arrived, they started applying the strongest pressure I’ve ever encountered to try to get a DNR from us, even indicating that refusing the DNR wouldn’t matter because they would not perform CPR anyway. In other words, they had already placed a clearly illegal, unwanted de-facto DNR on him.

Both of these men were conscious and competent and both had indicated that they did NOT want a DNR. My role was to advocate for what they wanted. Doing so, I was vilified and repeatedly told that I was unrealistic, stubborn and unable to accept reality. So much for ‘choice.’ Both of these men had health insurance, both were military veterans, one was over 80 and a long-term wheelchair user, the other not yet 60 and had only recently become disabled himself, though his wife is a long-term wheelchair user. Both were white-appearing with Native American ancestry. Both were highly verbal, capable of expressing their wishes. If the medical system was so determined to make them dead that they were willing to take clearly illegal measures, what chance do obviously minority, uninsured, non-verbal and poor people have?

All of that was before Covid-19.

Audrey Ignatoff: Let’s Win the War Against Bullying of Disabled People!

ableism, abuse, Adult Protective Services, bullying, legislation, Our News & Commentary Blog, , ,

An important and groundbreaking bill, NJ A4519 was introduced into the New Jersey Legislature by Representative Daniel Benson, and cosponsored by Representatives Valerie Huttle and Anthony Verrelli. This bill, “AN ACT concerning the bullying of disabled persons”, will extend the statute of limitations for disabled minors and adults who have been bullied, abused, exploited, and neglected.

Minors will have up to 37 years and those over 18 will have up to 7 years after they realize that damage was done to them for any of the above actions. This is a civil action and actions against vulnerable adults may also be reported to adult protective services and to law enforcement.

Undoubtedly, this will provide a new layer of protection for the disabled and, hopefully, similar legislation will be introduced in other states. Not only will this type of legislation allow victims to be compensated for damage done to them but will also act as a deterrent against future abuses.

Bullying has emerged as a major public health problem displayed in various forms such as verbal, physical and psychological aggression. The effects of childhood bullying can cause problems such as depression, anxiety, PTSD, sleep problems, low grades, physical problems, substance abuse, and even suicide.  These effects can reach into adulthood and have a profound effect upon a person’s development and life.

It is estimated that fully 33 percent of all students have been bullied with 25 percent of them experiencing bullying daily. From 37 to 45 percent of adults have been bullied, many in the workplace. These figures increase even more in the disabled population.

Common forms of bullying are name calling such as “re***d” and “cripple,” threats, physical abuse, starting rumors, and social media attacks, etc. Bullying behavior is a civil rights issue and is particularly damaging when childhood bullying follows a person into adulthood and can interfere with many aspects of their life, including social, psychological, academic, and work. Often, the losses experienced cannot be undone, but this legislation will help to compensate the victims.

We urge people in NJ to write to their state legislators to support this bill. People outside NJ are urged to introduce it in other states as well. And please link to this article on disability websites and social media. If this bill becomes law, it will be a major victory in the war against bullying of  disabled people!

Second Thoughts Connecticut Press Release: Assisted Suicide Is Bad Medicine

"death with dignity", aid in dying, assisted suicide, Cathy Ludlum, Connecticut, Lisa Blumberg, Our News & Commentary Blog, press release, Second Thoughts Connecticut, Stephen Mendelsohn, suicide prevention, , , ,

FOR IMMEDIATE RELEASE

Contact:                                                                   
Cathy Ludlum                         860-649-7110                               cathyludlum@cox.net
Stephen Mendelsohn              860-827-8003 (best after 5:30)     smendelsohn5845@att.net

Second Thoughts Connecticut
Website:   https://sites.google.com/site/secondthoughtsconnecticut/
Facebook: https://www.facebook.com/SecondThoughtsConnecticut
Twitter:     https://twitter.com/2ndThoughtsCT

Assisted Suicide Is Bad Medicine.
How Can Legislators Represent Us If They Cannot Talk to Us?

January 11, 2021 (Manchester, CT) – People with disabilities fear for their lives during the pandemic, and like everyone else must socially distance.  At the same time, they are increasingly concerned that assisted suicide legislation—which they also see as a threat to their lives—will be introduced during the 2021 session.

In previous years, the grassroots disability rights group, Second Thoughts Connecticut, has launched an energetic protest against these dangerous bills.  Members have started the session by leaving informational flyers for every member of the Connecticut General Assembly and the Governor.  They have sponsored press conferences and held lobby days at the Capitol.  Perhaps most importantly, they have met with legislators one-on-one or in small groups, and come out in force to participate in public hearings.

Things are very different during the pandemic.

With legislators primarily working from home, there is no opportunity to set up appointments at the Legislative Office Building or drop in to talk with legislators or their aides.  In the past, aides’ names and email addresses were listed on the webpage of each legislator.  Not this year.  Legislators receive a huge amount of email, and without aides to help dig through it, not everything gets looked at or responded to.

Members of Second Thoughts Connecticut started contacting key legislators in early December with almost no response.  To date, repeated requests to set up Zoom meetings with various legislators regarding the problems inherent in assisted suicide laws have been met with little or no response, and just one meeting has been scheduled.

Time is of the essence.

On Friday, January 15, the Public Health Committee will start identifying bills to bring to a public hearing.  Yes, interested people may watch the proceedings on YouTube, but critical elements will be missing.  There will be no opportunity to buttonhole legislators, or to show our concern by being present in the audience.

“How can our legislators represent us if they cannot talk to us?” asked Second Thoughts member Lisa Blumberg.  “Access to our elected officials is how our democracy works.”

Cathy Ludlum of Second Thoughts Connecticut offered, “People form opinions about assisted suicide based on what they know.  If they see it only as a civil right, and are never told about all the things that can go wrong—from misdiagnosis, incorrect or uncertain prognosis, coercion and abuse; to problems with the suicide drugs themselves—how can they make an informed decision?”

She added, “And this is a BIG decision.  If assisted suicide passes, it will forever change the way healthcare is provided. At a time when we are already concerned about disparities in healthcare, it will adversely affect people’s lives, especially those of us who are already societally devalued.”

Second Thoughts Connecticut member Stephen Mendelsohn said, “Assisted suicide legislation codifies lethal disability discrimination into law.  Some people will get suicide prevention and others suicide assistance, and the difference will be based on their disability status.”

Mendelsohn further explained, “Even the so-called safeguards of ‘six months,’ ‘terminally ill,’ ‘mentally competent,’ and ‘self-administer’ discriminate on the basis of disability and are vulnerable to court challenge.  This would lead to expansion to widespread euthanasia.  Assisted suicide would also conflict with the State of Connecticut Suicide Prevention Plan 2020-2025, which acknowledges the right of disabled people to equal suicide prevention services.”

Lisa Blumberg went on to say, “Assisted suicide is a very complex issue.  Passions run high on both sides, as we saw by the 12-hour public hearings of previous years.  This is not the time to make this decision because there is no way people can meet to fully discuss the ins and outs.”

Second Thoughts Connecticut is a grassroots organization of people with disabilities and allies who oppose the legalization of physician-assisted suicide.

NDY Files Public Comment On Federal Healthcare Interim Final Rule In Response To COVID

COVID-19, healthcare rationing, HHS, long term services and supports, Medicaid, Medicare, Our News & Commentary Blog, public comment, , , ,

NDY is grateful to disability rights attorney Kathryn Carroll for her assistance in filing a public comment on the [CMS-9912-IFC] Center for Medicare and Medicaid Services Interim Final Rule: Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency. Excerpts are below and, to read the whole comment, go here.

January 4, 2021

Seema Verma, Administrator
Centers for Medicare & Medicaid Services
Department of Health and Human Services
Attention: CMS-9912-IFC
P.O. Box 8016
Baltimore, MD 21244-8016

RE:      Comments on CMS-9912-IFC

Center for Medicare and Medicaid Services Interim Final Rule: Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency

Dear Administrator Verma:

Not Dead Yet appreciates the opportunity to submit comments on the Centers for Medicare and Medicaid Services (CMS) Interim Final Rule “Additional Policy and Regulatory Revisions in Response to the COVID-19 Public Health Emergency”. Not Dead Yet is a national grassroots disability rights organization led by disabled people, advocating for nondiscrimination in health care. We support people with disabilities’ equal rights to life-sustaining treatment. We oppose assisted suicide laws as a deadly form of discrimination. We support people with disabilities’ right to live in the community and not be forced into nursing homes and other institutions.

Medicaid provides necessary healthcare coverage to poor and disabled people, and is the primary funder of long-term services and supports (LTSS) required by older, disabled, and chronically ill people to live our daily lives. Home- and community-based services (HCBS) provided by Medicaid are the difference between disabled individuals being able to enjoy life in and as part of the community and segregation in institutional settings without choice and freedom.

Not Dead Yet advocates for nondiscrimination in healthcare; disabled people, especially those with multiple marginalized identities, face discrimination and bias by medical professionals and the healthcare industry at large. During a public health emergency, we are at even greater risk of being denied life-preserving or life-sustaining treatment through triage and crisis standards of care policies. Crisis standards of care based on discriminatory evaluations of disabled lives are pervasive.

Furthermore, disabled people who would be denied treatment under triage or crisis standards of care are being left out of vaccine distribution plans.[1]

Based on the overwhelming reliance on Medicaid for essential healthcare services including LTSS, the importance of HCBS to fulfilling the civil right of disabled people to not be institutionalized, the need for sufficient healthcare access to prevent disabled people from needing to seek care where we would be triaged, and the need for equitable access to the COVID-19 vaccine, Not Dead Yet strongly opposes the Interim Final Rule (IFR) allowing significant cuts to Medicaid funding and coverage.

The FFCRA correctly protected Medicaid beneficiaries.

The Families First Coronavirus Response Act (FFCRA), signed into law on March 18, includes an option for states to receive enhanced federal Medicaid funding. In exchange for the additional funds, states must agree to comply with maintenance of effort (MOE) protections. These protections help ensure individuals are able to get and stay covered during the crisis and receive needed services. The FFCRA includes an explicit requirement to preserve enrollee’s existing benefits – both their enrollment in Medicaid overall, and the services for which they have been eligible. At a time of such turmoil, Congress chose to protect enrollees and ensure access to services by maintaining the “status quo.”

In a reversal of CMS’s stated policy from March to October 2020, this IFR would now allow states to impose numerous types of coverage restrictions for individuals who are enrolled in Medicaid, including reduced benefits; reduced amount, duration, and scope of services; increased cost-sharing; and reduced post-eligibility income. The IFR will also result in terminations for some individuals who should not be terminated. We oppose these revisions to the MOE, which are inconsistent with the FFCRA and will result in harm for Medicaid enrollees. We also oppose allowing states to circumvent required transparency procedures for 1332 waivers and receive enhanced funding despite refusing to cover COVID-19 vaccination for some Medicaid enrollees. We recommend that CMS withdraw these provisions.

Reduction of Optional Benefits

This rule gives states sweeping authority to reduce optional Medicaid benefits; cut the amount, duration and scope of benefits; increase utilization management; increase cost-sharing; and reduce post-eligibility income – all with no consequences for their enhanced matching funds under the FFCRA. These changes contravene the letter and intent of the statute, and will result in significant harm for enrollees.

Optional Medicaid benefits include essential services like physical and occupational therapy, dental and vision services, and home and community-based services. After the previous economic downturn in 2008, many states made significant cuts to each of these services. Additional cuts at the state level are threatened as states grapple with the economic consequences of the pandemic.[2] Cuts to these services will cause significant harm.

While Not Dead Yet is generally opposed to the reduction of optional Medicaid benefits, we focus in particular on HCBS. HCBS benefits under Medicaid are optional and yet are essential for older, disabled and chronically ill people to exercise our preference and our civil right to not be institutionalized under the U.S. Supreme Court’s 1999 Olmsteddecision, which found that the unjustified institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act.[3] Forcing older, ill and disabled people into nursing facilities is always a civil rights violation, always a threat to an individual’s health and well-being, exposing them to well-documented risks of abuse and neglect. Not only are individuals in congregate settings of all types at greater risk of contracting illnesses like COVID-19, but reports and investigations of abuse and neglect are less likely to take place as access to facilities is limited under coronavirus-related restrictions. Because of COVID-19, now more than ever institutionalization becomes a death sentence.[4] . . .

To read the whole comment, go here.

References:

[1] See our comments on the Discussion Draft of the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine from the Committee on Equitable Allocation of Vaccine for the Novel Coronavirus, National Academies of Sciences, Engineering, and Medicine. New York’s vaccination plan, for example, contemplate providing vaccines to residents of nursing ”homes” and other congregate facilities, and home care workers. However, it does not contemplate individuals who might qualify for a nursing facility level of care but are living in the community with HCBS supports. See https://covid19vaccine.health.ny.gov/phased-distribution-vaccine#phase-1a.

[2] For example, New York made significant cuts to Medicaid in the State budget on April 2, 2020. Those cuts are described here: http://www.wnylc.com/health/news/85/#summary.

[3] See generally Kaiser Commission on Medicaid and the Uninsured, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid:  15 Years After the Supreme Court’s Olmstead Decision (June 2014), available at https://www.kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years-after-the-supreme-courts-olmstead-decision/.

[4] As of December 4, 2020, the New York Times reported that 38% of coronavirus-related deaths in the U.S. are linked to nursing facilities. https://www.nytimes.com/interactive/2020/us/coronavirus-nursing-homes.html.

NDY In Solidarity: Speaking Out Against Racism

Anita Cameron, disability rights, inciting violence, media coverage, Our News & Commentary Blog, racism,

NDY’s Director of Minority Outreach Anita Cameron is often interviewed by both disability and mainstream press. She has a long history of activism on behalf of disability rights, especially in her decades of work with ADAPT to get lifts on buses as well as major increases in home and community-based services that help older and disabled people stay out of nursing homes. Media outlets often contact her as a spokesperson about that history.

Since Anita joined NDY’s staff in 2017, media have also contacted her about NDY issues, especially during 2020 concerning COVID crisis standards of care.

When articles quoting Anita don’t include NDY issues, NDY doesn’t typically mention them in this blog. We don’t get comments about them. An example would be a recent Time magazine article. But this week, apparently in response to that article, NDY received a comment that is horrific and cannot be ignored.

This comment was submitted on a blog featuring Anita’s October 2nd testimony at ADAPT’s virtual People’s Hearing on home and community based long term services and supports:

“The USA needs an all out race war and n***** wh***s like you need to be hanging from trees!”

This is an outrageous call to bring lynching back! It descends to the grotesque depths of human capacity for hatred and violence. And it’s one of too many comments NDY and Anita have received in recent days. There have also been many Facebook comments and Anita Cameron has reported receiving death threats by direct message.

I know there are people out there who will want to know more, trying to find some way to shift some blame to Anita for becoming a target of racial slurs and death threats. When Time contacted Anita about being interviewed, she was told the article would be about disability representation more broadly and not all about Helen Keller. Her only statement about Helen Keller – “I don’t have a perspective on Helen Keller. She’s just another, despite disabilities, privileged white person” – is simple fact. Keller’s family was well off.

NDY will continue to work in solidarity with the disability rights and broader community to combat racism. We raise our voices to support Anita Cameron and all who have experienced racial injustice in all its forms.

NDY condemns these outrageous comments and the social/political climate that gives them any form of permission to be expressed. They are unacceptable. They must not be tolerated. Whenever racism rears it’s ugly head, many say this isn’t who we are, this isn’t our country. But it has been from the beginning. We must acknowledge this and then work harder to end it.