Guidance on COVID-19 Patient Visitation Policies
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 answer that question.
American Academy of Developmental Medicine and Dentistry (AADMD)
COVID-19 Hospitalized Patients & Designated Support Staff Policy Statement
(April 2020) (link to PDF)
- "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 California, Illinois, Maryland, Massachusetts, New Jersey, New York, Oregon, and Rhode Island are listed in chronological order by date of issuance (most recent first).
Illinois Department of Public Health
Support Persons in Health Care Facilities (including hospitals)
(May 15, 2020) (link to PDF)
- ... 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."
Maryland Departments of Disabilities and Health
Access to Support for Patients with Disabilities in Hospital Settings
(May 11, 2020) (link)
- [Hospital visitor] policies shall include, at a minimum:
- Provisions authorizing support persons to accompany to, visit, and stay in the hospital with individuals with disabilities.
- Provisions for the designation of support persons who may visit individuals with disabilities during their hospital stay.
- Provisions defining support persons as those who are legally authorized to make decisions for that individual, family members, personal care assistants, or disability service providers.
- Provisions establishing a process for individuals with disabilities to propose other reasonable accommodations that also comply with the hospital’s infection control policy.
- 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 (I/DD), dementia, and/or behavioral health needs), accommodations for the patient should be made so that the patient can be accompanied by the support person. These accommodations can facilitate communication with hospital staff, accessibility, 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, while still permitting only one support person to be present at a time.
California Department of Public Health
Visitor Limitations Guidance to All Facilities
(May 2, 2020) (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) (link to PDF)
[Directs certain acute health care facilities (including hospitals) to adopt policies on access and screening of “essential individuals,” who are defined to include (among others)]:
- Health care interpreters
- Legal guardians or representatives, but only if in-person visitation is necessary for legal reasons that cannot be delayed
- Individuals authorized by law to investigate allegations of abuse or neglect
- Parents or guardians of patients under the age of 18 years
- Guardians or caregivers of patients who need assistance due to their disability if in-person visitation is necessary to:
- Facilitate treatment
- Ensure the safety of the patient or facility staff
“Policies and Procedures regarding visitation requirements for individuals other than health care workers and facility personnel must:
- Refuse visitation to a patient who is being treated for COVID-19, however, exceptions may be made in the following cases:
- End-of-life care as determined by the medical provider in charge of patient’s care
- Pediatric hospitalized patients
- Patients who need assistance due to their disability. This could include needs due to altered mental status, intellectual or cognitive disability, communication barriers, or behavioral concerns
- Permit no more than one essential individual to visit a patient on any day except as provided below.
- Permit no more than two essential individuals to visit a patient on any day in the following situations:
- Pediatric hospitalized patients may have two parent or guardian visitors.
- Patients who are at the end-of-life as determined by the medical provider in charge of patient’s care, may have two visitors"
New York State Department of Health
COVID-19 Updated Guidance for Hospital Operators Regarding Visitation
(April 10, 2020) (link to PDF)
- "Hospitals are required to permit a patient support person at the patient bedside for
- Patients in labor and delivery;
- 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."
- "During this unprecedented time, a support person 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 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)