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Issues Related to Disabled People with COVID in Group Settings - Healthcare Quality Improvement Campaign
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What is the Novel Coronavirus COVID-19


The novel coronavirus is a respiratory illness that is highly contagious. Most often, it is spread when people are closer together than six feet, through respiratory droplets from coughs and sneezes. COVID-19 can also be spread by surfaces: a person touches a surface then touches their mouth, nose, or eyes.

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Why are Disabled People More Likely to Develop COVID-19?


Disabled people are in close contact with healthcare workers and support providers, who are more likely to be exposed to COVID-19. When disabled people are in institutions such as nursing care, they are even more closely exposed because of the factors discussed here.


Even people with developmental disabilities are at greater risk. “Developmental disabilities” is an umbrella term that includes intellectual disabilities and conditions such as cerebral palsy, autism and other neurological conditions. People with developmental disabilities in the U.S. die from COVID at a rate 2.5 times higher than the general population. They are more likely to live in group homes or other institutional settings. 13-20% of people with developmental disabilities live in group settings. About 13% to 20% of people with developmental disabilities live in group settings. They are also more likely to have comorbid illnesses like respiratory diseases. Depending on underlying health conditions, people with disability may be at greater risk of developing more severe cases of COVID-19 if they become infected. This may be because of COVID-19 exacerbating existing health conditions, particularly those related to respiratory function, immune system function, heart disease or diabetes. In fact, in general, adults with disabilities are three times more likely than adults without disabilities to have heart disease, stroke, diabetes, or cancer than adults without disabilities. People with learning disabilities are disproportionately likely to be obese, have diabetes, or have kidney disease, so younger women often get sicker from COVID-19.


Disabled People are at greater risk because their carers might not be able to join them in office visits, leaving them having trouble communicating their symptoms and other important information their doctors need. Disabled people are also losing out during this time because of changes to therapies like occupational, speech therapy, and may see regression because of their inability to be consistent with their work.


Yet the attitude of governments and individuals regarding disabled and elderly people around the world has been fairly callous, reflecting a sense that disabled people are lesser or somehow disposable. In the U.S., disabled people hear statements like, “it is what it is,” “ONLY disabled and elderly people will die.” In the U.K., one advisor said, “Herd immunity, protect the economy, and if that means some pensioners die, too bad.” 2/3 of COVID deaths in the UK have been disabled people. Studies have consistently shown that doctors fail to appreciate and value the lives of disabled people, and minimize their experience.


What are Some of the Laws Governing the Rights of Disabled People?


There are three primary pieces of the law that should be considered:


1. The Affordable Care Act prohibits discrimination in health care by entities receiving federal financial assistance or administered by the U.S. Department of Health and Human Services (HHS) on the basis of race, color, national origin, sex, disability, and age.
2. The ADA also prohibits discrimination on the basis of disability in public services, programs and activities including health care services offered by public hospitals, and by private physician’s offices and private hospitals. The ADA covers physical access, communication, and reasonable accommodation of individual needs. These laws also require that health care decisions be made based on an individualized, evidence-based assessment of the patient, rather than stereotypes or assumptions based on disability, age, or both.
3. The Rehabilitation Act prohibits discrimination in federally administered programs.
On March 28, 2020, HHS, Office of Civil Rights (OCR), issued a bulletin on the application of Section 1557 of the ACA and Section 504 of the Rehabilitation Act to decisions concerning whether an individual is a candidate for health care treatment during the COVID-19 pandemic based on disability or age. The bulletin reaffirms that “[t]hese laws, like other civil rights statutes OCR enforces, remain in effect.” It also provides:
“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”
Disability advocacy organizations have been active in many states where policies discriminated against disabled people, giving lower treatment priorities to persons based on disability without any medical evidence that these stereotypes made sense. They have filed complaints with HHS Office of Civil Rights challenging policies in Washington, Alabama, Kansas, Tennessee, Pennsylvania, Utah, New York, Oklahoma, North Carolina and Oregon.


How Nursing and Group Homes Can Help Disabled People Avoid the Coronavirus


People with disabilities in nursing homes are at greater risk because of their inability to socially distance. Other factors, delineated by organizations like the WHO, place disabled people at greater risk but can possibly be addressed by nursing homes, who can support their patients during this difficult time. Nursing homes can consider the hurdles disabled people faced even before the pandemic to plan for treating disabled people with equity during COVID-19.
– Disabled people face obstacles to hygiene like hand washing. Nursing homes should make sure that sinks are physically accessible and aid with the washing process if there are motor issues.
− Disabled people may need to touch things to obtain information from the environment or for physical support. These individuals will benefit from well-sanitized environments and additional support in routinely washing their hands, as well as information about not touching their face.
– Disabled people face barriers to accessing health care. People with disabilities may also be disproportionately impacted by the outbreak because of serious disruptions to the services they rely on. Patients in nursing homes may be receiving various kinds of physical, occupational, and other therapies that are on hold because of COVID restrictions. Patients should not be denied routine care like life-saving screenings if at all possible.
– Disabled people, like many people and institutions, lack access to PPE. Disabled people are in close contact with carers, especially in institutional settings, and are at risk when carers do not have access to PPE.


More About Triaged COVID Care for Disabled People


Under a British scheme in the attempt to triage intensive care beds, people with strong dependency upon carers would be the first to be denied a bed, even if there was no evidence that their disability meant they would be less likely to survive.
Theoretically, this should not be the case in the U.S. because anti-discrimination laws, but many states have tried to get away with it, demonstrating the deeply held prejudices against disabled people.

Triage is still expected to be used but should be applied on an individual basis, without stereotypes but based on medical evidence about the person. Triage plans should not use factors that automatically exclude disabled people as though their lives do not matter. For example, plans should exclude language that vaguely condemns people with fewer years of life left until death, or refuse to treat them because of a “frailty.” The Health and Human Service Office of Civil Rights bulletin states, “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age.”

The American Bar Association has recognized specific problematic language in triage plans:


– categorical exclusions based on disability, such as intellectual or developmental disability;
– explicit or implicit quality-of-life assessments;
– assumptions regarding long-term survival that disadvantage people with disabilities;
– failure to incorporate reasonable modifications in receiving treatment, including allowing for longer time on a ventilator;
– provisions authorizing reallocation of ventilators from chronic ventilator users to other patients;
– assumptions or concerns about the ability of people with intellectual and developmental disorders to comply with post-treatment protocols; and
– overall failure to require an individual assessment of each patient to avoid decisions based on diagnoses and stereotypes.


What Else Can Nursing Homes Do to Protect Disabled People


– Ensure priority testing of persons with disabilities showing symptoms.
– Ensure the continued supply and access to medicines for persons with disabilities during the pandemic.
– Conduct training and awareness-raising of health workers to prevent discrimination based on prejudice and bias against persons with disabilities.
– Closely consult with and actively involve persons with disabilities and their representative organisations in framing a rights-based response to the pandemic that is inclusive of, and responsive to, persons with disabilities in all their diversity.
– Refrain from pressuring patients and families to sign do not resuscitate forms!
The WHO provides guidance to health workers during the COVID-19 outbreak, and it demonstrates a need for cooperation between the government and nursing homes.
−Work to ensure all clinics providing testing and services related to COVID-19 are completely accessible. Address physical barriers, attitudinal barriers, and financial barriers.
– Ensure that information about the accessibility of COVID-19 health services is disseminated to people with disability and their caregivers.
− Provide information in formats that are appropriate to people with various disabilities. This means you may have to have both verbal and written information, but also creative ways of transferring information to people with various cognitive issues.
– Provide training to nursing home workers about the risks and other consequences of COVID-19 to people with disabilities.
– Provide emotional support for patients who are suddenly isolated from family, friends, and therapists.
– “Ensure that decisions on the allocation of scarce resources (e.g. ventilators) are not based on pre-existing impairments, high support needs, quality of life assessments, or medical bias against people with disability. Follow WHO guidance to prioritize those at high risk.”


Guardianship Considerations for Disabled People During COVID


Disabled people are at risk of being involuntarily committed to a nursing home by a court-appointed guardian who does not respect their ability to care for themselves with proper support. One way families can avoid this is by drawing up a plan for their disabled loved one that demonstrates a cooperation between friends, families, and care-givers to advise disabled people as they request.
You can find a more detailed discussion of guardianship issues here.


Conclusion

Disabled people, including the disabled elderly, are at greater risk of COVID and need special consideration during the pandemic. The laws and an examination of stereotypes of disabled people can help to ensure disabled people are protected and well cared for.


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Issues Related to Disabled People with COVID in Group Settings

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