requires that hospitals provide protective equipment to those accompanying the patient, “implements vital safeguards for individuals with special needs to ensure proper and safe care is being provided and received in a hospital setting.”

Roger Severino, who directs the Office for Civil Rights, said in an interview that Connecticut’s order should serve as a model for other states. “People should not be left to fend for themselves when they can be reasonably accommodated,” he said. “The safety of patients with disabilities shouldn’t be pitted as if it’s a zero-sum game against the safety of others. Both can be protected.”

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The numbers in Pennsylvania are compiled by the Office of Developmental Programs of the Pennsylvania Department of Human Services and count people who get state services while living in group homes, state institutions or in their own homes. As of June 2, there were 801 confirmed cases and 113 deaths among people with intellectual disabilities and autism. In New York, NPR calculated data obtained from the New York State Office for People with Developmental Disabilities. Of people who get state services from that office, 2,289 have tested positive for COVID-19 and 368 have died.

The high rate of death "is disturbing, but it's not surprising," says Scott Landes, an associate professor of sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs.

He's been collecting his own data from state and private research groups and says people with developmental disabilities who live in group homes have some of the highest death rates from COVID-19 in the country.

"They're more likely — four times more likely, we're showing — to actually contract COVID-19 than the general population," he says. "And then if they do contract COVID-19, what we're seeing is they're about two times more likely to die from it."

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While HHS has already distributed billions of dollars from the fund, little has gone toward providers funded primarily by Medicaid.

That has drawn the ire of disability advocates and lawmakers alike. Just last week, a bipartisan group of congressional leaders wrote to HHS Secretary Alex Azar to inquire about the holdup.

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“Every day, I worry that Grace is going to catch the virus, or one of the people who takes care of her is going to catch it and bring it into the home,” Kuerzdoerfer said. “And I can’t visit her right now. It scares the living hell out of me.”

Across the state, 38,000 women and men live in 7,250 group homes monitored by the OPWDD. At least 4,000 of these individuals are in Western New York.

The state agency said it could not provide a breakdown of infections or deaths based on individual homes, counties or regions where they occurred.

Covid-19 has made life more complicated – and dangerous – for the residents and the workers who care for them. Many group home residents are especially susceptible to Covid-19 because they suffer from respiratory illnesses, diabetes or other underlying medical conditions.

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Families such as the Woodys depend on NOW and COMP Waiver Programs for employment support and residential services, specialized medical equipment and supplies, vehicle adaptation and other support services.

The Department of Behavioral Health and Developmental Disabilities has recommended cutting 100 new waivers for fiscal year 2021 as part of its 11 percent spending reduction required for all state agencies.

Phil Woody said the cuts to the waiver program could have a rippling effect.

"The impact of dropping the family support services' safety net for those waiting for waivers has the potential to increase physical, emotional and financial abuse, homelessness, sex trafficking, abandonment and the loss of jobs for family caregivers who can't afford outside help," he said.

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She said Gov. Kim Reynolds supports her plan to keep the Glenwood and Woodward institutions open while shifting their emphases and paring the number of people living in them.

Current residents of the facilities will not be forced to move out, Garcia said. Some of the residents have lived there for decades and are now elderly. She understands why they and their families would be leery of a move now.

“We have to work with individuals, their guardians, their family members and their planning teams, all of whom know our residents best,” she said.

The state has been reducing the number of residents at the institutions for years, from 496 in 2010 to 322 now.

Garcia said her department intends to encourage more residents to transfer to community placements and plans to admit fewer new residents. About a dozen current residents of the institutions already have indicated they would prefer to live in communities, she said.

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Despite high U.S. unemployment, there are already signs of stress for staffing, with workers demoralized by low pay, and what many see as a lack of professional recognition, said Joseph Macbeth, president of the National Alliance for Direct Support Professionals Inc., a trade organization. Residential homes have struggled with staffing amid infections, and those employees who stay are working long hours, homeowners say, sometimes six days a week.

At the care home where she works in Warren, N.J., Deidra Fransaw helps wash, dress and feed the residents. She also administers medicine and oversees activities.

She talked of her fondness for the residents, in particular one man with Down syndrome. She would often put music on and dance with him. At night, they watched the news together.

Because of social distancing, the two can no longer dance. The home also no longer allows residents to watch the news, as the evening reports were confusing and depressing for some residents. Ms. Fransaw’s occasional dance partner, like all other residents, must now remain in his room.

“He just doesn’t understand,” she said.

On April 15, Ms. Fransaw arrived at work to be told that a colleague had died of coronavirus. She left that day and didn’t return for three weeks.

“I was on the verge of breakdown. I was crying all the time. I could not sleep,” she said.

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