The last time my son had to stay in the hospital, he tried to pull the needles and tubes from his arms so he could “escape” from his bed. He was 20 at the time, old enough to not need a parent with him in the view of many hospitals. But he has an intellectual disability, is non-verbal, and communicates mostly through gestures that only his familiar people can understand. He has a communication board, but will only use it when he feels at ease. I had stepped away from his side for a moment to wash my hands, but got back to his bed in time to calm him down. If I wasn’t able to be there with him, he would be terrified, confused and unable to make his basic needs known. He’d also give the nurses and doctors a run for their money! Literally. A nurse would probably have to stay with him at all times so he would not run off.
This was before COVID-19, when it was not a problem for a parent or caregiver to be there in the hospital to support a person with a disability. But since the outbreak, hospitals have been adding “no visitation” policies to reduce chances of transmitting the virus. As a result, many patients – including adults with disabilities – have been alone in the hospital.
You may have heard heart-wrenching stories of people with disabilities who were not allowed to bring a support person with them. My friend’s father is elderly and is unable to speak because of a stroke. When he went into the hospital for some emergency tests, his wife was told she could not stay with him, even though her help was critical for him to be able to communicate with the medical staff.
Fortunately, many tireless disability advocates are fighting back and now it may be easier to get hospitals to agree to let a “companion” or support person stay and help!
New Civil Rights resolution affirms the right to a supporter in the hospital
On June 9, 2020 the Office for Civil Rights (OCR) resolved a complaint against the state of Connecticut about restrictive visitor policies. This led to a new state policy: patients with a wide range of disabilities can ask that a support person stay with them in a hospital when that support is needed to accommodate their disability. Note that this is how the OCR resolved this specific complaint in Connecticut. However, this ruling shows what OCR expects other states to do to ensure that disabled patients can fully access and participate in their care and treatment.
Americans with disabilities are protected by laws like the ADA (Americans with Disabilities Act) and Section 504 of the Rehabilitation Act. These laws say that all public services have to give equal access to people with disabilities, even if they need to make a change in their regular policies. These changes are called reasonable accommodations. This recent ruling confirms that having a person with you in a healthcare setting is a reasonable accommodation, so hospitals should allow it, even during the COVID-19 crisis.
This background is good to know. Use these terms if you need to convince the medical team to let you—or an aide– stay with your loved one.
Since this is an interpretation of two federal laws, this means that it should be allowed everywhere:
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All states!
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All hospitals!
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All kinds of disabilities!
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Doctor’s offices too!
The actual rules:
If someone needs a familiar support person with them in order to communicate, take care of personal needs, make decisions, or avoid anxiety that could interfere with care, the hospital must allow it.
Hospitals must:
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Allow a support person to stay with someone who has a disability
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Give the supporter a face mask and other needed protective equipment
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Allow a second person to switch off to give the supporter a break
What can you do?
If your family member needs to go to the hospital for any reason, here’s what you can do to make sure the hospital follows these rules:
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Explain that your family member has a disability and that they need to have someone with them in order to fully access care and comply with instructions.
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Explain why. Do they need help with communicating, making decisions, or self-care? Do they need you there to avoid anxiety that would interfere with their care?
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Say that having a supporter is a reasonable accommodation, which is required by the ADA (Americans with Disabilities Act) and Section 504 of the Rehabilitation Act.
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If they say it conflicts with their visitation policy, explain that you are not a visitor, but a “companion” or “supporter”. Your purpose there is to provide this accommodation, which is your family member’s right.
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If possible, bring paperwork with proof of the disability, and any health care proxy, supported decision-making agreement or guardianship status. Also bring any assistive communication devices.
If you have trouble, speak with the department manager and ask about the hospital policy. Remind them about this ruling by the Office for Civil Rights. Print out a copy of this announcement from The Center for Public Representation to show them.
More Resources
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Read more from the Center for Public Representation, including the Announcement of the Resolution.
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See these resources from The Autistic Self Advocacy Network and Green Mountain Self Advocates. They were created by people with disabilities:
Sources: The Center for Public Representation, The Arc and The U.S. Department of Health and Human Services.
