ADAPT of Texas members protested on June 28th in front of St. David’s Hospital in Austin where they refused treatment and starved to death Michael Hickson, a black disabled man who died on June 11th, 2020.
ADAPT of Texas Protest At Hospital That Killed Michael Hickson
ADAPT of Texas reported that Michael Hickson was a quadriplegic with a brain injury who was refused treatment for COVID 19 that he acquired in a local nursing home.
A pro-life media outlet reported on Mr. Hickson’s story, including a video of his recovery as he progressed over time, and an audio recording of a doctor explaining the hospital’s decision not to treat him for COVID-19.
. . . Hickson became a quadriplegic in May 2017 after going into sudden cardiac arrest while driving his wife Melissa to work. He received CPR but suffered an anoxic brain injury from the loss of oxygen to his brain. Since that time, he has been conscious and alert, responding to jokes, laughing, shaking his head, singing, and puckering his lips when his wife asked for a kiss over FaceTime. See the video below:
Then in 2020, he contracted COVID-19 from a staff member in his nursing home and developed pneumonia. He was hospitalized at St. David’s South Austin Medical Center, but doctors there refused to treat him, allowing him to die.
In a recorded conversation between the doctor and Melissa, she was told that he would not receive treatment due to his disability:
Doctor: So as of right now, his quality of life — he doesn’t have much of one.
Melissa: What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?
Doctor: Correct.
A five-minute recording of the conversation is here:
The doctor seems to invoke the infamous Texas futility law, aka the “10-day-rule”, which allows doctors to involuntarily withdraw life-sustaining treatment after giving ten days notice. But it’s not clear how long Mr. Hickson was in the hospital. There’s no indication that even the minimal requirements of the futility law were met. Even if they used a hospital “ethics” committee, it’s highly unlikely that it included any disability rights advocates. (A problem we can all work to address – nothing about us without us!)
There’s also no indication that Austin hospitals had entered a period of shortages that would have triggered COVID-19 triage policies. Even if resource shortages existed in early June, the reasons given for withholding treatment are blatantly and illegally discriminatory under recent federal HHS Office of Civil Rights COVID triage rulings. The latest OCR settlement with the state of Tennessee makes it crystal clear that the Texas hospital’s decision leading to Mr. Hickson’s death violated federal standards.
Based on the information we have, it seems that the hospital used COVID triage and Texas futility policies in combination to try to “justify” a killing that neither policy could do alone. NDY questions the relative lack of media interest in this outrageous killing of a Black disabled man, and the hospital’s cold and cavalier dismissal of his life as unworthy of care. But for the video and audio recordings, this injustice would likely have remained hidden. Our hearts go out to his family for their terrible loss.
Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.
COVID-19 continues to rage through America, but not many of us outside the media and disability rights and justice groups are talking about an overlooked population – residents of nursing facilities and institutions for disabled people, who are dying of COVID-19.
To date, more than 51,000 residents and employees of nursing homes and long-term care facilities have died. That’s more than 40 percent of the total death toll in the United States. These are only the numbers they tell us.
In April, 17 deceased people were discovered in a morgue in a facility in Andover, NJ, after authorities received a tip. Those 17 were among 68 recent deaths at the facility, Andover Subacute and Rehabilitation Center I and II. Two nurses also died. Of those who died, 26 people had tested positive for the virus. People are still dying in that facility.
A high school friend, whose relative died in May in a Georgia nursing home, was told that 142 people contracted COVID-19 in that facility. 100, including her relative, died.
These are the numbers we know. What of the numbers we don’t know? And what’s being done to protect residents and staff?
Because relatives and loved ones in nursing facilities have been denied visitors due to COVID-19, it’s almost impossible to find out what’s happening. Family members sometimes learn well after the fact that their loved one has died.
Nursing homes want immunity from civil suits when their residents die of COVID-19, and several states, including New York, have given it, making it impossible to investigate violations and neglect, or pursue justice when people have died.
So, what, if anything, is being done to help and protect folks in nursing facilities, institutions and other congregate facilities?
Disability justice activists and independent living centers have been working on ways to safely transition folks to community settings. Chicago ADAPT, along with other local disability organizations, had a meeting with Illinois State administrators and department heads on emergency evacuations, or relocations. Some of their demands on transition were:
I. TRANSITIONS
Governor Pritzker to implement an executive order to:
1) Transition facility residents to hotels/temporary independent housing that is less likely to put residents and workers at risk of infection
2) Reassign overflow nurses to these non‐institutional settings rather than to institutions
Governor Pritzker to reinforce the Colbert/Williams [Olmstead class action] Decrees by:
Utilizing the Strike Force to expedite the decrees
Establishing a consumer-led body to work with the Strike Force on transitions to provide essential input
State of Illinois to require that MCOs [managed care organization] provide community-based consumers the same or broader waivers as those provided to institutional settings
Peter Grosz, of Chicago ADAPT, says that while Pritzker’s staff seemed sympathetic at the meeting, they received this response on May 21st. Note, this is the response regarding transitions, not the entire response to all of their demands, which overall, were unhelpful.
“While the Olmstead Decrees continue to remain a priority for the entire Administration, we have assessed that IDHS and its service providers are unable to conduct safe transitions while providing the typical, robust level of community-based supports during this pandemic. IDHS will continue to work tirelessly to plan around this pandemic in the interest of Class Members, including providing virtual services.
“IDHS also remains committed to ensuring that Class Members, regardless of where
they are currently residing, maintain their status in Consent Decree programming and access to the same entitlements. IDHS is preparing for a complete re-vamping of the service delivery system for Class Members for the time it becomes safe to facilitate transitions.”
“As you know, people in institutions are no different from people not in institutions except that they are in institutions,” said Peter Grosz. “Illinois has not hesitated to transition homeless and front-line workers to temporary facilities equipped with nurses and other supports. In the eyes of the state, the label alone of nursing home resident or psych facility resident or prisoner diminishes an individual’s rights to appropriate safeguards and services against all form of injustices and natural disasters, including at this time, pandemics.”
Members of ADAPT participated in a townhall meeting with other disabled stakeholders in response to COVID-19 in nursing facilities. Anaya Robinson, of Atlantis Community, an independent living center in Denver, Colorado, detailed their plan of relocating people to a local hotel and pairing them with attendants who would quarantine with them. Atlantis Community is hiring currently homeless individuals who receive attendant services training while quarantined with the former nursing home resident, and housing when that person is then transitioned into their own place. Misty Dion, of Roads to Freedom Center for Independent Living, in Williamsport, Pennsylvania, cited a similar program of emergency relocation. They’ve teamed up with restaurants to provide free meals to those in their program. The Center for Disability Rights, in Rochester, New York, has a relocation program quite similar to Denver’s; they train homeless folks in attendant services training through their consumer directed attendant services program, while they quarantine in a local hotel with their supervisors [individuals needing consumer-directed services].
I spoke with three individuals in a Chicago nursing home, Lyndsay, Ernest, and Gina. Their facility has 15 people who tested positive for COVID-19. I wanted to know how they felt about living there during this pandemic.
“It’s very scary, like a time bomb” said Ernest. “They aren’t telling us anything. Its like we’re in a dark room. We have 15 cases of COVID-19 here, but they only told us about 4 people. We’ve been quarantined here for 4 months, but every day, they’re bringing in new staff from the outside. Some of them wear masks, some of them don’t.”
“We have become each other’s support,” said Gina. “The nurses they bring in don’t have the training to do stuff we need, like wound care, so we help each other. There’s been 4 doctors here since January, actually, 3 doctors and a physician’s assistant. I saw a doctor two weeks ago. He just stuck his head in the door to say hi. That’s all.”
“My transition person disappeared,” said Lyndsay. “She said she couldn’t do this anymore. I’m trying to find out what I can do. This is a matter of life and death now, with COVID-19. My transition has just stopped and nobody’s doing anything. I’m waiting for housing and nobody’s telling me anything.”
Therein lies another issue. People’s Olmstead rights are being violated. Olmstead v LC is the Supreme Court decision affirming the right of people in nursing facilities and other institutions, like psychiatric hospitals, to live in the community with the services and supports they need to remain independent. According to the decision, “Unnecessary institutionalization is discrimination under the Americans with Disabilities Act.” Each state is supposed to have an Olmstead plan to transition folks from institutions to their own homes and receive services “in the most integrated setting possible.”
While governmental agencies are saying that people in nursing homes are too medically fragile to be transitioned to the community, many disabled folks reject that claim. Today, on the 21st anniversary of the Olmstead decision, they are still fighting for the right to live at home. You would think with COVID-19 on the rampage in nursing facilities, there would be concerted efforts nationwide to get people out of those places, to safety, then into their own homes. How many more people in nursing homes and other institutions for disabled folks have to get sick and/or die from COVID-19 before we do anything?
The murder of George Floyd by police, and the hard work of Black Lives Matter and other anti-racist groups, have focused the nation’s attention on systemic racism and injustice to an extent not seen in decades. This heinous act followed the racist killings in May of Ahmaud Aubrey, Dreasjon Reed and Breonna Taylor, and many thousands more dating back centuries.
From the time Whites stole the lives of Blacks in Africa and forced them to labor for America’s economy, white supremacy and toxic racism have been part of the fabric of our country. Whites have lied about it, inventing false rationales for the way things are, never taking responsibility for that hypocrisy or accepting the duty to meaningfully address the wrongs done.
We see the consequences of long-standing systemic racism in the issues Not Dead Yet works on every day. Racial disparities in healthcare, so well covered by NDY’s Anita Cameron, have resulted in COVID-19 fatalities disproportionately impacting Blacks and people of color. Though slavery is no longer legal, Blacks are still America’s essential workers and are still dying because of it.
Not Dead Yet is in solidarity with members of our community, including the disability community, who are fighting the deadly consequences of racism. We recognize that we are part of a society that grants unearned privilege to some, while leaving many of us behind. We reaffirm our commitment to work to break down these systems of oppression so that, finally, every one of us can share equally in the liberty and justice our country has promised.
For Immediate Release: June 2, 2020
Contact: John B. Kelly 617-952-3302, SecondThoughtsKelly@Gmail.com, @2ndThoughtsMA
Bill Legalizing Assisted Suicide Remains Dangerous, Targets the Vulnerable
Second Thoughts Massachusetts issues the following statement in opposition to the favorable report given by the state legislature’s Joint Committee on Public Health to Bill S.2745/H.4782, legislation that would legalize assisted suicide in Massachusetts.
John Kelly
“I’m amazed and disappointed that as a deadly virus is stalking and killing older, ill, and disabled people, and systemic racism and healthcare disparities lead to disproportionate deaths of Black people, the Public Health Committee decides now would be the time to further endanger the same groups of people. Assisted suicide legislation sends a message of ‘better dead than disabled’ while completely immunizing doctors, heirs, and stressed caregivers who can encourage or even engineer a person’s death without fear of prosecution,” said Second Thoughts Director John B. Kelly.
“It is wrong to move a bill at a time when those who will be harmed are on lockdown due to COVID-19, depriving us of the opportunity to fully address in person this threat to our health and well-being,” Kelly continued.
Anita Cameron, Director of Minority Outreach for Not Dead Yet, said “I am utterly disgusted that as COVID-19 ravages the Black community due to the results of racial disparities in healthcare, the Public Health Committee has decided to try to slip this bill through. COVID-19 has disproportionately affected the Black community; we are dying at frightening rates. This bill promotes death over life, and by pushing it, the legislature is sending a clear message to us Blacks that we are burdens and should die by suicide.”
Diane Coleman, Not Dead Yet’s President and CEO, said “The doctors who decide who’s eligible for assisted suicide are the same doctors who have been perfectly comfortable putting older, ill and disabled people at the back of the line for receiving COVID-19 treatments. Why should anyone think they will move us to the front of the line for other life-saving treatments if assisted suicide is legal?”
Five months ago, Suffolk Superior court Judge Mary K. Ames in Kligler, et al. v. Healey, et al. ruled against any state constitutional right for assisted suicide, holding that at the point of a patient ingesting the lethal drugs, they would be vulnerable to improper persuasion. “In such a situation, there is a greater risk that temporary anger, depression, a misunderstanding of one’s prognosis, ignorance of alternatives, financial considerations, strain on family members or significant others, or improper persuasion may impact the decision.”
“The Massachusetts legislature should heed this warning by the court. If assisted suicide is legal, some people’s lives will be ended without their consent, through insurance denials, mistakes, and abuse. No safeguards have ever been enacted, or even proposed, that can prevent this outcome which can never be undone once it is put into effect,” Kelly concluded.
Second Thoughts Massachusetts is a group of disability rights advocates opposed to the legalization of assisted suicide. We testified against the bill [formerly S.1208] at the hearing in June of 2019 and held a well-attended legislative briefing a few days after. It is the state affiliate of Not Dead Yet, the national grassroots group opposed to assisted suicide and life and death discrimination against disabled people.
Thanks to the Partnership for Inclusive Disaster Strategies for alerting disability advocates to proposed federal rule changes that would make it easier to put disabled people of all ages into nursing “homes” and other facilities, as well as make it harder for them to move back out to the community. The deadline for comments is May 20 at 11:59 p.m.
NDY’s comment is below, with most of the text borrowed from the NDRN template comment, which explains the rule changes.
Public Comment By Not Dead Yet Re Proposed Medicaid PASRR Changes
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.
We are writing to comment on CMS’ proposed changes to Preadmission Screening and Resident Review (PASRR). PASRR is an important tool to keep people with disabilities from being unnecessarily placed in nursing facilities and help them transition back to the community. Having strong PASRR rules is especially important now, with the rampant outbreaks and deaths from COVID-19 happening in nursing facilities around the country.
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. But because of COVID-19, now more than ever it becomes a death sentence.
We oppose the proposed changes to the PASRR rule that would make it easier for people to be admitted to nursing facilities and harder for people in nursing facilities to return to the community. First, the proposed rule would allow states to avoid screening and evaluation for many people before admitting them to a nursing facility, leading to admission of people who could instead be served in the community. The rule also would limit the services that nursing facilities have to provide once someone is admitted. Without all of the services they need, people will lose skills and not learn new skills that would make it easier for them to transition back to their communities. Finally, the rule would allow states to stop working on the transition of a person back to the community if the person does not have a community option currently available, even if everyone agrees the person could be best served in the community. The rule should instead require the person’s case manager to continue to work to identify community options.
All of these changes will mean more people will be admitted to or remain stuck in nursing facilities who don’t need to be. This not only violates the right of people with disabilities to community services, but is especially dangerous during this COVID-19 pandemic.
We ask you to please substantially revise the proposed rule to remove any changes that would make it easier for people with disabilities to be admitted to or to remain in nursing homes unnecessarily. We would also like an opportunity to comment on the new rule once revised. The health and safety of people with disabilities of all ages around the country depends on it.
