Vaccine 'a game changer' for the disabled, including those in group homes

May 13—The risk in New York State that someone with an intellectual and developmental disability will die from Covid-19 is 2.5 times higher than in the overall population.

Physical and mental challenges help explain this. So, too, do living arrangements and dependence on others also grappling with the coronavirus pandemic.

Despite falling virus case numbers, lockdowns and limited personal contact largely continue for most in the disabled community — though a growing number of those who have been vaccinated is making an impact.

"The vaccine was a game changer," said Thomas Ess, vice president for emergency management, safety and security with People Inc., and head of the Developmental Disabilities Alliance of Western New York Vaccine Task Force.

The alliance has worked throughout the pandemic with Person Centered Services, where the 700-member staff is largely made up of care coordinators who advocate for those with disabilities, helping them connect to agencies, programs, employment and services — including medical care — and monitor their progress and well-being.

"It's been nothing short of a challenge," said Bridget Bartolone, CEO of the nonprofit agency, which collaborates with more than 50 other agencies in 18 western and central New York counties.

Associated leaders in greater Buffalo have talked by phone and online regularly as a group since late last year about vaccine availability, logistics and education.

Roughly one in three of those who they serve live in group homes. The rest live with loved ones, or on their own, with help from services that gird their independence.

During the vaccine rollout, group home residents fell into the same category of need as essential workers. What happened at People Inc. symbolizes why: 188 of the 855 who live in its 147 residential settings tested positive with the virus, including 10 who died. Most got sick during the second regional Covid-19 peak during and after the winter holidays, Ess said.

Other individuals served by Patient Centered Services and the agencies it fosters began getting vaccinated in early February as part of the 1B-eligible group.

The Erie County Department of Health was among vaccinating agencies that made house calls for those homebound with intellectual and developmental disabilities, as well as created space that allowed for more privacy and assistance for those immunized at vaccination sites. A greater demand for that kind of attention will come after children with autism this week became among those aged 12 to 16 eligible for the Pfizer vaccine, Bartolone said.

Vaccine-related duties are the latest kindnesses shown by care coordinators since the start of the pandemic, even though they continue to be largely prohibited from seeing individuals they serve face to face. They have changed wheelchair batteries, supplied emergency cellphones and checked in online or by phone several times each week to make sure all had a lifeline. They dropped off food as needed — and collectively donated more than $2,000 to regional food banks.

"There were Herculean efforts," Bartolone said.

Day services for related agencies were only recently allowed by the state to reopen at 33% capacity. Related transportation services are rolling back to life and group home visitation has resumed, thanks to a vaccination rate among group home residents that approaches 90% and has cratered the number of their virus cases, Ess said.

There are exceptions. Roughly one-third of those served by Person Centered Services continue to say they will wait for vaccines, Bartolone said. Meanwhile during the pandemic, 20% of the 1,500 direct support staff at People Inc. have tested positive with the virus. None died, Ess said, but several were out sick for several weeks or more — and fewer than 40% of that staff, mostly younger and female, have so far been vaccinated.

Those choices have real-world consequences, Ess said. Since the pandemic began, virus testing for staff and all occupants has been conducted at some group homes more than 10 times, with quarantines imposed in most cases.

"Things that our residents were missing the last year have been birthdays, family events and Mother's Day," he said. "I had to put sites on quarantine last weekend, and people couldn't go visit their mom."

Bartolone said she hopes most vaccine reluctance will be overcome as vaccines continue to yield pandemic progress in homes, workplaces and the larger community.

"Most humans like routines," she said, "and it's been a real challenge for the families that have had all that disrupted. But we're trying to get back, which is why the vaccines have been so critically important. The access to vaccines and the work that care coordinators have done to link and refer people to vaccines is arguably the most important thing they could have ever done."

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