A chilling waiting game: disability and healthcare during a pandemic
I have always taken pride in the tremendous progress (though far from perfect) that this country of mine has made in leading and furthering disability rights. Though I may be a minimally speaking autistic with comorbidities which significantly affect my daily functioning, and though the road has not been clear of bumps, such rights enable me to pursue higher education at UC Berkeley and aim for much more.
Now with the COVID-19 pandemic, people with disabilities like me all seem to be playing a chilling waiting game that is anxiety-filled. I wonder how long it will be before this virus impacts our family, caregivers and other supports we rely on for our wellbeing. If we are personally infected, how bad will it be? Death is an inevitability for all humankind, and I am not afraid of dying. However, what would be both macabre and tragic is if the death of a person is due to the fact of their life being thought of as not having value to society.
When I first came across the term medical rationing toward people with disabilities recently, my reaction was shock. It was even more disconcerting to learn that such practices are in play in this day and age and exacerbated by shortages in a developed country like the US, which is supposed to be a global leader in terms of resources, technology and medical research.
Historically, our society has marked some lives, such as those with disabilities, as having less value and therefore as not entitled to all that the rest of society may take for granted. For instance, in my disability studies class at UC Berkeley we had learned of the eugenics movement and sterilization laws that targeted those with disabilities; they were termed “weak and feeble minded” and thus prevented from passing on their ‘defective genes.’
With respect to medical rationing, Samantha Crane, Legal Director and Director of Public Policy of the Washington D.C.-based disability rights organization, Autistic Self Advocacy Network, states that while some states may not have explicit written laws, they do have triage guidelines that deny healthcare to some people with disabilities.
“For example, New York State Department of Health has guidelines saying that if there is a shortage of ventilators, doctors can consider ‘severe chronic conditions that adversely impact health functionality,’ like spinal muscular atrophy (SMA), when deciding who should have access to a ventilator. Even if someone was already on a ventilator before coming to the hospital, doctors can actually remove them from the ventilator if they don't meet the guidelines,“ said Crane.
From 2010 up until February this year, Alabama enabled healthcare discrimination against people with intellectual disabilities, with its now-unpublished, former ventilator triage guidelines for mass-casualty emergencies stating that “children with severe neurological problems may not be appropriate candidates.” In my mind, this guideline impacts a significant percentage of autistic children alone, not to mention children with a wide range of other disabilities. It is concerning that these guidelines were in place until just this year. Tennessee and Washington are further examples of states with discriminatory guidelines.
According to Crane, many disability organizations across the nation at both the local and national level have been collaborating in the effort to file complaints with the Department of Health and Human Services, or HHS, in recent weeks in what has become almost a race against time.
Lawrence Carter-Long, Communications Director and Director, Disability and Media Alliance Project, at the Berkeley-based Disability Rights Education and Defence Fund, also pointed to resources that the DREDF had compiled, “to give folks the resources necessary to fight back — do the homework basically — so other groups across the nation and in other states don't have to reinvent the wheel.”
These resources include information on the Illegality of medical rationing on the basis of disability as well as a letter to Governor Gavin Newsom urging him to prohibit such healthcare rationing.
Carter-Long explained, “Our intention with this material was/is to 1. make sure this is on the Governor's radar and to go on record, 2. compile the necessary resources for other groups across the nation and 3. create a template other advocacy organizations can use with minor changes.”
On March 28, the HHS Office for Civil Rights released a bulletin telling medical providers they could not discriminate against people with disabilities. Roger Severino, OCR Director is quoted in the bulletin as saying, “Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism. Persons with disabilities...should not be put at the end of the line for health care during emergencies.”
In addition, on March 30, the California Departments of Health Care Services (DHCS), Public Health (CDPH), and Managed Health Care (DMHC) issued a joint bulletin stating, “The State of California understands that people with disabilities are concerned that medical providers might consider an individual’s disability status when determining which patients to treat if hospitals or other health care facilities experience a surge of patients needing life-saving care. This joint bulletin reminds health care providers and payers that rationing care based on a person’s disability status is impermissible and unlawful under both federal and state law.”
But whether these directives will translate to reality in a field that is already absolutely overwhelmed and desperately short of resources during a pandemic remains to be seen.
Clarissa Kripke, M.D is a Health Sciences Clinical Professor and Director of the Office of Developmental Primary Care at UCSF. Kripke is on the frontlines of this pandemic and felt that “one thing that confuses doctors is that function has been used as a proxy for life expectancy.”
She explained by the time someone is having functional problems due to age or chronic disease in their vital organs, those organs have very little capacity left and any little thing could be fatal. So loss of function is associated with a poor prognosis if the reason for the loss of function is severe damage to one or more vital organs from age or disease.
Kripke, who is also Vice-Chair on the board of Communication First, which advocates for communication-disability civil rights, added that people with neurological conditions often have severe functional or cognitive problems, but perfectly healthy vital organs. In that situation, poor function doesn't mean poor prognosis at all. According to Kripke, people with disabilities and healthy vital organs benefit greatly from aggressive medical care.
“In the language of rationing schemes this distinction often gets muddy and people are assumed to be dying even when they are not. Function or diagnostic labels such as intellectual disability or autism should not be used to estimate likelihood of benefiting from medical treatment. Only signs of the health of vital organs should be used,” Kripke said.
Kripke wants to stress that the lives of people with disabilities are meaningful and valuable. She feels that healthcare rationing is not inevitable and that it instead will be determined by two things. First, the degree to which we collectively and individually do our part in stopping the spread of the virus, and second, how soon we do it. If we take action too late, then we face untenable rationing in which there is no justice any way you look at it.
“It would be helpful if we could predict who will benefit from treatment, and who will not, but we don’t have a way to do that accurately. Healthcare by lottery isn’t a better solution,” Kripke said.
Since there is no known cure for COVID-19, your immune system is the main thing that will fight the virus, explained Kripke. By the time someone is critically ill enough to need a ventilator, their prognosis is poor, with or without a ventilator, and there is little healthcare professionals can do to change the course of the illness at that point. So she would like everyone to really focus on optimization of compliance and prevention strategies.
According to Victor Pineda, every field of ethics incorporates value judgments, and there are evolving conceptions of what justice is and what is ethical or unethical. Pineda is a world renowned human rights activist, UC Berkeley adjunct lecturer at the department of city and regional planning and Director of Inclusive Cities Lab at the Institute on Urban and Regional Development.
He explained in modern times, people with disabilities have been seen as deficient or as an expense or liability to society. At the same time, we have the universal declaration of human rights like the UNCRPD (United Nations conference on the rights of people with disabilities). The current situation is thus an opportunity to rethink medical ethics in ways that follow the principles of social justice.
“In these times we are really tested to show who we really are, what we really care about, what are the values worth fighting for, what are the values worth defending. Do we value human rights and human dignity, social justice and equality? It's exactly when we should be most challenged, that we should live up to those highest morals and aspirations,“ said Pineda.
Pineda has a neuromuscular condition that requires him to use a wheelchair and a machine to breathe so he can live with his current 9% lung capacity. His machine provides non-invasive pulmonary breathing support in that it goes over his nose. He took the decision to self-quarantine early on during this pandemic to reduce risk.
Right now he feels that he lives in this existential level of threat that is assaulting not just entire systems and economies, politics, policies and institutions, but also his personal wellbeing. Pineda has had to engage in different risk assessments relative to his personal care.
“Who will care for me? How responsible are they? How closely will they follow protocol, in terms of hygiene, in terms of cleanliness, in terms of washing their hands, in terms of washing my equipment, wiping down surfaces? What is the cost associated with that much higher level of care? ... So with that I think we are in a very difficult place,” said Pineda.
Pineda had been advised by his Stanford pulmonologist not to go to the hospital if infected with the virus and instead to maximize his settings at home and try to recover there. Should he reach a point that he simply can’t breathe, then he will need to go to the hospital to be attended to.
The problem is that Pineda would not be able to go to the hospital by himself as he needs an attendant to even take him there, which puts him at tremendous threat and risk. It is akin to someone who is deaf and unable to go without a sign language interpreter.
In addition, Pineda said his ventilator would be confiscated as it does not meet certain criteria and he would be intubated, wherein they put a tube down his throat and perform a surgery called a tracheostomy. So the thought of going to the hospital without the two things he most needs — his ventilator and his attendant — is very scary for Pineda.
I have to echo Pineda's sentiment that this is all quite scary as the unfolding events feel out of control. An issue that has been on my mind is that those of us with more significant disabilities and limited spoken language ability are highly dependent on parents, family or known caregivers for much of our basic living skills support. I can just imagine my already limited communication skills absolutely shutting down when in trauma or when ill. The thought of being quarantined or left alone without support is frightening.
I also wonder what happens if both our parents or our primary caretakers during this time get infected. And what happens in the case of a single-caretaker home, for not everyone comes from a large circle of friends and support. Even in ‘normal’ times, public service agencies for the disabled community like the Regional Centers set up by the California Department of Developmental Disabilities take time in setting up or coordinating services; they would be utterly overwhelmed in a pandemic that requires almost immediate responses.
But while the immediate future has a level of uncertainty, Kripke also offered advice for individuals with disabilities and their families during this time of the global coronavirus pandemic.
The first is that it is important to have access to food, medications and supplies that people with disabilities rely on to maintain good health and also access to consistent paid and unpaid support.
She stressed that retaining your rights and being safe and wise are not the same thing. People who moved around before the shelter-in-place took effect unwittingly may have contributed to the public health crisis. She also points out that although you may be entitled to services in your home, providing those services could pose a risk to you and your family. Therefore each of us needs to make good choices about what risk is “essential.’
Kripke also felt that the complex support needs of individuals with disabilities may mean even stricter physical distancing requirements than for the general population to reduce the risk of exposure for individuals and their caregivers. It may mean postponing medical procedures or forgoing important but non-essential services.
It may also mean getting telehealth advice rather than risk physically going to a clinic, she continued, as there is not only the danger of your getting infected or spreading infection, but also the risk of being separated from your advocates and communication support. While hospitals could make individual exceptions, there are reasons why a support person is not allowed as they risk being exposed to the coronavirus in addition to hospitals not being able to spare protective gear for the support person’s use. For some people with disabilities, it makes more sense to provide enhanced treatment at home rather than receive care in a hospital.
If, however, you are having an emergency where minutes matter, she urges you to call 911.
Kripke stressed putting together a circle of support, as you also need to think about who would provide care if your supporters or parents are sick. She pointed to a webinar by California-based Disability Voices United on Coronavirus Emergency Preparedness discussing tools that could help individuals with disabilities and their families think through such a plan. In the webinar one parent actually expressed the sentiment that what terrified parents was not dying as such, rather it was dying and leaving their disabled child (of any age) without support.
Kripke also advised developing a plan for what you will do if one or more of you in a household develops a fever or cough. If you need personal assistance that requires close contact, then your household should try to secure protective equipment (masks, gloves, eye protection, gowns) to address the first 72 hours after someone in the household becomes ill to avoid spreading the virus in the home. You may be able to get more supplies from your department of public health if someone is sick.
While it is not possible to provide care to a sick person without getting exposed to the virus, she advised trying to limit exposing all supporters. This may mean some family members moving to a separate room or out of the house for a period. And if possible, exposed and unexposed people should not share bathrooms.
Other important issues according to Kripke are not allowing the more flexible regulation and oversight to lead to increased abuse and neglect; protecting service providers' health and economic interests; and access to safe quarantine centers if sick people with disabilities, housemates, family members or service providers need to be separated. Discrimination and social isolation are also important issues to be considered.
Kripke is appreciative that the Bay Area’s early and aggressive spatial distancing and shelter in place directives are being taken seriously by residents and is proud of local, city and state leaders who are sending consistent and appropriate messages, taking action and calling upon all of us to do our part. She sees the community too is coming together, and she encourages everyone to keep it up.
She feels that if we do our part to flatten the curve, public health departments and hospitals and regional centers will have more time, personnel and resources to help solve problems and accommodate. In the meantime, any solutions you come up with your friends, family and trusted community organizations will probably be safer and better than the ones they will be able to arrange.
Kripke leaves us with some very encouraging words of advice: “Let’s use this crisis as an opportunity for community organizing and sending a message that none of us are expendable. We won’t leave anyone behind. Our country has problems, and we are the solution. We can save ourselves, our families, our community, our country, and our world by sharing information, working together, acting in unison, and helping each other.”