Guidance on COVID-19 Patient Visitation Policies
ICFs: US Department of Health and Human Services (HHS) - Centers for Medicare & Medicaid Services (CMS) - Center for Clinical Standards and Quality: Guidance on Visitation at Intermediate Care Facilities for Individuals with Intellectual
Disabilities (ICF/IIDs) and Psychiatric Residential Treatment Facilities (PRTFs)
(February 10, 2021) (link)
- "These recommendations ... should be followed except where they prevent a necessary accommodation. Where accommodations to meet the specific needs of a client/resident prevent implementation of a protective measure, additional levels of protection should be addressed in a person-centered manner. For example, touch-based communication may be necessary for clients/residents with combined hearing and vision impairment, but increased use of touch-based communication may necessitate higher levels of hand hygiene, respiratory protection and/or other protections that may be appropriate in such situations. Also, ICF/IIDs and PRTFs should enable visits to be conducted with an adequate degree of privacy." (p. 3)
- "Facilities should make every effort to permit individuals to visit for the following purposes: (1) compassionate care visits; (2) visits by P&As; (3) in-person supports necessary for equal access to care and effective communication under disability rights laws; and (4) outside healthcare and service providers, including providers assisting with transition. Even if the facility is otherwise limiting in-person visitation, unless the visitor has COVID-19 symptoms or refuses to comply with the facility’s infection control practices, visitation should proceed." (p. 6)
- "Additionally, each facility must comply with federal disability rights laws such as Section 504 of the Rehabilitation Act, Section 1557 of the Patient Protection and Affordable Care Act, and the Americans with Disabilities Act, as applicable. Under these laws, facilities may be obligated to permit in-person visits for individuals with disabilities in certain circumstances. For example, facilities may be required to permit entry of a designated support person to meet an individual’s disability-related needs, including, as may be appropriate in some cases, supporting an individual’s transition from an institutional setting into the community." (p. 8)
- "If a resident requires assistance to ensure effective communication (e.g., a qualified interpreter or someone to facilitate communication) and the assistance is not available by onsite staff or effective communication cannot be provided without such entry (e.g., video remote interpreting), the facility must allow the entry into the facility of a person to interpret or facilitate as stated in 42 CFR 483.420(a)(1) and (2) for ICF/IIDs and 42 CFR 483.356(c)(2) for PRTFs. These obligations do not preclude facilities from imposing legitimate safety measures that are necessary for safe operations, such as requiring such individuals to adhere to the recommended principles of COVID-19 prevention." (p. 8)
- "[I]f the resident is fully vaccinated, they can choose to have close contact (including touch) with their visitor while wearing a well-fitting face mask and performing hand-hygiene before and after." (p. 4)
- "Compassionate care visits, and visits required under federal disability rights law, should be allowed at all times, regardless of a resident’s vaccination status, the county’s COVID-19 positivity rate, or an outbreak." (p. 5)
- "[E]ach facility must comply with federal disability rights laws such as Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). For example, if a resident requires assistance to ensure effective communication (e.g., a qualified interpreter or someone to facilitate communication) and the assistance is not available by onsite staff or effective communication cannot be provided without such entry (e.g., video remote interpreting), the facility must allow the individual entry into the nursing home to interpret or facilitate, with some exceptions." (p. 6-7)
Hospitals: US Department of Health and Human Services (HHS) - Office for Civil Rights (OCR): Statement Regarding Resolution of Discrimination Complaints Filed by CommunicationFIRST and other Disability Groups Against Connecticut Hospital No-Visitor Policies
(June 9, 2020) (link)
- "Today, the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) announces that it has reached an Early Case Resolution (ECR) with the State of Connecticut after the state issued an executive order regarding non-visitation policies for short-term hospitals, outpatient clinics, and outpatient surgical facilities to ensure that people with disabilities are not denied reasonable access to needed support persons. OCR also reached an ECR with Hartford Hospital after it agreed to grant a 73-year old woman with aphasia access to support persons to help with her communication and comprehension in her treatment."
- "As part of the resolution, Connecticut is issuing an executive order to ensure that people with disabilities have reasonable access to support personnel in hospital settings in a manner that is consistent with disability rights laws and the health and safety of patients, health care providers, and support persons. The order includes establishing a statewide policy requiring hospitals and other acute care settings to permit the entrance of a designated support person for a patient with a disability and permitting family members, service-providers or other individuals knowledgeable about the needs of the person with a disability to serve as a designated support person. Where patients with a disability are in such a setting for longer than one day, they may designate two support persons, provided only one is present at a time."
This evaluation framework created by CommunicationFIRST, Arc of the United States, Autistic Self Advocacy Network, Bazelon Center for Mental Health Law, Center for Public Representation, and Disability Rights Education and Defense Fund can help you determine whether a hospital visitor policy is discriminatory.
American Academy of Developmental Medicine and Dentistry (AADMD)
COVID-19 Hospitalized Patients & Designated Support Staff Policy Statement
(April 2020) (link)
- "Regrettably, the “No Visitors” policies may result in deleterious and sub-optimal clinical outcomes .... Such designated support personnel are not passive “visitors,” they can provide vital information that can impact clinical decisions and outcomes. ... They may also provide communication support between the patient and hospital staff or implement specialized support strategies to aid the patient to comply with clinical treatments."
- "Accommodations in the policies are needed to ensure that a caregiver is permitted to be with the patient starting with admission and through to the care/treatment process. Such policies should permit a caregiver to be present to the greatest extent possible. It is further recommended that hospitals have a protocol in place for providing infection control briefings and providing appropriate PPEs to support persons."
This section lists state policies and guidance that include exceptions for no-visitor policies for disability support persons. Policies issued by Alabama, California, Connecticut, Delaware, Illinois, Maryland, Massachusetts, Minnesota, New Jersey, New York, Oregon, Pennsylvania, and Rhode Island are listed in chronological order by date of issuance (most recent first).
Alabama State Health Officer
Order Suspending Certain Public Health Gatherings Due to Risk of Infection by COVID-19
(amended January 21, 2021) (link)
- Effective October 2, 2020, all Hospitals and Nursing Home/Long Term Care Facilities (including Assisted Living and Specialty Care Assisted Living Facilities) shall ensure that each patient or resident may be accompanied by one caregiver at a time (in the case of hospitals) or receive visits from one visitor at a time (in the case of nursing homes and long term care facilities), subject to reasonable restrictions imposed on the entrance of persons because of the COVID-19 county positivity rate, the facility’s COVID-19 status, a patient’s or resident’s COVID-19 status, caregiver/visitor symptoms, lack of adherence to proper infection control practices, or other relevant factors related to the COVID-19 pandemic, consistent with the following guidance from the federal government: ...
- In addition, each facility subject to this paragraph shall post in a conspicuous location at each public entrance a statement substantially similar to the following statement: "By order of the Governor of Alabama and the State Health Officer, each patient or resident of this facility enjoys certain rights to have one caregiver or one visitor present at a time, subject to reasonable restrictions. If you have questions, you may ask to inspect the facility’s written policies concerning visitation."
Maryland Department of Health and Maryland Department of Disabilities
NOTICE - Access to Support for Patients with Disabilities in Health Care Settings
(September 24, 2020) (link)
- This Notice replaces the Notice to Patients with Disabilities in Hospital Settings from May 11, 2020.
- All licensed Maryland hospitals, related institutions, freestanding medical facilities, freestanding ambulatory care facilities, chronic disease centers, hospice care facilities, comprehensive rehabilitation facilities, nursing homes, and assisted living programs (collectively health care providers) shall adopt policies on or before October 1, 2020 that both comply with applicable U.S. Centers for Disease Control and Prevention (CDC) guidance and State and federal regulations and recognize the rights and needs of individuals with disabilities.
- All health care providers shall provide a copy of their policies regarding support persons for those with disabilities to all patients and shall post a copy of this notice in an area accessible to all patients. In addition, health care providers shall post a copy of the attached notice regarding remedies for violation of this notice in an area accessible to patients and shall provide a copy to all patients.
- A support person may be a family member, personal care assistant, similar disability service provider, or other individual knowledgeable about the management or care of the patient who is authorized to assist the patient in making decisions.
- A patient may designate up to two support persons during their stay, but only one may be present at any given time.
- Patients with disabilities, regardless of diagnosis or symptoms of COVID-19, are permitted to have access to support persons.
- Support persons shall be provided appropriate PPE, including instruction on how to utilize and conserve PPE. Support persons will conform with PPE procedures.
- Support persons are permitted to access restrooms, food, and drink while in the health care facility.
- The health care facility support person policy shall contain point of contact information. Health care facilities shall be capable of processing support person requests during all operational hours.
- If you believe that one of the listed health care providers is violating the Access Notice, you may file a complaint with the Maryland Department of Health’s Office of Health Care Quality by following the process described here: https://health.maryland.gov/ohcq/Pages/Complaints.aspx.
Connecticut Department of Public Health
Order of the Commissioner Modifying State Regulations
(June 9, 2020) (link)
- Patients in such Facility with disabilities that may include, but not be limited to, altered mental status, physical, intellectual or cognitive disability, communication barriers or behavioral concerns, who need assistance due to the specifics of their disability, may have one designated support person with them to support their disability related needs.
- Such designated support person may be a family member, personal care assistant, similar disability service provider, or other individual knowledgeable about the management of their care, to physically or emotionally assist them or to ensure effective communication during their stay in such Facility, provided proper precautions are taken to contain the spread of infection.
- When the period of time any such patient with disabilities will remain in such Facility will be longer than one day, such patient or his or her family or caregiver may designate two support people, provided only one support person may be present at a time. ...
- The Facility shall provide appropriate Personal Protective Equipment (PPE) to be worn by the designated support person as instructed by the Facility for the duration of the visit. If the Facility does not have PPE for the support person, PPE supplied by the support person that the Facility finds adequate may be used. ... Any such support person who leaves the Facility shall be screened as provided in subsection (d) above upon his or her re-entry.
Minnesota Department of Health
Access to Support in Hospital Settings: Patients with Disabilities and Pediatric Patients
(June 2020; updated March 2, 2021) (link to PDF)
- [W]e ask all licensed Minnesota hospitals to adopt visitation policies that recognize the needs of people with disabilities and pediatric patients. These policies should be made available to the public and, upon request, to any interested person. Such policies should include language, at a minimum, to:
- Make it possible for at least one support person – whether a family member, support professional, or other person of the patient’s choice – to go with a person with disabilities to the hospital, visit them in the hospital, and stay with them in the hospital, as long as they follow hospital policy.
- Make it possible for at least one parent or legal guardian to go with pediatric patients to the hospital, visit them in the hospital, and stay with them in the hospital, as long as they follow hospital policy.
- Let the patient name a support person. If the patient is not able to choose a support person, have another way to name a support person who could include people legally authorized to make decision for that patient, family members, personal care assistants, disability service providers, or any other person who may be able to help the patient.
- Establish reasonable accommodations for children under the age of 2 and people with disabilities who are not able to wear a mask due to their disability, such as a medical condition or sensory issue. Policy should ensure that effective communication is available to people who are deaf or hard of hearing or for whom a mask would be a barrier to communication. For more information, visit Best Practices for Masks: Considerations for People with Disabilities and Special Health Needs (www.health.state.mn.us/diseases/coronavirus/guidemasks.pdf).
- Establish a way for people with disabilities to propose other reasonable accommodations that also follow the hospital’s infection control policy. Create options for letting support people give support remotely if the support person does not meet COVID-19 screening criteria.
- Hospitals should also adopt policies for communicating with families, support people, and/or support professionals of patients with disabilities who do not have a support person at the bedside. Hospitals should explain these policies to the support people before the patients arrive at the hospital, whenever possible. ...
- The hospital visitation policy should explain how a person can file an internal complaint with the hospital if the person believes the hospital did not provide reasonable accommodation to a person with a disability. The policy also should include information on how a person can file a complaint of disability discrimination with the Office of Civil Rights and the Minnesota Department of Human Rights.
Pennsylvania Department of Public Health
Guidance on Hospitals’ Responses to COVID-19
(May 23, 2020; updated December 23, 2020, and February 22, 2021) (link)
- While hospitals are entitled to discretion in the implementation of visitor policies, the terms of those policies must adhere to Federal and State law. Specifically, a hospital, through its visitor policy, cannot deny access to an attendant, caregiver or family member of a patient who has an intellectual, developmental or cognitive disability, communication barrier, or behavioral concerns.
Illinois Department of Public Health
Support Persons in Health Care Facilities (including hospitals)
(May 15, 2020) (link)
- ... clarifies that health care facilities (including hospitals) should allow patients with intellectual and/or developmental disabilities or cognitive impairments to be accompanied by a support person determined to be essential to their care. Persons with disabilities should be provided reasonable accommodations that afford meaningful access to information and an equal opportunity to benefit from the treatment. Individuals with intellectual and/or developmental disabilities (I/DD) may require accommodations in a health care facility that include permitting the presence of a support person, such as a guardian, family member, caregiver, or paid support worker, provided that essential precautions can be taken to contain the spread of infection.
- The use of effective communication is critical to a patient’s autonomy and ability to participate in their care. ...
- The patient’s support person may be necessary to:
· facilitate communication between the individual and hospital personnel;
· ascertain the individual’s pertinent medical history;
· secure from the individual “informed consent” for treatment;
· ensure the individual’s participation in care planning;
· provide emotional and sensory supports; and
· provide the individual with specialized strategies to reduce anxiety and the incidence of harmful behaviors.
- Health care facilities (including hospitals), therefore, should establish a protocol that allows at least one identified support person to be present with any individual with I/DD in an emergency room and to accompany those admitted to the hospital. For hospitalized patients, especially those with prolonged hospitalizations, the patient or legal guardian should be allowed to designate two support people, but only one support person may be present at any given time.
- ... The support person must adhere to facility policies, wear a designated identification tag provided by the facility, and comply with any instructions on personal protective equipment (PPE), also to be provided by the facility. Failure to comply with any of these measures may result in the support person being denied access to the patient, wherein the patient would be allowed to identify another support person.
New Jersey Department of Health
Memo to Acute Care Hospitals re Support Person Permitted for a Patient with a Disability
(updated May 12, 2020; first version issued April 25, 2020) (link to PDF)
- "The Department of Health (Department) considers a designated support person essential to patient care for patients with disabilities where the disability may be due to altered mental status, intellectual or cognitive disability, cognitive impairment including dementia, communication barriers or behavioral concerns. These patients include those with a developmental disability as defined at N.J.A.C. 10:44A and those with a psychiatric diagnosis receiving services pursuant to N.J.A.C. 10:37E. Therefore, hospitals are required to allow a designated support person to be with' the disabled patient, in both the emergency room and during hospitalization, regardless of the reason for the hospitalization, for patients for whom a support person has been determined to be medically necessary. For these patients, especially with prolonged hospitalizations, the patient or family/caregiver may designate two support people; but only one support person may be present at a time."
- "The disabled patient's support person must be asymptomatic for COVID-19 and must not be a suspect or recently confirmed case. Additionally, hospital staff must screen the support person for symptoms of COVID-19 (e.g., fever, cough, or shortness of breath), conduct a temperature check prior to entering the clinical area, and every twelve hours thereafter, and screen for potential exposures to individuals testing positive for COVID19. Personal Protective Equipment (PPE) should be given to and worn by the designated support person. Once in the unit, the designated support person must have extremely limited access to other areas of the hospital and not be permitted to leave and re-enter the hospital without being rescreened. Hospitals should encourage support persons to remain in the Hospital, if possible, in the interest of preserving PPE."
- The Division of Public Health does not consider support persons for individuals with intellectual or
developmental disabilities to be visitors. For patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities (I/DD), and patients with cognitive impairments including dementia, the Department considers one support person at a time as essential to patient care in the emergency room or during hospitalization. For these hospitalized patients who have intellectual and/or developmental disabilities, especially with prolonged hospitalizations, the patient or family/caregiver may designate two support people; but only one support person may be present at a time. This support person can be the patient’s family, caregiver, or another person they chose. In these settings, the person will be the only support person allowed to be present during the patient’s care. ...
- [T]he the support person should:
- Wear a surgical or procedure mask throughout their time in the hospital,
- Practice scrupulous hand hygiene,
- Practice social distancing within the room as much as possible, and
- Remain in the patient’s room except for entrance and exit from the hospital. ...
- If a support person has confirmed or suspected COVID-19 or presents with or develops symptoms of COVID-19, they should be excluded from the facility. In this situation, through informed decision
making the patient and family may choose to select a different support person.
Rhode Island Department of Health
Hospital Visitation Guidance
(May 8, 2020; updated November 2, 2020, and February 19, 2021) (link)
- When a support person is essential to the care of a patient with a disability, including patients who have altered mental status, communication barriers, or behavioral concerns (such as patients with intellectual and/or developmental disabilities, dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person. The support person can facilitate communication with hospital staff, accessibility, and equal access to treatment and/or the provision of informed consent in accordance with the civil rights of patients with disabilities. A support person may include a family member, guardian, community support provider, peer support specialist, or personal care attendant. In some instances, there may be a need to permit the designation of two support people to ease the burden on any one individual support person. Patients with a disability are allowed to use assistive technology (e.g., smart phones; tablets; and other communication devices, such as assistive technology and communication boards), to facilitate communication and ensure equal access.
Ohio Department of Developmental Disabilities
Guidance: COVID-19 Standards of Care for Vulnerable Populations
(May 6, 2020; updated June 29, 2020) (link)
- A family member or caregiver (i.e., patient care assistant, direct support professional, patient advocate, etc.) should be allowed bedside access for patients who may require assistance with making important medical decisions, activities of daily living, behavioral support needs, or to facilitate communication. In situations where this is not possible or that pose a significant barrier to infection control, alternate arrangements should be made to meet the patient’s unique needs. A caregiver’s active role is essential to the patient’s health outcomes.
California Department of Public Health
Visitor Limitations Guidance to All Facilities
(May 2, 2020; updated August 7, 2020, and March 16, 2021) (link)
- This AFL clarifies that health facilities may permit a support person to accompany a patient for whom a support person has been determined to be essential to the care of the patient (medically necessary), including patients with physical, intellectual, and/or developmental disabilities and patients with cognitive impairments.
- … considerations must be made for the safety of health facility staff and patients, resulting in many health care facilities suspending visitation, except when medically necessary or essential to the care of the patient. … CDPH also recognizes the importance of ensuring people with disabilities receive the support they need while hospitalized. CDPH considers visitors an essential part of patient care and recovery.
Patients with Physical, Intellectual, and/or Developmental Disabilities and Patients Cognitive Impairments
- The presence of a support person is essential to patients with physical, intellectual, and/or developmental disabilities and patients with cognitive impairments. CDPH recommends that one support person be allowed to be present with the patient when medically necessary.
- For hospitalized patients, especially with prolonged hospitalization, the patient or family/patient representative may designate two support people, but only one support person may be present at a time.
Massachusetts Attorney General
Rights of Disabled Persons to Accommodations During COVID-19 Crisis
(April 27, 2020) (link to PDF)
- "People with disabilities may require additional assistance and safeguards to work, live, and access critical resources safely during the COVID-19 public health crisis. Individuals with underlying conditions who believe they need additional protection can seek “reasonable accommodations” in employment, housing, and places of public accommodation. See M.G.L. ch.151B, § 4; M.G.L. ch. 272, § 98; 42 U.S.C. § 12101, et seq. Broadly, a reasonable accommodation is a change to a physical space, policy, rule, or process that permits a disabled person equal access and enjoyment of her rights."
- "3. If I need to be hospitalized for COVID or some other reason, will my PCA, caregiver, or family member be able to accompany/visit me? Hospitals are generally not permitting any visitors at this time in order to protect against COVID-19 exposure. As a person with a disability, you can request an exception to this policy for your PCA, caregiver, or family member if it will be difficult for you to get the care you need without their presence. Hospitals should consider these requests, and grant them where necessary to the provision of equal care to the disabled person, and where the additional risk does not create an undue burden. If your PCA, caregiver, or family member can provide you the assistance you need remotely, hospital staff should work with you to make this possible."
Oregon Health Authority
COVID-19 Guidance for Entry into Acute Health Care Facilities
(April 23, 2020; updated June 8, 2020) (link to PDF)
- [Directs certain acute health care facilities (including hospitals) to have policies and procedures that]: "Guarantee that the following individuals are allowed to enter the facility, even if the individuals do not meet screening criteria, if the individuals are compliant with the facility’s requirements regarding personal protective equipment and other infection control measures and do not pose a separate safety risk as determined by the facility: A caregiver or attendant of a patient who needs assistance due to a language barrier or the patient’s disability, whether that disability is physical, developmental, intellectual, cognitive, behavioral or is related to altered mental status or communication, whose presence will assist the person with the disability in receiving treatment, ensure the safety of the patient or facility staff, or who must assist with activities of daily living. ..."
- "Hospitals are required to permit a patient support person at the patient bedside for
- Patients in labor and delivery, and the remainder of the patients' admission;
- Pediatric patients;
- Patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities and patients with cognitive impairments including dementia; and
- Patients in immediate end-of-life situations."
- "During this unprecedented time, support persons for the patients described above may be critical to avoid negative health outcomes unrelated to the COVID-19 public health emergency."
- "For hospitalized pediatric patients, especially with prolonged hospitalizations, the patient or family/caregiver may designate two support people; but only one support person may be present at a time."
- "For patients for whom a support person has been determined to be essential to the care of the patient (medically necessary) including patients with intellectual and/or developmental disabilities (I/DD), and patients with cognitive impairments including dementia, the Department considers one support person at a time as essential to patient care in the emergency room or during hospitalization. For these hospitalized patients, especially with prolonged hospitalizations, the patient or family/caregiver may designate two support people; but only one support person may be present at a time. This support person can be the patient’s family, caregiver, or another person they chose. In these settings, the person will be the only support person allowed to be present during the patient’s care. This restriction must be explained to the patient and support person in plain terms, upon arrival or, ideally, prior to arriving at the hospital. Hospital staff should ensure that patients fully understand this restriction, allowing them to decide who they wish to identify as their support person. Individuals age 70 years or older, are not encouraged to be support persons at this time due to increased risk of COVID-19 infection."
- "The support person of a patient with confirmed or suspected COVID-19 who has been a close contact of the patient has potentially already been exposed to COVID-19. These support persons should:
- Wear a surgical or procedure mask throughout their time in the hospital,
- Practice scrupulous hand hygiene,
- Remain in the patient’s room except for entrance and exit from the hospital; and
- While in the room, a gown and gloves should be worn to prevent the person’s hands or clothes from becoming contaminated. Eye protection should be worn while in the room if available."
- "If a support person has confirmed or suspected COVID-19 or presents with or develops symptoms of COVID-19, they should be excluded from the facility. In this situation, through informed decision making the patient and family may choose to select a different support person."
- "Hospitals should develop clear protocols for communicating with family members or caregivers of any patient who do not have a support person at the bedside. This should include considerations for assisting patient and family member communication through remote methods when possible, for example, via phone or video call."
Guidance on Other Types of COVID-19 Disability Discrimination
- "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." (p. 1)
- "Persons with disabilities, with limited English skills, or needing religious accommodations should not be put at the end of the line for health services during emergencies. Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism." (p. 1)
- "Government officials, health care providers, and covered entities should not overlook their obligations under federal civil rights laws to help ensure all segments of the community are served by:
- Providing effective communication with individuals who are deaf, hard of hearing, blind, have low vision, or have speech disabilities through the use of qualified interpreters, picture boards, and other means;
- Providing meaningful access to programs and information to individuals with limited English proficiency through the use of qualified interpreters and through other means;
- Making emergency messaging available in plain language and in languages prevalent in the affected area(s) and in multiple formats, such as audio, large print, and captioning, and ensuring that websites providing emergency-related information are accessible;
- Addressing the needs of individuals with disabilities, including individuals with mobility impairments, individuals who use assistive devices, auxiliary aids, or durable medical equipment, individuals with impaired sensory, manual, and speaking skills, and individuals with immunosuppressed conditions including HIV/AIDS in emergency planning." (p. 2)
Guiding Principles for States and Hospitals to Avoid Disability Discrimination in COVID-19 Treatment Rationing
by Ninety Disability Rights Organizations
(April 3, 2020) (link to PDF)
- "This document from organizations with expertise in federal disability rights laws provides a more detailed explanation of how the requirements set forth in the HHS Bulletin would apply and how states and health care providers can take steps to modify policies and practices to avoid disability discrimination.” (p. 1)
- "People with disabilities must have an equal opportunity to receive life-sustaining treatment." (p. 1)
- "The fact that an individual with a disability requires support (minimal or extensive) to perform certain activities of daily living is not relevant to a medical analysis of whether that individual can respond to treatment." (p. 1)
- "Doctors and triage teams must refrain from employing assumptions and stereotypes about the worth or quality of the life of a person with a disability in making decisions about medical treatment." (p. 1)
- "Individuals with disabilities who use ventilators in their daily lives should be allowed to continue to use this personal equipment if they receive COVID-19 treatment at a hospital." (p. 2)
- "Social characteristics, including but not limited to race, ethnicity, gender, national origin, sexual orientation, religious affiliation, and disability unrelated to near-term survival, should not be used as criteria in making resource or service allocation decisions during public health emergencies." (p. 2)
- "All persons should be eligible for, and qualified to receive, lifesaving care regardless of the presence of an underlying disability or co-morbid conditions, unless it is clear that the person will not survive in the immediate term or the treatment is contra-indicated." (p. 3)
- "Treatment allocation decisions may not be made based on misguided assumptions that people with disabilities experience a lower quality of life or that their lives are not worth living." (p. 3)
- "The mere fact that a patient may have a diagnosis of, for example, intellectual disability, autism, cystic fibrosis, diabetes, spina bifida, spinal muscular atrophy, or schizophrenia cannot be a basis (in part or whole) for denying care or making that person a lower priority to receive treatment." (p. 3)
- "Generalized assumptions must be avoided and doctors must instead focus on the most current and best available objective medical evidence available to determine an individual patient’s ability to respond to treatment. ... There must be a thorough, individualized review of each patient." (p. 3)
- "Value judgments about the fact that a patient may require extensive support in activities of daily living, uses augmentative or alternative communication, uses a wheelchair, or experiences a psychiatric disability are irrelevant to decisions about whether such individuals should receive life-sustaining treatment." (p. 3)
- "Reasonable modifications must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment. These include interpreter services or other modifications or additional services needed due to a disability. They also include permitting a person to continue using a ventilator for additional time where an underlying disability means that additional time is necessary for recovery." (p. 4)
- "Providing effective communication to individuals with disabilities who are patients or family members of patients is critical to ensuring compliance with federal law. Without effective communication, the patient’s autonomy and ability to participate in their care is taken away and doctors risk substituting misplaced assumptions and biases about the individual with a disability in place of verifiable information and medical history." (p. 4)
- "Providing effective communication to patients is critical and must not be overlooked during this pandemic. Without providing effective communication, it is impossible to avoid discrimination against patients with disabilities and/or their family members." (p. 5)
- "If the individual requires an accommodation that involves the presence of a family member, personal care assistant, communicator, or similar disability service provider, knowledgeable about the management of their care and/or able to assist them with communicating their needs, to assist them during their hospitalization, this should be allowed provided that proper precautions can reasonably be taken to contain the spread of infection." (p. 5)