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Guidance on COVID-19 Patient Visitation Policies

FEDERAL GOVERNMENT

Healthcare Providers:  US Department of Health and Human Services: FAQs for Healthcare Providers during the COVID-19 Public Health Emergency: Federal Civil Rights Protections for Individuals with Disabilities under Section 504 and Section 1557
(February 4, 2022) (link)

  • "OCR is providing this FAQ guidance on Federal civil rights obligations under Section 504 and Section 1557 in light of the continuing public health and national emergency concerning the Coronavirus Disease 2019 (COVID-19)."
  • "For example, a hospital is prohibited from having a categorical exclusion denying life-saving care to individuals with Down syndrome based on a judgment that people without Down syndrome would be a greater benefit to society or would experience a richer or fuller life than those with Down syndrome."
  • "The patient’s pre-existing disability or diagnosis should not form the basis for decisions regarding the allocation of scarce treatment, unless that underlying condition is so severe that it would prevent the treatment sought from being effective or would prevent the patient from surviving until discharge from the hospital or shortly thereafter.  Further, when mortality predictions are based on a patient’s underlying disability, and not the condition for which they need immediate care, the less grounded in objective medical evidence they are likely to be, as critical care providers are not likely to have expertise concerning the life expectancy of every underlying condition patients have."
  • "If, as part of its Crisis Standards of Care, a hospital is using an assessment tool that unnecessarily screens out or tends to screen out individuals with disabilities from the opportunity to benefit from an aid, benefit, or service, and alternative tools are not available, a hospital may need to make a reasonable modification in its use of the assessment tool unless doing so would cause a fundamental alteration or impose an undue financial and administrative burden. For example, the Glasgow Coma Scale considers whether a person’s speech is comprehensible and whether they obey commands for movement. Someone with cerebral palsy may have difficulty speaking or moving as part of their underlying disability, which is not the condition that caused them to seek treatment at a hospital. Adjustments must be made to ensure that such a person’s pre-existing condition, and the symptoms of that condition, are not considered when using the Glasgow Coma Scale to evaluate whether they qualify for treatment."
  • "Individuals with disabilities may not be denied an equal opportunity to participate in and benefit from healthcare programs and services. During the COVID-19 public health emergency, a provider may not refuse to admit for COVID-19 treatment a patient with a disability who may require more services or resources than other patients with COVID-19, as such a denial would prevent the patient with a disability from having an opportunity to benefit from care that is equal to the opportunity provided to others, on the basis of a disability."
  • "Some people have disabilities that prevent them from providing their medical history or understanding medical decisions or directions. Permitting a patient or resident with a disability to use a support person when necessary to have an equal opportunity to obtain and benefit from healthcare services is a reasonable modification that generally must be provided unless it would fundamentally alter the nature of the service, program, or activity or impose an undue financial and administrative burden."
  • "Where the individual is entitled to an in-person support person, covered entities should take necessary steps to allow the support person to be present when needed.  Such steps may include modifying visiting hours and visitation restriction policies."
  • "In addition, the use of a designated support person by an individual with a disability for decision-making and tasks other than effective communication does not eliminate the responsibility of the setting to ensure effective communication and provide appropriate auxiliary aids and services to individuals with disabilities when necessary to provide effective communication. Covered entities are required to take steps to ensure that their communications with people with disabilities are as effective as communications with others, except where a covered entity can show that providing effective communication would fundamentally alter the nature of the program or activity in question or would result in an undue financial or administrative burden on the covered entity. Covered entities must provide appropriate auxiliary aids and services, such as alternative formats and sign language interpreters, where necessary for effective communication."

Hospitals and Medical Facilities:  US Department of Justice: COVID-19 and the Americans with Disabilities Act
(January 5, 2022) (link)

  • "Can a hospital or medical facility exclude all 'visitors' even where, due to a patient's disability, the patient needs help from a family member, companion, or aide in order to equally access care?"
  • ANSWER: NO
  • "To limit the spread of COVID-19, medical providers have changed many of their policies, including restricting non-patients from entering health care facilities. However, where these policies do not account for the needs of people with disabilities, they may result in unequal care and violate the ADA. For instance, where a patient’s disability prevents them from providing their medical history or understanding medical decisions or directions, the medical provider should explore whether a modification to its visitor policy may be safely carried out."
  • "Several important limitations apply. Not every person with a disability needs someone with them in order to equally access medical care. For those who do not, excluding a companion does not violate the ADA. Also, the ADA recognizes that protecting the rights of individuals with disabilities may need to be balanced with other safety concerns. For instance, the ADA allows health care providers to impose “legitimate safety requirements” that are necessary for safe operation. But a blanket ban on all non-patients in all care settings does not fall into this narrow category—even in the midst of COVID-19. Where the exclusion is necessary from a public health perspective, medical providers should think creatively about how to best serve the needs of the patient with a disability."
  • "EXAMPLE: An adult with Down Syndrome who cannot speak has severe chest pain and goes to the hospital with his parent. Due to COVID-era restrictions on visitors, the hospital stops the patient’s parent from joining him in the hospital’s Emergency Department, resulting in delayed treatment and critical medical history not being communicated to the medical team. This is a violation of the ADA."
  • "EXAMPLE: A person with severely limited mobility is admitted to a hospital for appendicitis. This patient would like his adult daughter to accompany him during his hospital stay. In this case, the ADA would not require the hospital to modify its COVID-era “visitor policy” to permit the daughter to enter because the daughter’s presence plays no special role in ensuring that the patient receives equal access to care."
  • "EXAMPLE: The spouse of a patient who is being treated for a traumatic brain injury tested positive for COVID-19 two days ago. The medical office providing rehabilitation services is justified under the ADA in excluding the spouse from entering the facility. However, the provider should work with the spouse, including through the use of technology, to allow the spouse’s remote participation to ensure that the patient receives equal access to care."

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)

Nursing Homes:  US Department of Health and Human Services (HHS) - Centers for Medicare & Medicaid Services (CMS): Guidance on COVID-19 Nursing Home Visitation
(revised March 10, 2022 here) (September 17, 2020 version here)

  • "Visitation is allowed for all residents at all times." (p. 1)
  • "[W]e remind stakeholders that, per 42 CFR § 483.10(f)(2), the resident has the right to make choices about aspects of his or her life in the facility that are significant to the resident. We further note that residents may deny or withdraw consent for a visit at any time, per 42 CFR § 483.10(f)(4)(ii) and (iii). Therefore, if a visitor, resident, or their representative is aware of the risks associated with visitation, and the visit occurs in a manner that does not place other residents at risk (e.g., in the resident’s room), the resident must be allowed to receive visitors as he/she chooses." (p. 2-3)
  • "Facilities must allow indoor visitation at all times and for all residents as permitted under the regulations. While previously acceptable during the PHE, facilities can no longer limit the frequency and length of visits for residents, the number of visitors, or require advance scheduling of visits." (p. 4)
  • "Residents, regardless of vaccination status, can choose not to wear face coverings or masks when other residents are not present and have close contact (including touch) with their visitor." (p. 4)
  • "Failure to facilitate visitation, per 42 CFR § 483.10(f)(4), which states 'The resident has a right to receive visitors of his or her choosing at the time of his or her choosing, subject to the resident's right to deny visitation when applicable, and in a manner that does not impose on the rights of another resident,' would constitute a potential violation and the facility would be subject to citation and enforcement actions." (p. 6)
  • "[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). ... In addition, 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. 7)
  • "Facilities must permit residents to leave the facility as they choose." (p. 8)
  • "Isolation and limited visitation can be traumatic for residents, resulting in physical and psychosocial decline. So, we know it can lead to worse outcomes for people in nursing homes. Furthermore, we know visitation can occur in a manner that doesn’t place other residents at increased risk for COVID-19 by adhering to the practices for infection prevention, such as physical distancing, masking, and frequent hand hygiene. There are also a variety of ways that visitation can be structured to reduce the risk of COVID-19 spreading. So, CMS believes it is critical for residents to receive visits from their friends, family, and loved ones in a manner that does not impose on the rights of another resident." (FAQs, p. 5)

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."

Organization Guidance

Is Your Hospital Visitor Policy Discriminatory?
(link)

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."

State Guidance

This section lists state policies, guidance, statutes, and regulations 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, Rhode Island, and Virginia are listed in chronological order (most recent first). 

Virginia Legislative Statute on Designated Support Persons
(signed into law March 18, 2021) (link)

Excerpts

  • "Designated support person" means a person who is 18 years of age or older; knowledgeable about the needs of a person with a disability; and designated, orally or in writing, by the person with a disability or his guardian, authorized representative, or care provider to provide support and assistance necessary due to the specifics of the person's disability to the person with a disability at any time during which health care services are provided.
  • "Support and assistance necessary due to the specifics of the person's disability" means support and assistance, including assistance with activities of daily living, communication, decision-making, and other supports, that is (i) necessary due to the absence, loss, diminution, or impairment of a physical, sensory, behavioral, cognitive, or emotional function of the person due to the specifics of his disability; (ii) provided by a designated support person; (iii) ongoing; and (iv) necessary for the care of, and to afford meaningful access to health care for, the person with a disability.
  • Every medical care facility shall allow a person with a disability who requires support and assistance necessary due to the specifics of the person's disability to be accompanied by a designated support person who will provide support and assistance necessary due to the specifics of the person's disability to the person with a disability during an admission. In any case in which the duration of the admission lasts more than 24 hours, the person with a disability may designate more than one designated support person. However, no medical care facility shall be required to allow more than one designated support person to be present with a person with a disability at any time. ...
  • Every medical care facility shall (i) establish protocols to inform patients, at the time of admission, of the right of a person with a disability who requires support and assistance necessary due to the specifics of the person's disability to be accompanied by a designated support person for the purpose of providing support and assistance necessary due to the specifics of the person's disability and (ii) develop and make available to a patient, the patient's guardian, the patient's authorized representative, or the person's care provider upon request of the patient, guardian, authorized representative, or care provider written information regarding the right of a person with a disability who requires support and assistance necessary due to the specifics of the person's disability to be accompanied by a designated support person and policies related thereto. Every medical care facility shall also make such written information available to the public on its website.
  • The Department shall develop and make available on its website information for the public regarding (i) the right of a person with a disability who requires support and assistance necessary due to the specifics of the person's disability to be accompanied by a designated support person who will provide support and assistance necessary due to the specifics of the person's disability to the person with a disability during an admission and (ii) the requirements of this section.

Alabama State Health Officer 
Order Suspending Certain Public Health Gatherings Due to Risk of Infection by COVID-19
(amended January 21, 2021) (link)

Excerpts

  • 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)

Excerpts

  • 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)

Excerpts

  • 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)

Excerpt

  • [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)

Excerpt

  • 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)

Excerpts

  • ... 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)

Excerpts

  • "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."

Delaware Department of Health and Social Services
Hospital Guidance
(May 8, 2020) (link)

Excerpts

  • 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)

Excerpts

  • 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)

Excerpt

  • 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)

Excerpts

  • 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)

Excerpts

  • "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)

Excerpt

  • [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. ..."

New York State Department of Health
COVID-19 Updated Guidance for Hospital Operators Regarding Visitation
(April 10, 2020, updated May 20, 2020) (link to PDF) (see also June 17, 2020 general hospital visitation guidance here)

Excerpts

  • "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

US Department of Health and Human Services - Office of Civil Rights
BULLETIN on Civil Rights and COVID-19
(March 28, 2020, revised April 1 and 3, 2020) (link to PDF)

Excerpts

  • "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)

Excerpts

  • "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)