Facilities unclear on vaccine priority
Developmentally disabled left guessing
Allen Lesser missed out on the trip he’s taken to Florida every January for decades.
Elise Kellman had to cut back on her work hours at Walgreens.
Her best friend, Christine Buda, has to take her beloved art classes online instead of in person, and she hasn’t been able to see her 87-year-old dad in nearly a year.
All three miss being able to go out in the Manhattan neighborhood where they live together in a group home called Schafler House.
“They are bored and want their life back,” said Roseanne Giannotta, residential coordinator for Schafler and another program for medically fragile people with intellectual disabilities in New York City, both run by YAI, a service organization for people with these disabilities.
The death rate in group homes last spring was 30% higher than the city’s overall, and the infection rate is as high as it was then, said Hope Levy, executive director of Premier HealthCare, a
YAI affiliate.
Lesser, Kellman and Buda, all of whom survived the virus in the spring, volunteered and were among the first people with intellectual and developmental disabilities nationwide to receive the COVID-19 vaccine. New York prioritizes people with disabilities who live in group homes, even if they don’t need full-time nursing care.
Across the country, the priority level for people who live in group homes varies by state – even though the outbreak this spring showed that they are two to three times more likely to be exposed to and die from COVID-19 than the general population.
“Those of us who live in congregate settings, or who need in-person services and are unable to distance from staff, are at particularly high risk,” said Sam Crane, legal director of the Autis
“This means states aren’t given great guidance on whether to include DD facilities in prioritization plans, and we’re seeing a lot of vague plans and/or variation from state to state.” Sam Crane Legal director of the Autistic Self Advocacy Network
tic Self Advocacy Network, which represents people on the autism spectrum.
Some people with intellectual and developmental disabilities need help eating and bathing, so they can’t keep physically distant. Many are unable to tolerate masks. They often have medical conditions that make them more vulnerable to serious infections with COVID-19.
“All these risk factors make it particularly critical that people with I/DD be prioritized for vaccination,” Crane said via email.
The Centers for Disease Control and Prevention committee that sets vaccination priorities recommended people in “long-term care facilities” be among the first group to receive shots.
It doesn’t precisely define those facilities or specify group homes, such as those for intellectual and developmental disabilities, Crane said. “This means states aren’t given great guidance on whether to include DD facilities in prioritization plans, and we’re seeing a lot of vague plans and/or variation from state to state.”
Crane and others want the CDC to clarify that residents of group homes and their caregivers should be prioritized, along with people who receive in-person, at-home services.
The lack of specificity in the federal guidance language has left many in the community wondering if they are at higher risk from COVID-19, Crane said. There is little national data about this group. More than 7 million Americans – roughly 2% of the population – have intellectual or developmental disabilities, and about 10% of those live in a supervised residential setting, commonly called a group home. Most of the rest live with family members, many of whom are aging parents at particularly high risk of contracting COVID-19.
People with intellectual and developmental disabilities who are Black, Hispanic, Asian or Native American are more likely to have caught COVID-19 than their white, non-Hispanic counterparts, according to a study from the University of Texas-El Paso.
Even New York City and New York state have had different priorities for vaccinating people with intellectual and developmental disabilities, Levy said.
Levy lobbied for months to ensure the population she serves would be among the first to receive the vaccine.
“I think we’re the exception to the rule,” she said. Levy said she expects to be able to offer vaccines by the end of March to all 480 group home residents, all 12,000 Premier clients and the staff who work with them. With current employees, she can vaccinate about 100 people per day, she said, but she hopes to increase that number by bringing on additional short-term staff.
The vaccination process is slow in part, she said, because some clients can’t sign their own consent forms, requiring staff to reach out to guardians and family members. Also, some employees are reluctant to get vaccinated so soon after the FDA authorized the vaccine’s use.
Although the infection rate is as high as it was in March, Levy said more of her population appears to be getting asymptomatic cases.
Life remains complicated in group homes, according to Patty McGoldrick, a nurse practitioner who cares for patients with developmental disabilities as co-head of neurology services for Premier.
Occupational and physical therapy has been canceled or moved online. Supported social interactions, which are so important for this group, have been curtailed.
It remains challenging for her patients who can’t manage to wear a mask to go outside, even for a walk, McGoldrick said, because they get harassed by people who don’t understand their condition.
The situation is “hard on us,” she said. “It’s doubly hard on them.”
That’s why Lesser, Kellman and Buda were quick to volunteer for the vaccine, Giannotta said.
“When we asked, ‘How do you feel about the vaccine? Do you want to be among the first?’, they all said yes,” Giannotta said. “They did not hesitate because they want this to be over.”