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COVID-19 may be deadlier for group-home residents

A young woman wearing a face mask looks out the window
Vulnerable at home: Group-home residents may not be able to practice social distancing, making it difficult to protect themselves from COVID-19.

iStock / damircudic

Intellectually or developmentally disabled New Yorkers living in group homes may be more likely to contract and die of COVID-19 than those in the general population, according to a new study of more than 20,000 group-home residents1.

The study captures only a subset of New York’s group-home residents and doesn’t account for demographic differences, such as race and age, that may be driving the disparity. Like many coronavirus studies, it also likely excludes many asymptomatic individuals and those who were never tested.

“It’s imperfect data,” says co-investigator Margaret Turk, professor of physical medicine and rehabilitation at SUNY Upstate Medical University in Syracuse, New York. “And yet it is important information because whether or not you like the numbers, it does tell a story.”

Previous research suggests that intellectually or developmentally disabled people may be more vulnerable to COVID-19. According to an analysis of National Center for Health Statistics data in April, adults with intellectual or developmental disabilities are more likely than those without to die from pneumonia, a frequent complication of COVID-19. Another survey found higher rates of comorbidities linked to more severe COVID-19 cases, including respiratory diseases, among intellectually or developmentally disabled people2. It also found that intellectually or developmentally disabled individuals younger than 75 with COVID-19 are more likely to die than their nondisabled peers with the virus.

“There’s obviously something going on here that’s very different from the general population and very disconcerting,” says Scott Landes, associate professor of sociology at Syracuse University and co-investigator of the two studies, published in May and June in Disability and Health Journal.

Many intellectually or developmentally disabled adults live in congregate settings such as group homes and residential facilities, which feature shared common spaces, rotating staff and little room to isolate infected residents.

“They may not be able to practice physical distancing, they may not have access to appropriate PPE [personal protective equipment], and they may have the need for personal assistance,” says Coleen Boyle, adjunct professor at the Center for Leadership on Disability at Georgia State University in Atlanta, who was not involved with the research. “That really makes them vulnerable.”

Capturing cases:

To gauge the toll of the virus on intellectually and developmentally disabled group-home residents, Turk, Landes and their colleagues studied COVID-19 diagnosis and death data from New York Disability Advocates, a group of service providers that run group homes for intellectually and developmentally disabled New Yorkers. The researchers compared the proportions of confirmed COVID-19 cases and deaths among residents of the participating homes — about half of all New York state group-home residents — with data on the general population from the New York State Department of Health.

They found a coronavirus case rate of 7,841 per 100,000 group-home residents — four times the rate for New York state overall. Of the group-home residents who tested positive for the virus, 15 percent died, compared with 8 percent of all New Yorkers with a confirmed COVID-19 diagnosis. The team found a mortality rate of 1,175 per 100,000 group-home residents, which dwarfs the state’s COVID-19 mortality rate of 151 deaths per 100,000 people.


These differences were more pronounced for group-home residents in and around New York City, where COVID-19 hit hardest.

But it’s difficult to determine whether the group-home residents’ increased coronavirus risk is due to their living situation or their disability, says Lisa Croen, senior research scientist at the Kaiser Permanente Division of Research in Oakland, California.

“These two populations are really apples and oranges, so it’s very hard to compare,” says Croen, who was not involved in the research.

Residents at risk:

The findings are not surprising to advocates, group-home residents and administrators.

Because they live with housemates and work with staff they haven’t chosen, group-home residents aren’t able to protect themselves from the coronavirus as well as people living in their own homes or apartments can, says Zoe Gross, Director of Operations at the Autistic Self Advocacy Network.

“We were told to self-isolate, not congregate in large groups,” she says. “A lot of the people in these group homes have been denied the opportunity to do any of those things.”

When COVID-19 swept through a Long Island, New York, group home for intellectually and developmentally disabled adults, there was only one option for resident Teresa Lowther: The 52-year-old self-isolated in her bedroom for two weeks. But that did not keep her from contracting the virus. For her, it meant a week of fever and splitting headaches; other housemates dealt with more severe complications, including breathing problems. Staff helped as much as they could from a distance, she says, bringing in meals and doing residents’ laundry.

“That was nice, but it was a real pain being stuck in your room,” Lowther says.

At AABR, a New York disability services provider that operates 23 group homes, about 70 of the 165 residents have tested positive for the virus, says executive director Libby Traynor. A page on the services provider’s website commemorates the residents and staff who have died from the virus. Some had lived at AABR homes since the 1970s.

“It’s an empty bed, literally. An empty place at the table,” says Traynor of the losses. “It’s really like losing a family member.”

Turk and Landes say they’re planning further analyses of the New York Disability Advocates data, including a look at how age, race, pre-existing conditions and living arrangements may have affected residents’ experiences with the virus. They’re also calling on the New York State Office for People With Developmental Disabilities to release COVID-19 case and death data for all the state’s group homes — information they say will be essential for planning for this fall and beyond.

“States, you’ve got to show your data,” Landes says. “We need to know what’s going on.”

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THIS NOTICE DESCRIBES HOW MEDICAL INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED AND HOW YOU CAN GET ACCESS TO THIS INFORMATION. PLEASE REVIEW IT CAREFULLY.

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(vi) Legal Proceedings: We may disclose protected health information in the course of any judicial or administrative proceeding, in response to an order of a court or administrative tribunal (to the extent such disclosure is expressly authorized), or in certain conditions in response to a subpoena, discovery request or other lawful process.

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(ix) Criminal Activity: Consistent with applicable federal and state laws, we may disclose your protected health information, if we believe that the use or disclosure is necessary to prevent or lessen a serious and imminent threat to the health or safety of a person or the public. We may also disclose protected health information if it is necessary for law enforcement authorities to identify or apprehend an individual.

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Others Involved in Your Health Care or Payment for our Care:

Unless you object, we may disclose to a member of your family, a relative, a close friend or any other person you identify, your protected health information that directly relates to that person's involvement in your health care. If you are unable to agree or object to such a disclosure, we may disclose such information as necessary if we determine that it is in your best interest based on our professional judgment. We may use or disclose protected health information to notify or assist in notifying a family member, personal representative or any other person that is responsible for your care of your location, general condition or death. Finally, we may use or disclose your protected health information to an authorized public or private entity to assist in disaster relief efforts and to coordinate uses and disclosures to family or other individuals involved in your health care.
6. Uses and Disclosures of Protected Health Information Based upon Your Written Authorization Other uses and disclosures of your protected health information will be made only with your written authorization, unless otherwise permitted or required by law as described below. You may revoke this authorization in writing at any time. If you revoke your authorization, we will no longer use or disclose your protected health information for the reasons covered by your written authorization. Please understand that we are unable to take back any disclosures already made with your authorization.
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Following is a statement of your rights with respect to your protected health information and a brief description of how you may exercise these rights
1. You have the right to inspect and copy your protected health information
This means you may inspect and obtain a copy of protected health information about you for so long as we maintain the protected health information. You may obtain your medical record that contains medical and billing records and any other records that we use for making decisions about you. As permitted by federal or state law, we may charge you a reasonable copy fee for a copy of your records.
2. You have the right to request a restriction of your protected health information
This means you may ask us not to use or disclose any part of your protected health information for the purposes of treatment, payment or health care operations. You may also request that any part of your protected health information not be disclosed to family members or friends who may be involved in your care or for notification purposes as described in this Notice of Privacy Practices. Your request must state the specific restriction requested and to whom you want the restriction to apply.

We are not required to agree to a restriction that you may request. If we agree to the requested restriction, we may not use or disclose your protected health information in violation of that restriction unless it is needed to provide emergency treatment. With this in mind, please discuss any restriction you wish to request with your health provider.

You may request a restriction by making your request in writing to our Privacy Officer. In your request, you must tell us (1) what information you want to limit; (2) whether you want to limit our use, disclosure, or both; and (3) to whom you want the limits to apply, for example, disclosures to your spouse.
3. You have the right to request to receive confidential communications from us by alternative means or at an alternative location
We will accommodate reasonable requests. We may also condition this accommodation by asking you for information as to how payment will be handled or specification of an alternative address or other method of contact. We will not request an explanation from you as to the basis for the request. Please make this request in writing to our Privacy Officer.
4. Your may have right to amend your protected health information
This means you may request an amendment of protected health information about you in a designated record set for so long as we maintain this information. In certain cases, we may deny your request for an amendment. If we deny your request for amendment, you have the right to file a statement of disagreement with us and we may prepare a rebuttal to your statement and will provide you with a copy of any such rebuttal. Please contact our Privacy Officer if you have questions about amending your medical record.
5. You have the right to receive an accounting of certain disclosures we have made, if any, of your protected health information This right applies to disclosures for purposes other than treatment, payment or health care operations as described in this Notice of Privacy Practices. It excludes disclosures we may have made to you if you authorized us to make the disclosure, to family members or friends involved in your care, or for notification purposes, for national security or intelligence, to law enforcement (as provided in the privacy rule) or correctional facilities, as part of a limited data set disclosure. The right to receive this information is subject to certain exceptions, restrictions and limitations.
6. You have the right to obtain a paper copy of this notice from us
upon request, even if you have agreed to accept this notice electronically.
D. COMPLAINTS
You may complain to us or to the Secretary of Health and Human Services if you believe your privacy rights have been violated by us. You may file a complaint with us by notifying our Privacy Officer of your complaint. We will not retaliate against you for filing a complaint

You may contact our Privacy Officer at (704) 824-7800 for further information about the complaint process.

This notice was published and becomes effective on August l, 2011.