In Part 4 (my final blog), you will find some of my favorite online COVID-19 resources. I hope you find them helpful as you move from sheltering in place to resuming life in the community – a different kind of normalcy.
As the country begins to reopen, let’s review what we know:
- The pandemic is real.
- People with disabilities are at high risk.
- There is a lot of information on COVID-19.
- Information from different resources can be conflicting.
- It is very confusing.
- Your advocacy is working!
Be proactive. Hope for the best and plan for the worst. Remember, you have the advocacy tools you need.
- Make a checklist of what you need to do before you need it.
- Have your healthcare plan ready to go; do not forget to list your specific accommodations and communication needs.
- Be ready to assert your need for an exception to the “no visitor” policy, citing the presence of a loved one/caregiver is not only an accommodation under the Americans with Disabilities Act (ADA), it is a lifesaving requirement.
- If your loved one with a disability is alone at the hospital and you are prevented entrance, remember that you are your loved one’s voice, advocate, and protector! DO NOT take “NO” for an answer. Your disability legal rights are still intact!
- You may want to prepare a medical power of attorney.
- Prepare a list of the things you want someone to know about your loved one with a disability in the event you are unable to stay at the hospital with them (example: communication style, dietary requirements, calming techniques).
- Prior to a hospitalization, ask for a written copy of the facility protocol and appeals process in the event they have to “prioritize patient treatment.” You will be more prepared, and this can be a time saver in the event your loved one is denied medical treatment.
On March 28, 2020, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) issued a bulletin to ensure entities covered by civil rights authorities keep in mind their obligations under laws and regulations that prohibit discrimination in HHS-funded programs.
The Office for Civil Rights enforces Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, 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. 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.
The full bulletin can be found at: https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf?fbclid=IwAR351WokrC2uQLIPxDR0eiAizAQ8QXwhBt_0asYiXi91XW4rnAKW8kxcg
HHS’s OCR guidance makes clear that states and hospitals have legal requirements to provide reasonable accommodations to ensure people with disabilities have equal access. The Center for Public Representation (CPR; https://www.centerforpublicrep.org) and other disability organizations have filed a number of complaints with U.S. Department of Health and Human Services’ Office of Civil Rights (OCR) regarding states’ discriminatory treatment rationing protocols and hospital no-visit policies to ensure that people with disabilities have equal access to life-saving COVID-19 treatments. Specific information can be found on the COVID-19 section of their website listed below.
What can you do if your state does not have statewide exception to the no-visitor policy or has crisis standards of care that are discriminatory? Advocates around the country are forming coalitions with their statewide disability allies to write letters to their governor and Public Health Department to address the no-visitor policies and medical rationing. On June 9, in response to the first federal complaint challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services (HHR) announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic. The resolution and press release can be found on the U.S Department of Health and Human Services (HHS) website at https://www.hhs.gov/about/news/2020/06/09/ocr-resolves-complaints-after-state-connecticut-private-hospital-safeguard-rights-persons.html.
I am going to close with a list of organizations whose websites have information on COVID-19 and provide great advocacy tips. It is in no way meant to be exhaustive. These sites are innovative, comprehensive, easy to access, or provide helpful links to national disability organization COVID-19 websites. Be safe, everyone.
American Academy of Developmental Medicine and Dentistry (AADMD) Coronavirus Center: https://www.aadmd.org/coronavirus-center
I particularly like the COVID-19 policy statements:
- a) Visitation policy (https://www.aadmd.org/visitation-rights)
- b) Ventilator policy (https://www.aadmd.org/ventilator-rights)
Center for Public Representation (CPR): https://www.centerforpublicrep.org
Find details regarding complaints filed on behalf of individuals with disabilities against several states’ discriminatory treatment rationing protocols and hospital no-visit policies (including sample complaints, advocacy letters, and a list of state policies that provide exceptions to “no visitor” policies when necessary for people with disabilities) here: https://www.centerforpublicrep.org/covid-19-medical-rationing/?fbclid=IwAR04xScIGaq0cVC9EoyECUsh9CI4ZevSjeYYF0-894tOQziIC-2oeTh4ufA#hospital-visitor-policies
CommunicationFIRST: https://communicationfirst.org/covid-19/
This site is a good guide for legal references to federal civil rights laws, with all the federal laws in one place. It also has a toolkit which: (1) explains your communication rights, (2) provides tips on advocating for your rights, and (3) has an accommodation request form you can take to the hospital.
Green Mountain Self-Advocates Vermont (GMSA): https://www.gmsavt.org/ They have a sample letter (one they sent to their Governor) with a link to the State of New York‘s amended visitation guidance: https://www.gmsavt.org/wp-content/uploads/2020/04/GMSA-April-13-2020-Letter-to-Governor-Scott-and-Commissioner-Levine-1.pdf
National Down Syndrome Congress (NDSC): https://www.ndsccenter.org/programs-resources/covid-19-resources/
In addition to a variety of COVID-19 resources, this website contains links to national advocacy organizations including ARC US and Center for Public Representation
Self-Advocacy Association of New York State (SANYS): https://sanys.org/
This site has helpful tips on how to advocate for changes to COVID-19 hospital visitation and support policies in your state: https://www.gmsavt.org/wp-content/uploads/2020/04/Tips-On-How-To-Advocate-For-Changes-To-COVID-19-Hospital-Visitation-Support-Policies-In-Your-State.pdf
TASH-COVID-19: https://tash.org/tash-covid-19-response-and-resources/
You can find a comprehensive list of resources here, including tools for self-advocates.
In summary, be prepared if your loved one with a disability has to go to the hospital. The Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services (HHS) announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic. Do NOT be complacent. Discrimination against people with disabilities is real, and hospital policies may still be discriminatory. Advocate for a statewide policy (in your state) setting forth non-discriminatory visitor policies during COVID -19 and in the future. States still have the right to discriminate – it is a question of ensuring states and hospitals safely balance public health concerns with the obligation to ensure medical treatment equality for people with disabilities.
This is part 4 in a series. You can read part 1 here, part 2 here, and part 3 here.
TASH member and family member, Denise Quigley has advocated for the rights of people with disabilities at the Georgia Advocacy Office for nearly 25 years. Like many of us, she is concerned about the ways we can continue to support the people we stand beside while in the midst of a pandemic.