This is a “Know Your Rights” toolkit that covers rights and strategies for people facing potential triage discrimination based on disability or weight, alone or in combination with other characteristics, during the COVID-19 pandemic in the United States. You can share it using the link:
If you want to take action to help stop these discriminatory triage policies, please visit and sign
(Note: We hope to amend this document with more information related to age discrimination in the future.)
This toolkit is not legal advice or medical advice. Information has been sourced from the web, and is for general information purposes only. This is a changing situation. Laws and guidelines differ by state and location. Policies differ by hospital and facility. This document may change as things progress, so check back. This information may not be up to date. It’s up to you to be sure the information is correct and applicable to you.
Last updated July 28, 2020
Image description: A fat femme with long, dark, curly hair and cat-eye glasses sits in front of colorful lights holding a sign that reads “It’s the discrimination, not the virus that’s going to kill us. (It’s the hate that broke my heart) #noICUgenics #NoBodyIsDisposable #DontRationOurCare with a drawing of a red broken heart.
This document contains the following sections:
- What to do before needing to go to the hospital
- What to take to the hospital
- Who to bring
- Going where higher weight may be protected
- Strategies for advocacy
- Potential survival strategies to consider if you face discrimination
- Reallocation Concerns
- Sample letters to providers
- About Us
Image Description: A fat, white adult with round glasses, very short dark hair and a red shirt holds a white paper sign that says in marker “I am not ready to die. #NoBodyIsDisposable #NoICUgenics”
As the world struggles with the outbreak of COVID-19, many locations are facing shortages of needed resources, especially ventilators, some medicines, and staff. Many countries, individual states within the United States, professional organizations, and medical facilities are proposing discriminatory triage protocols that exclude certain disabled patients and older patients from treatment that offers them the best chance of survival, even when they are likely to benefit from that treatment and will die without it. This discrimination is common despite the existence of a variety of anti-discrimination laws.
Higher weight people may face direct weight discrimination via triage protocols that rely on “comorbidities” which can include weight, or attitudes which assume fewer life years or lower quality of life for higher weight people. Fat people may also experience indirect weight discrimination based on other diagnoses that correlate with higher weight or stereotypes associated with higher weight. Weight discrimination has a disproportionate, compounding impact on many people of color who already experience systemic inequalities and bias within the healthcare profession. In the United States, Indigenous, Black, and Brown communities are especially subjected to the risks of systemic mistreatment related to COVID-19. Other groups, including the LGBTQIA community, may also be at higher risk.
As of this update, we are not aware of specific, substantiated life-or-death incidents of weight discrimination, however the circumstances related to COVID-19 which prevent witnesses from being at the bedside make it difficult for people outside the hospital to know what is happening inside the hospital, especially for patients who are denied treatment and thus do not survive to tell their stories. Media reports indicate that such discrimination may be happening. (For example, see: At the Top of the Covid-19 Curve, How Do Hospitals Decide Who Gets Treatment? (NYT) “In New York, the guidelines rely heavily on the judgment of doctors to assess a young patient’s risk of death. The doctor is supposed to take into consideration a variety of health conditions, including morbid obesity…which may weigh against the most advanced lifesaving care for coronavirus.”) We are aware of mistreatment at the intersection of race and disability. (For example, learn more about the passing of Michael Hickson: Quadriplegic Man’s Death from COVID-19 Spotlights Questions of Disability, Race and Family (WP)
Providers in hard-hit areas are under tremendous, inhuman stress. Fat people, people of color, and disabled folks historically face bias in healthcare settings during the best of times, even when witnesses are allowed to accompany them for treatment. Finally, protocols that are discriminatory are nearly universal, and front line providers are often directed to follow those protocols even if they disagree with them. These facts combine to create a perfect storm with disabled, fat, old, and racially minoritized people caught in the middle. If you fall into any or all of those categories, there are several things you can do to try to improve your chances of receiving the care you want and deserve…
WHAT TO DO BEFORE NEEDING TO GO TO THE HOSPITAL
If you can, it’s a good idea to get these papers ready before you even get sick. States have different requirements for these documents, so make sure the documents you create are valid in your state.
Prepare These 4 Critical Legal Documents
Documents 1 and 2:
Durable Power of Attorney for Healthcare
(or Medical Power of Attorney) and
Durable Financial Power of Attorney
Durable Power of Attorney for Healthcare (or Medical Power of Attorney) is a document giving power to a person you choose to make medical decisions on your behalf and advocate for you while you are unable to do so.
Durable Financial Power of Attorney is a document giving power to a person you choose to make financial decisions on your behalf while you are unable to do so.
- Choose your representatives carefully. The person must be trustworthy, able to understand and communicate what you want, and be ready to fight for you if necessary.
- Make sure they keep a signed copy of the Power of Attorney documents on them at all times.
- Bring at least three (3) copies of your Durable Power of Attorney for Healthcare with you to the hospital so care workers know who you have chosen. Otherwise, they might make assumptions. Give one to the nurse or staff who admits you and ask it be scanned into your file, one for the nurse assigned to you, and one to keep with you at your bedside.
- Discuss what you want to happen, including end of life decisions, with your chosen person before you go to the hospital.
- If you already use your own ventilator, or might be put on a ventilator, and are concerned it will be reallocated to another patient because of your disability (including weight) or age, discuss your options in advance.
Image description: An illustrated stack of documents. The front document title is “Power of Attorney.”
EXAMPLE: Pilar needed a ventilator and was placed on one. She was sedated during the process and is now unable to speak. Pilar chose Ari to be her Power of Attorney and they talked about her wishes in advance. When a hospital care provider tells Ari that the hospital has a triage committee that has decided to reallocate the ventilator that is keeping Pilar alive because a nondisabled patient needs it, Ari is able to speak for Pilar and explain that Pilar does NOT consent to the removal of the ventilator, since removal is not needed for her own health and safety. Ari does not want the hospital worker to get into trouble, so Ari reminds the hospital worker that touching Pilar’s body to remove the ventilator without consent might be a crime, and that employees may not be covered by malpractice insurance or immunity when committing crimes. Ari tells the hospital worker that they should check with an attorney that represents them (not just their boss or an attorney for the hospital), to figure out whether they could be personally liable in civil or criminal court for the harm they would cause Pilar by removing the ventilator without her consent. Ari asked how the care provider feels about removing the vent, which will likely lead to Ari’s death. The care provider says he personally disagrees with removing the ventilator. He is also concerned that the instruction to remove it violates Pilar’s rights and he is not comfortable removing it, so he explains the situation to his supervisor, his hospital ethics personnel, Human Resources, and leaves an urgent message for an attorney who can help him understand his rights and responsibilities under his state’s laws.
An Advance Directive is a statement of your wishes regarding medical treatment.
- Keep a copy of your Advance Directive, and bring a copy to the hospital with you.
- Discuss what you want to happen, including end of life decisions, with your chosen person before you go to the hospital.
- You may want to store a copy of this document, the instruction not to repurpose your ventilator, if applicable, and the location of your go bag in a prominent location likely to be seen by paramedics: taped to your front door, in your pocket, etc.
Will or Trust
Wills and trusts are end of life documents that provide instructions about your wishes and where you want your property to go. There are many resources to help you create these documents. If you die without these documents, the people making decisions might not be the people you want.
Create a Connection Kit
Create a Connection Kit to help you stay connected, and to help providers connect with you as a human being worthy of life-saving treatment.
Create a Connection Kit to help you stay connected, and to help providers connect with you as a human being worthy of life-saving treatment. You may be one of hundreds of sick people they are seeing, so try to help them see you as a unique person.
Tie a string through the corner of a plastic paper protector or clear ziplock bag. Use both sides of the bag or paper protector so that you have two different pages facing out that can be seen by medical staff. Make multiple copies of this because it can get lost in hospital transfers – one attached to you/your bed/your door, one in your “go bag” and one that a friend can bring. It can be tied to your gurney or looped around your wrist where you and your care team can see it.
On One Side Include:
- A front page facing out that has:
- A humanizing, compelling photo of yourself alone or with loved ones and
- A very short mini introduction of yourself using no more than 8 key words or bullet points so triage staff who only see you for a minute can “get to know you” as a person
- Critical info (EX: “Advance Directive inside”)
- See the photo for an example of this
- A back page facing out that has:
- Phone numbers of family or friends and your emergency contact
- A humanizing photo of yourself in your normal life at work or with friends
- If you want, a slightly longer paragraph introducing yourself
- See the illustration for an example of this
Image description: Photo of a person wearing a sheet protector on a string around their neck, with a piece of paper inside that contains a photo of themselves dressed up, surrounded by large handwritten words: “Allilsa Fernandez: I am: EMT, I love my pets, Peer Specialist, Someone’s child, I love pizza, Community organizer, I want to live, Thank you for saving me.”
Image description: An illustration of a fat person’s arm with a hospital ID bracelet, holding a document in a sheet protector. The document includes the headings “About me,” “Dear provider” and “Phone numbers,” along with phone numbers for the person’s wife and advocate, and an image of two smiling fat people hugging with the caption “I am loved.”
WHAT TO TAKE TO THE HOSPITAL
If you are going to the ER, you will want to bring as much support as you can. Many medical facilities have strict limits on visitors or advocacy accompaniment right now. Nevertheless, people with disabilities have rights that include the right to certain policy modifications under federal and under some state laws. For example, disabled people may be able to bring a family member or other helper unless they are also sick. (For more information, if you are in California, see Know Your Disability Healthcare Rights Sheets from Disability Rights Education and Defense Fund (DREDF) and also Hospital Visitation for Patients with Disabilities from DREDF and Disability Rights California.)
When going to the hospital, consider bringing the following:
- Medications (Hospitals may not normally allow you to take your own medicine when you are at the hospital, however some people may feel more comfortable having their medicines with them, for example to show a provider exactly what they are taking, or because there may be policy exceptions made due to medication shortages.)
- A Sharpie or surgical marker (black or color that shows up well on your skin).
- Advocacy Supports:
- Phone charger
- Charged phone batteries – as many as you can bring
- Know Your Rights printouts
- Printouts of advocacy documents/letters to providers
- Connection Kit (described above).
- A copy of your signed Power of Attorney for Healthcare (described above).
- Communication tools: paper, pens, tablet or any device you can use easily, assistive communication devices, extra hearing aid batteries, spare eyeglasses or contacts.
Image description: An illustrated cell phone and charging cable, with an extra external phone battery.
- CONSIDER whether you want to bring your own breathing-support equipment, like a CPAP/BiPAP/APAP or oxygen concentrator, if you have it. Considerations:
- If there is a shortage, the hospital may not be able to supply you with needed equipment, so having your own could make a life or death difference.
- Is equipment being “reallocated”? If so, are you risking your equipment physically being taken from you if you bring it?*
- The hospital may have policies preventing the use of personal equipment, or may lack the personnel to test it.
- Make sure your name is securely on whatever equipment you bring.
- If you have them, BRING your own supplies (masks, gloves, tape, whatever you need).
Tip: If you call the hospital prior to going and are told you can’t bring an advocate, you can still ask again in person and explain why you need an advocate. You may get different answers from different people.
*For prohibition of personal ventilator reallocation in Tennessee and with some application generally, see Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People with Disabilities During COVID-19 Pandemic, which indicates that reallocating personal ventilators could violate disability law. Note also, on June 9, 2020, the State of California’s Department of Public Health released amended Crisis Care Guidelines that have a lot of important information, including the fact that in California personal durable medical equipment like ventilators brought in by a patient cannot typically be reallocated. See Summary of California’s Revised Crisis Care Guidelines.
Many hospitals have specific visitor policies not allowing individuals to be accompanied. Check your hospital to find out their policy. Keep in mind that individuals who have a disability may be entitled to reasonable accommodations to such policies.
- From Hospital Visitation for Patients with Disabilities for Californians by DREDF and Disability Rights California, Patients with Disabilities Can Have a Support Person with Them When Needed for Equal Care
- Many patients with disabilities need a support person when they are in the hospital.
- Hospitals and doctors must give all people with disabilities the “reasonable modifications” they need to get equal care.
- “Reasonable modifications” are changes that disabled people need to be equal. One example is to let you have a support person with you in the hospital.
- A support person can help you in different ways like:
- talk or communicate with others
- get around your room and the hospital.
- feel better and less worried.
- help you with things like eating and staying clean.
- The support person can be your personal care attendant, a family member, a friend, or other caregiver.
Warning: Always consider whether the hospital you want to go to is within your insurance coverage area and meets your plan requirements so that you are not surprised by unexpected medical costs, which can easily be financially devastating. Also make sure you factor in your immediate condition when making these decisions. You may not have time to get to a location with legal protections if you are too sick – you may need to go to the closest emergency room.
Confirm Hospital Information: Get as much information about the hospital you plan to go to before you leave. Knowing hospital protocol procedures, current hospital capacity, and hospital policies may make the difference between receiving life-saving treatment or not. It is also important to know the appeals process should you be denied care. Triage protocols and policies very significantly between states and even between hospitals within the same state.
Questions you may want to ask hospitals you are considering:
- Are you currently at or near capacity?
- What are your triage protocols?
- As a person who is ________ (EX: higher weight, 70 years old, diabetic, transgender, part of the LGBTQIA community, etc), how will that factor into my ability to receive the best life-saving care??
- If I disagree with a triage decision denying me care, what is the appeal process? Are the grounds for appeal limited only to a recalculation of a triage score? If not, what are the grounds for appeal?
- Does your hospital discriminate against transgender people, or do you serve all people regardless of gender identity and expression?
- In California, or in any state where helpful treatment guidelines have been issued, ask whether the hospital is complying with the guidelines.
If you are a fat person in or near a place that has a law against discrimination based on weight, personal appearance, or personal characteristics, contact a lawyer in your state to find out if it covers public accommodations/healthcare. If it does, consider going there for medical care if reasonable and safe to do so.
Unfortunately, providers in these jurisdictions may not necessarily be aware of the law (or of a relevant Executive Order), or they may choose not to follow it. However, if there is a law, ruling, or Executive Order, it may be easier to fight for equitable care there than in a place without one.
Image description: An illustrated US map.
Some places that have laws, rulings, and Executive Orders related to weight:
Binghamton, New York
- Covers places of public accommodation.
- Height/weight are protected.
- Covers places of public accommodation, specifically including hospitals.
- Physical appearance is protected.
San Francisco, California
- Covers places of public accommodation.
- Height/weight are protected.
- Compliance Guidelines to Prohibit Weight and Height Discrimination
Santa Cruz, California
- Covers places of public accommodation.
- Physical characteristics are protected.
- Covers places of public accommodation.
- Personal appearance is protected; categorizing or classifying a person is not allowed.
- Covers places of public accommodation.
- Personal appearance is protected.
- Executive Order 2020-64 (COVID-19) Affirming anti-discrimination policies and requiring certain health care providers to develop equitable access to care protocols: Scarcity protocols of designated healthcare facilities (including hospitals) must prohibit medical decision-making based on social stigma or stereotypes related to many things including height and weight.
- Height/weight is specifically protected in employment.
The State of California does not explicitly protect people from weight discrimination, however, on June 9, 2020, the State of California’s Department of Public Health released amended Crisis Care Guidelines. These Guidelines have a lot of important information and outline rights and responsibilities during COVID-19. They emphasize nondiscrimination across many populations: Healthcare decisions, including allocation of scarce resources, cannot be based on age, race, disability (including weight-related disabilities and chronic medical conditions), gender, sexual orientation, gender identity, ethnicity (including national origin and language spoken), ability to pay, weight/size, socioeconomic status, insurance status, perceived self-worth, perceived quality of life, immigration status, incarceration status, homelessness, or past or future use of resources. [Emphasis added.] For an easy-to-understand summary of the Guidelines, seeSummary of California’s Revised Crisis Care Guidelines.
State of Washington
In the case Taylor v. Burlington Northern Railroad Holdings, Inc., the Supreme Court of the State of Washington explicitly ruled that “obesity” qualifies as an impairment under the law, so people in Washington have some protection from discrimination based on “obesity.”
Note About Other Forms of Discrimination: Recently, the federal government has been trying to reduce protections for transgender people under the Affordable Care Act. If you are transgender, or are perceived to be transgender, consider whether different hospitals may offer better protections for you. Keep in mind the warnings listed above related to weight and choice of hospitals.
- Be an advocate, bring an advocate. An advocate is a friend, family member, or any person you trust to fight for you and your wishes.
- If you are a disabled person and need a support person, consider bringing as your support person someone who can also help you.
- Bring an advocate by phone if they can’t come in person. Many ERs and hospitals have policies prohibiting cell phone use, but you can try telling them that you want to have your advocate present via phone because they are not allowing non-patients into COVID treatment areas. If you need to have a support person available by cell due to your disability, you can tell them you need them to make an accommodation in their policy.
- If you are disabled, you have a right to communication assistance. D/deaf people can get ASL interpreting or CART. Blind or vision impaired people have a right to papers in Braille or large print or in a computer file.
- You can get information in another language, or you can have an interpreter.
- If you don’t have an advocate, bring someone to act as a witness; ask them to get names and take notes about what treatment you are offered and why.
- You can write your desire for care and the phone number of your advocate/decision maker on your body using a sharpie.
Image description: A fat, white femme with a short blond bob and white stars behind her, holding a large white sign handwritten with marker that says “#NoBodyIsDisposable, Denying care based on protected characteristics is UNLAWFUL (and UNETHICAL and SHITTY.) #ImAPersonNotADifficultDecision #FatNotDisposable #DontRationOurCare
POTENTIAL SURVIVAL STRATEGIES TO CONSIDER IF YOU FACE DISCRIMINATION
Warning: We hope that these strategies won’t be necessary to use. We also know that some of us will be in life or death situations, so it’s worth considering many options. We know that it will be exponentially harder for people of color, trans/non-binary folks, and other marginalized groups. We acknowledge that some of these strategies may cause the user harm and may be futile. For some people, it may be better to resist right away; for others, trying to be nice may be the best approach. Use what works for you, discard what does not.
Build Connection with Health Care Providers
- Try to connect with your providers. Remember they are under intense stress. Ask how they are doing.
- Humanize yourself. Show pictures of your family. Share something unique about yourself. Do your best to connect and be seen as a person.
- Connect with everyone you come in contact with. The providers caring for you may not be the people making the decision on whether you receive life saving treatment. You may need to build connections with people making triage decisions as well as your providers.
- Note: Depending on the policies where you are, you may not meet and speak with the people making triage decisions about whether you get life-saving care or not, however you can request such a meeting, whether it is in person or over the phone.
- Empathize with the challenges and pressure providers are under.
- Turning/Proning: Some medical professionals advise turning patients onto their stomach so the patient’s lungs can drain. Ask your provider if this is a good option for you. Staff may hesitate to turn higher weight patients because they are busy and it may take more people to do it safely. This is discrimination. You have rights and can push back. You can tell them you need a “reasonable accommodation” due to your weight-related disability.
- With regard to rationing, be clear and direct about your wishes. If it is how you feel, tell them you want the treatment options that provide the best chance to recover, just like nondisabled/younger/thin/non-minority patients receive.
- You can use your Sharpie to write your instructions directly on your chest in case you become unable to communicate. Be sure that you do not accidentally write anything that conflicts with your choices in your Advance Directive.
Image description: An illustration of a fat patient in a hospital bed talking with a medical provider dressed in PPE standing next to the bed. The patient’s connection kit is tied to the bed rail.
The medical, administrative, and legal professionals making the decisions regarding who receives life saving treatment if there is a shortage, or in some cases even an anticipated shortage, may not be the same people who are caring for you. Triage committees may be made up of doctors and hospital administrators who have not met you. They may be relying on general information about your condition. Unfortunately, these people may be on the committees for many hospitals in the area and may be located off site and never even have patient contact. Your health care providers may disagree with the decision of the triage committee. If you and your health care provider agree that you should receive life-saving treatment, but the triage committee disagrees, you can encourage your provider to follow their medical opinion and discretion, even if it is not what they are being told to do.
It is important to ask questions and get names and information regarding who is making decisions regarding your care. This kind of self-advocacy can be very hard, but remember, you are worth it! When you advocate for yourself, you make it easier for other people to advocate for themselves and you make it harder for people to discriminate.
If health care providers make you feel less deserving of the best chance to live, remember that there are hundreds of thousands of fat, disabled people and allies who know you deserve to live and we are rooting for you! You deserve to live!!!
If there is a law, ruling, guidelines or Executive Order prohibiting weight discrimination where you are, you can:
- Politely, but confidently, inform your providers about the law, ruling, guidelines or Executive Order.
- Explain that you came for services there because you were worried about discrimination.
- Ask them to help you assert your legal rights to nondiscriminatory care.
- Insist on your rights.
Image description: An illustrated laptop computer. The screen reads: “San Francisco Police Code: Article 33. Prohibiting discrimination based on race, color, ancestry, national origin, place of birth, sex, age, religion, creed, disability, sexual orientation, gender identity, weight, or height.“
If there is no law against weight discrimination where you are, or the providers refuse to obey the law, then you may argue:
- I know that you became a provider to help people heal. I am asking you to help me.
- I am protected by the Constitution. Please help me assert my rights to get the care I need.
- I am protected by federal antidiscrimination law. (EX: The Americans with Disabilities Act, Section 504 (1973 Rehabilitation Act), the Affordable Care Act) Please help me assert my rights to get the care I need.
- I am protected as a disabled person under state and/or local laws (if there are such laws where you are).
- What you are doing is WRONG.
- What you are being told to do is WRONG.
- This is against your oath as a provider.
- I do not consent to withdrawal of treatment.
- This is not triage, this is discrimination. I want treatment. (Examples: “I want to be resuscitated.” or “I want high flow oxygen and BiPAP if no ventilator is available.”)
- I have questions. What alternative treatments are available? What treatments would be available if I was thin, not older, or not disabled?
- I don’t agree with your decision. I want to speak to a supervisor.
- I am not receiving equal treatment. I want to file a grievance.
- I don’t agree with your decision. I want an ethics consultation.
- I don’t agree with your decision. I want to appeal. What is the appeals process? Are there any restrictions on the reasons that can be used for an appeal?
Note on Appeals: The “grounds”, or reasons, for your appeal will depend on what has happened to you. There are many reasons you might be able to appeal. Here are some examples of reasons people appeal.
Image description: An illustration of the Constitution of the United States, with the words “We the People” in large font.
EXAMPLE 1: Theo is a Black man with high blood pressure. He has been denied a ventilator. He notices that many of the people who are given ventilators are thinner and not Black. He believes stereotypes about his race and medical conditions have resulted in him receiving a worse score on the calculations that determine that he will only be offered palliative care, not the best chance at life-saving treatment. He uses his phone to text his outside support person, Brienne, (who has medical power of attorney) to tell her what is happening and asks that she advocate for him and call the local news station. Even though he feels very sick, he keeps fighting. Brienne takes action on Theo’s behalf. She explains his position to a supervisor. She files a grievance. She asks who she can speak to and asks for help from the patient ombudsperson that the hospital refers her to. She makes a complaint stating that the process and calculation structure is discriminatory. She also asks for a recalculation of his score and appeals based on a belief that the score is not correctly calculated. After she is told that the decision has been made correctly, she asks for a consultation with the ethics team. She also appeals the decision based on his observation that the results of the hospital’s process are discriminatory.
EXAMPLE 2: Stella is 76 years old and of higher weight. She has been told that, due to her age and her weight, and the fact that a surge in patients is predicted, she does not qualify for dialysis, but that every attempt to make her comfortable will be made. An ethics committee member tells her that they need to save the equipment for younger people who have not experienced all the stages of life. Her doctor tells her that as a higher weight person, she is less likely to survive, so they need to save resources for people who have a better chance at life. Stella calls a friend outside the hospital and explains what is happening, and asks her friend to contact elder rights and disability rights groups to help advocate for her. Stella tells her providers that although she does not want to be resuscitated, she still wants the treatment that gives her the best chance to survive before needing resuscitation. She asks to appeal the decision that involved her weight, explaining that higher weight becomes more protective as people age. She also points out that her relatives commonly live into their 90s, meaning she has many years of life left to live. Stella says the decisions about her case have been made without considering her as an individual and without understanding her individual circumstances. She also explains that factors like her age and disability (including weight-related disabilities), are protected by law and that the hospital is violating her civil rights if they discriminate based on those factors. She makes an appeal of their decisions based on those factors. She also appeals based on the fact that there are not yet more patients than need, and that she should at least be provided the equipment until other patients are present.
Tip: If you are unable to speak, you may be able to write, gesture, sign, or point to indicate your desires. If you are unable to speak because of a disability, you have rights related to communication. You can insist on an interpreter or assistant so that you can understand and be understood.
Many disabled people rely on durable medical equipment during their daily lives, including ventilators, oxygen concentrators, and CPAP/BiPAP or similar devices. People who are in the hospital with COVID-19 may also need such devices during their stay in the hospital. Because there may not be enough devices for all the people who need them, triage protocols direct who will receive care and who will get to use life-saving equipment either during times of scarcity or in anticipation of scarcity to come. Some triage protocols allow for the reallocation of devices like ventilators in hospitals, and there is concern that some triage policies may allow for reallocation of personal equipment as well. To understand your rights related to reallocation here are some ideas:
- Ask the hospitals where you are considering going what their policies are.
- Research your state’s policies regarding triage and reallocation.
- If you rent your personal equipment, review the contract you have with your durable medical equipment provider (the people you rent from). If you do not have a copy of the contract, you may be able to call and have it emailed to you.
- Remember you have property rights to equipment you rent or own.
NOTE: We have not heard of people having their personal equipment reallocated, although we have heard anecdotally of people having back-up equipment reallocated by their equipment providers. Reallocation may violate the Americans with Disabilities Act and other laws. If you hear of this happening, please reach out to Disability Rights Education Defense Fund (DREDF) and other disability rights groups, including disability rights lawyers in your state.
NOTE for CALIFORNIANS: As discussed above, on June 9, 2020, the State of California’s Department of Public Health released amended Crisis Care Guidelines. The Guidelines make it clear that in California personal durable medical equipment like ventilators brought in by a patient cannot typically be reallocated. See Summary of California’s Revised Crisis Care Guidelines.
Frequently Asked Question: I rely on a ventilator and a back up ventilator at home. What do I do if someone shows up at my door to seize and reallocate the equipment?
Answer: You have rights. Your rights will vary depending on where you live, who owns the equipment, and other factors. If you get a notice that anyone, including a durable medical equipment (DME) provider, intends to recall your equipment, you should reach out to a lawyer and a disability rights group for help immediately. You may also want to contact a mutual aid organization in your area to see if they can help. In addition, you could consider reaching out to communities of faith or media for help or to spread your story. Remember, for many high-risk groups, letting someone in your house is very dangerous, so if someone shows up unexpectedly demanding your equipment, consider your immediate safety. Even if it seems rude, unless they have a warrant or order signed by a judge, you may not want to answer or open the door, or you may want to yell through the door that it is not safe for you to let people into your house. Contact an attorney and disability rights organization as soon as you can.
SAMPLE LETTERS TO PROVIDERS
Instructions: People often have a hard time communicating with medical providers or knowing what to say. Many feel the intense power imbalance, which can be even worse for people of color, higher weight and disabled people, people in the LGBTQA community, or any group that faces discrimination. The letters linked below may give you some ideas of what to say, or you can even show them to providers if that works best for you.
You can also use these to write your own letter for your providers. In an emergency setting, remember it will be hard for providers to take the time to read, so keep your message short and focused. Making your letters as personal as possible is ideal.
Please choose the link that applies to your situation:
- Letter for people who are higher weight AND disabled
- Letter for people who are higher weight
- Letter for people who are disabled
- Letter for people who are older (consider adding this language to one of the letters above if you need to)
#NoBodyIsDisposable Campaign Against Discrimination in Triage – Join our 3 step action campaign to try to stop the discrimination being put in place.
California Crisis Care Guidelines
- Summary of California’s Revised Crisis Care Guidelines
- Know Your Rights: Hospital Visitation (for California, but may be applicable other places as well.)
Resolution of Federal Civil Rights Complaint Raises the Bar in Prohibiting Medical Discrimination Against People with Disabilities During COVID-19 Pandemic
Communication First COVID-19 – communication resources for COVID-19 patients.
DREDF COVID-19 Advocacy and Resources – resources from the Disability Rights Education & Defense Fund including a one page know your disability healthcare rights sheet (in English, Spanish, and Chinese) with a helpline for people in California, and a legal brief explaining the law in detail.
OCR Issues Bulletin on Civil Rights Laws and HIPAA Flexibilities That Apply During the COVID-19 Emergency – The U.S. Department of Health and Human Services issued a bulletin reminding health providers of their obligation to not discriminate when treating COVID-19 patients.
Giving Someone a Power of Attorney for Your Healthcare (multi-state guide and form) – The American Bar Association has resources for medical power of attorney forms. Laws and requirements vary by state, so it’s best to consult an attorney to make sure your form is right for your situation.
SF.gov Volunteer – volunteer to help in San Francisco, California.
How to Survive COVID-19 Service Rationing – support for folks in the UK.
A Know Your Rights Guide for Transgender People Navigating COVID-19 – Created by Transgender Legal Defense & Education Fund
A Know Your Rights Guide for Transgender New Yorkers Navigating COVID-19 – Created by Transgender Legal Defense & Education Fund
Help for immigrants during coronavirus
Know Your Rights during COVID-19 – from National Lawyers Guild and Vision Change Win.
NoBody Is Disposable Coalition
We are people targeted by triage plans during the COVID-19 pandemic — people with disabilities, fat people, old people, people with HIV/AIDS or other illnesses — and our loved ones who don’t want us to die. We are allies who want to help. We partner with social justice and civil rights organizations, as well as medical professionals to demand policies that avoid triage and avoid discrimination in triage.
This Toolkit was produced with input from a lot of people – fat rights, disability, social justice and civil rights lawyers; leaders in fat liberation, elder services, and disability justice; doctors and nurses; students, artists and writers… Thank you to everyone for finding time in this crisis to share your knowledge.
Have feedback, additional resources, or suggestions? You can reach us here: