ADAPT of Texas has issued an Independence Day announcement that disability advocates are holding a vigil at St. David’s South Austin Medical Center to support the family of Michael Hickson, a 46-year old Black man with disabilities who died after being denied COVID-19 treatment. Not Dead Yet applauds ADAPT of Texas’ demand for “A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community,” and a meeting with Charles Laird, CEO of the St. David’s facility.
Mr. Hickson’s wife and widow, Melissa Hickson, has recorded a compelling video concerning the hospital’s denial of care for her husband based on negative quality of life judgments about his disability.
Mrs. Hickson has also provided other recordings of her husband’s recovery and statements made to her by a St. David’s doctor expressing blatant and unlawful discrimination. Links to these recordings are includes in an earlier NDY article.
ADAPT’s July 4th Press Advisory and Statement of Demands follow below.
*****PRESS ADVISORY ******
SUBJECT: Disability Independence and Life Itself Challenged because of COVID 19 rationing. Michael Hickson’s death Outrages ADAPT of Texas
For information:
Nicky – 512 736 4814
Sophia – 512 924 8449
ADAPT of Texas advocates and supporters will be at the Entrance of St. David’s South Austin Medical 901 West Ben White Blvd on Sat, July 4th at 6:30pm. Advocates will do a Vigil to support the family of Michael Hickson.
Attached are the demands of ADAPT of Texas.
Currently Texas has no guidance on the rationing of healthcare.
Recently a quadriplegic Michael Hickson died under circumstances that may have resulted from rationing services because of his disability and being tested positive with COVID 19.
This has outraged the ADAPT of Texas Community.
WE DEMAND:
A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community;
Charles Laird, CEO of St. David’s South Austin Medical Center meet with members of the ADAPT of Texas Community.
A number of state and national disability groups had complained that Tennessee’s crisis standards of care (CSC) “would unlawfully disqualify individuals with advanced neuromuscular disease, metastatic cancer, traumatic brain injury, dementia, and other disabilities from use of a ventilator in times of scarcity.”
The release describes the key provisions of the revised policy as follows:
Clarified that resource-intensity and duration of need on the basis of age or disability should not be used as criteria for the allocation or re-allocation of scarce medical resources. This protects patients who require additional treatment resources due to their age or disability from automatically being given a lower priority to receive life-saving care;
Removed language permitting the use of a patient’s long-term life expectancy as a factor in the allocation and re-allocation of scarce medical resources, instead indicating that providers should consider only risk of imminent mortality;
Added language stating that reasonable modifications to the use of the state’s primary instrument for assessing likelihood of short-term survival should be made when necessary for accurate use with patients with underlying disabilities. Such reasonable modifications ensure that people with disabilities are evaluated based on their actual mortality risk, not disability-related characteristics unrelated to their likelihood of survival;
Removed categorical exclusion criteria that prohibited people with disabilities from receiving care on the basis of their diagnosis, and required individualized assessments of patients based on the best available objective medical evidence; and
Incorporated language stating that hospitals should not re-allocate personal ventilators brought by a patient to an acute care facility to continue pre-existing personal use with respect to a disability. Under this language, long term ventilator users will be protected from having a ventilator they take with them into a hospital setting taken from them to be given to someone else.
“We’re pleased the state of Tennessee has committed itself to a policy of nondiscrimination during the COVID-19 pandemic,” stressed Claudia Center, Legal Director for the Disability Rights Education & Defense Fund. “Hospitals should treat everyone who can recover and survive, regardless of disability or age.”
“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “We hope that states will revisit their policies in light of today’s resolution.”
“This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”
In addition, Martie Lafferty, Director of the Accessibility Project of the Civil Rights Education and Enforcement Center, one of the complainant groups, stated: “Tennessee’s revised guidelines ensure that Tennesseans with disabilities will have equal access to healthcare during this pandemic and other public health emergencies. In addition, these guidelines– the most comprehensive revision of crisis standards of care to date– are a best practice model for other states.”
Now the challenge will be to see that all crisis standards of care, state and hospital-based, incorporate these OCR standards, not just Tennessee’s; and to see that they are implemented and enforced. Many states and medical facilities have not yet adopted standards consistent with earlier OCR settlements on discrimination in COVID-19 triage policies, even the most basic standards against making “quality of life” judgments. If they had, Michael Hickson would not have been denied treatment in a Texas hospital last month.
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.
