Hospital Visitation Rights

In March 2020, Dr. Seth Keller, the co-chair of the NTG, began a national campaign to address a significant problem that emanated from the national emergency related to the COVID-19 pandemic. Working with several colleagues and national organizations, he organized a campaign and arrived at a consensus-driven Statement issued by the American Academy on Developmental Medicine and Dentistry (AADMD).  Backed by the NTG, the campaign has gained traction and has spread nationally.  

At issue were restrictive policies established or enforced by hospitals dealing with patients with COVID-19 infection, which prohibited family members, significant others, or agency care personnel to be present in the same room as the hospitalized person with an intellectual disability. These policies lead to many problems for hospital personnel who were unfamiliar with persons with intellectual disability and how to most effectively provide treatment and personal care. Such situations were reported in a number of newspapers and other media (see, for example,  stories from New Jersey, Connecticut, and Chicago), and recognized as violations of rights under the Americans with Disabilities Act.  See similar situations in Canada.

Since the Statement was first promulgated and circulated, the number of states that have begun to address this problem and issue clarifying policies permitting accompanying adults to be present in the rooms of patients with an intellectual disability have increased.  Similarly, many national and state organizations have signed as supporters of the Statement.  An example of what one state has done, is this story which appeared in the New York Times, 'New Policy Eases Visitation for Patients with Disabilities'.

The following states now have such policies:

  • Alabama:  Order of the State Health Office, Hospital visitor policy at paragraph 11 (4/28/20)

  • California:  California Department of Public Health, Visitor Limitations Guidance (5/2/20)

  • Connecticut: Order from the Department of Public Health (6/9/20)

  • Delaware:  Department of Health and Social Services Hospital Guidance (5/8/20)

  • Illinois:  Illinois Department of Public Health, Support Persons in Health Care Facilities (including hospitals) (5/15/20)

  • Maryland:  Department of Disabilities & Department of Health, Access to Support for Patients with Disabilities in Hospital Settings (5/11/20)

  • Massachusetts:  Office of Attorney General, Rights of Disabled Persons to Accommodations During COVID-19 Crisis (4/27/20) and Department of Public Health, Patient Visitors in Hospitals during the COVID19 Outbreak (6/9/20)

  • New Jersey:  Department of Health, Support Person(s) Permitted for Patient with a Disability (Updated 5/12/20)

  • New York:  Department of Health, COVID-19 Updated Guidance for Hospital Operators Regarding Visitation (4/10/20)

  • North Carolina:  Department of Health and Human Services, Title II Americans with Disabilities Act (ADA) and Section 504 Rehabilitation Act (RA) Protections during the COVID-19 Pandemic (6/5/20)

  • Ohio:  Departments of Health, Medicaid & Developmental Disabilities Services, Guidance: COVID-19 Standards of Care for Vulnerable Populations (5/6/20)

  • Oregon:  Oregon Health Authority, Revised COVID-19 Visitation Guidance for Acute Care Facilities (4/23/20)

  • Pennsylvania:  Department of  Health, Guidance on Hospitals’  Responses to COVID-19 (Updated 5/23/20)

  • Rhode Island:  Department of Health, Healthcare Facilities Visitation Policy (5/8/20)

For links to updates and to the above state policy documents, click here.

Also such policies are in place in Canada

as of 6/12/20

Update on Visitation Policy from the AADMD

On June 9, 2020, the effort begun by Dr. Seth Keller, bore fruit.  The AADMD released this statement: 

"We raised our voices and helped make a change! Thanks to advocacy efforts by the AADMD and beyond, hospitals and state agencies must now modify “no visitor” policies to accommodate patients with intellectual and developmental disabilities. On June 9th, the Center for Public Representation released a statement:

Today, in response to a complaint filed by CPR and partners challenging discriminatory hospital “no-visitor” policies, the Office for Civil Rights (OCR) at the U.S. Department of Health & Human Services announced a resolution making clear that federal law requires hospitals and the state agencies overseeing them to modify policies to ensure patients with disabilities can safely access the in-person supports needed to benefit from medical care during the COVID-19 pandemic. Read the OCR's full statement here.

In April, the AADMD released a policy statement addressing the potential detrimental outcomes of blanket “no visitor” policies for individuals with intellectual and developmental disabilities. We started a petition to gain public support for changing those policies. To date, that petition nears 47,000 signatures and is supported by 57 organizations. Over the past weeks, we’ve reported states and hospital systems amending their policies, considering them “small victories”.

We’re calling this one a huge victory - a federal response and clear statement that hospitals must ensure patients with disabilities have access to the caregivers and direct support professionals they need.

We encourage you to celebrate with us and consider this a step forward in addressing healthcare disparities for people with disabilities. While it can’t protect our vulnerable population from COVID-19, this resolution removes one obstacle to getting them the best possible treatment.

This resolution also sets a precedent. We hope that when the next global health crises or pandemic strikes - whenever that may be - it will be met with a more equitable healthcare approach for all."

Archival Matter

Hospital Visitation Rights

DUE TO THE COVID-19 PANDEMIC,

HOSPITALS ACROSS THE NATION

ARE PROHIBITING VISITORS…

     … while this policy is sound as an attempt to stop the spread of coronavirus, it presents hardships to a vulnerable population -- people with intellectual and developmental disabilities (such as autism, Down syndrome, cerebral palsy, fragile X syndrome, and other complex neurodevelopmental conditions associated with significant cognitive impairment).  

     Many such individuals have limited verbal communication skills, difficulties understanding consent, care plans, and treatment protocols, experience situational trauma with unfamiliar settings, have low stress thresholds, and become anxious when separated from known family members, friends, or staff. These limitations may add to care challenges when their agency's 'Direct Support Professional' (paid caregiver) or family member/caregiver is prohibited from “in-hospital” support. 

     'No Visitors' policies may also result in detrimental outcomes because vital bio-psycho-social information is not conveyed adequately to medical staff. Agency personnel and family caregivers who have this type of information can provide it stat when on-site in the patient’s room or floor. They also can provide needed emotional support during a difficult situation.  The NDSS has developed a useful guide for families facing this situation

     Join the NTG in recommending that states and hospitals, in accord with the Americans with Disabilities Act, provide reasonable accommodations in their visitor policies for persons who need support from known and acknowledged support persons (such as family, designated support personnel -- such as direct support professionals, or other designated caregivers).  Such accommodations would include permitting in-room presence and providing PPEs for  authorized designated visitors.  Check our 'honor roll' of states that have issued updated policies.

     National Task Group on Intellectual Disabilities and Dementia Practices. © 2020                           www.the-ntg.org                                                       Edited 8/12/20

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