Disability Discrimination: The COVID-19 Health Care Reality
By Stephanie Patrick
Prior to the start of the pandemic in March 2020, people with disabilities faced discrimination by policy makers and health care providers who failed to recognize the fullness of their lives and the realities of their health care needs. This discrimination has become more acute due to the strains COVID-19 has placed on the medical system coupled with the increased risk and disproportionate effect COVID-19 has had on people with disabilities. Discriminatory policies are clearly manifest in three distinct areas: crisis of care guidelines (a.k.a. health care rationing), vaccination distribution planning, and newly restrictive policies on support persons in health care settings.
Rationing of Scarce Medical Resources
There are shortages of critical health care services and equipment across the nation as the COVID-19 public health crisis threatens to overwhelm hospital capacity. States are developing their own plans and guidance for hospitals. New Hampshire’s guidance, once completed, will recommend standards and principles to help hospitals throughout the state navigate difficult decisions if rationing of health care is necessary. The hope is that the state will provide guidance so the individual plans of hospitals do not discriminate against people with disabilities. While these crisis standards of care plans are particularly relevant now, they will also guide hospital staff in future crises.
Advocates identified four major areas of concern with the most recent state plan and triage guidance:
1. The state’s lack of oversight of hospital plans to ensure their plans are not discriminatory;
2. The continuing lack of transparency from hospitals which have yet to make their existing or proposed crisis standards of care plans available for review;
3. The state’s failure to include sufficient perspectives of people with disabilities on its oversight committee;
4. The lack of accessibility of the plan itself. All plans and guidance documents must be available in plain language and provide information on how to request an accommodation or file an appeal.
Read a letter on this issue from 29 disability advocacy organizations: http://bit.ly/38GNyiJ sent in August 2020.
Any state guidance, as well as all hospital crisis plans, must recognize that the lives of people with disabilities are equally valuable to those without disabilities and that people with disabilities should not face discrimination when seeking life-sustaining care. But even now, six months after advocates submitted the above-mentioned letter, the state has not responded to the concerns, and hospitals have not released their plans for review.
There are several ways to advocate on this issue:
• Reach out to your local hospital for a copy of its crisis standards of care plan.
• Encourage your local hospital to make its plan publicly available.
• Tell the Governor what you think about the state’s draft guidance by emailing him at email@example.com.
To view more information on New Hampshire’s plan and guidance see: http://bit.ly/3ljyM6X
New Hampshire is still in the early stages of vaccine distribution. Throughout this process, it is critical to watch for a number of issues that will impact people with disabilities.
• Physical Accessibility: The state must accommodate people with disabilities at vaccination sites by providing accessible vaccination locations, a fully accessible website that allows for easy sign-up, and alternative sign-up methods.
• Accessible Information: The state must provide information about the vaccine and its phased distribution plan in plain language so that people with disabilities – and those who support them – can understand their eligibility, make informed decisions, and navigate the registration process if they choose to get the vaccine.
• Informed Choice: People with disabilities, even those in congregate settings, must be given the choice to receive the vaccine. It should not be mandated.
• Reasonable Accommodations: The state must develop a process to request reasonable accommodations, changes, and/or modifications for people with disabilities as part of the vaccination sign-up process online or via the 211 system. If people with disabilities make a request, the accommodation should be provided without delaying access to the vaccine whenever possible.
To advocate on this issue:
• Speak up if the process is not working for you or your family member(s):
o Email firstname.lastname@example.org with questions or concerns.
o Contact DRC-NH if you are being discriminated against in the vaccine distribution process.
Restrictive Visitor Policies
In an effort to prevent the spread of the COVID-19 virus and to ensure the safety of health care workers and patients, health care facilities across the state have implemented policies that restrict access to “extra” people at medical appointments, during hospital stays, and in other health care settings. However, these policies must allow for reasonable modifications – or changes to the policies – for patients with disabilities who may need assistance and support with communication, coping with stressful situations, or managing health care decisions. This assistance is often provided by a support person. Communication is essential to quality medical care, and necessary for the health, well-being, and safety of the patient. Therefore, all facilities must allow for these types of reasonable accommodations as part of their policies.
If you are a person with a disability planning to visit a health care facility and you need a support person to accompany you, contact the facility in advance to make the request. If the facility does not agree, ask for a copy of their policy or a denial in writing. If you are still not successful, contact Disability Rights Center – NH for help.
Stephanie Patrick is the Executive Director of Disability Rights Center – NH.
DRC-NH, in collaboration with the UNH Institute on Disability and the New Hampshire Council on Developmental Disabilities, distribute a quarterly RAP sheet to educate community members and policy makers about the latest research, policy, practice, and advocacy issues affecting individuals with disabilities and their families.