AJE is very happy to share this important information from Family Voices about Disability Bias in Access to Medical Care We hope DC families find this information helpful.
On March 28, 2020, the Office of Civil Rights (OCR) of Health and Human Services (HHS) issued a bulletin “to ensure that entities covered by civil rights authorities keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs, including in the provision of health care services during COVID-19.”
OCR enforces 4 key laws for those with disabilities which prohibit discrimination in HHS-funded health programs or activities. These laws, like other civil rights statutes that OCR enforces, remain in effect during the pandemic:
- Americans with Disabilities Act (the “ADA”)
- Section 504 of the Rehabilitation Act,
- Age Discrimination Act
- Section 1557 of the Affordable Care Act
A couple of key points
- 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 and his or her circumstances, based on the best available objective medical evidence.
The following two resources, created by the Center for Dignity in Healthcare for People with Disabilities and based on the above HHS OCR bulletin, are straight-forward and accessible for you, your loved one, providers, communities, and policymakers:
- For people with disabilities: Do You Know Your Rights with COVID-19?
- For health care providers: Safeguard Against Disability Discrimination During COVID-19
The Disability Rights Education and Defense Fund has a COVID-19 Advocacy & Resources web page with MANY links, including their Know Your Disability Healthcare Rights sheets in several languages.
Finally, we at AJE know that many individuals and families we work with access care via a supported decision-making model where family (or supporter) presence is important to them, and they have worried about receiving care without their “team” there to support them during the COVID-19 response.
If you are unfamiliar with the term “Family Presence” it is simply the patient-and-family-centered way to describe the reliance and need for physical presence of family (as defined by the patient) at the bedside to promote trust, communication, involvement in caretaking, and shared decision-making during a hospitalization.
Do you or your loved ones have the “right” to family presence and family-centered care during COVID-19? YES!
Public safety in a pandemic necessitates modification of delivery of care, however, the legal and civil rights of those with disabilities require reasonable accommodations and non-discrimination.
- Disability Nondiscrimination in Health Care and Community Life during the COVID-19 Pandemic by the Disability Rights Education and Defense Fund is a comprehensive, easy-to-read document in question and answer format.
- This COVID-19 Communication Rights Toolkit includes links to printable Patient Accommodations Request Forms in English, Spanish, and soon Chinese.
The HHS OCR Bulletin: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)