(TNS) — Katie Rosenberg is essentially trapped in her Fabius home until she can get the Covid-19 vaccine.
The 31-year-old, who lives with her parents, was born with a cyst on her brain. She is developmentally disabled, has a seizure disorder and trouble swallowing.
Intellectually, Katie “is stuck between 18 months and 5 years,” says her mother, Jennifer Rosenberg. Katie does not understand why it’s important to wear a mask or practice social distancing. For all those reasons, she is at high risk of getting Covid-19 and suffering severe complications from the virus.
But she and about 80,000 other developmentally disabled New Yorkers — including nearly 5,000 in Central New York — who live in the community are not eligible yet to get the vaccine unless they are at least 65. Development disabilities include Down syndrome, autism and other disorders. Disability advocacy groups want the state to prioritize this population, the same way it has prioritized people with developmental disabilities who live in group homes and other congregate residential facilities.
Their pleas come at a time when the state’s vaccination program is fraught with confusion and dysfunction. The state expanded eligibility last week to about 7 million people, even though it’s getting less than 300,000 doses of the vaccine a week.
ARC of New York is encouraging families of people with disabilities living in the community to send emails to their state and federal elected officials, asking that their loved ones get priority for the vaccine.
Eric Geizer, CEO of Arc of New York, acknowledged the state is in a “tough spot” because it does not have enough vaccine for people over 65 and some others who have already been deemed eligible for the shots. “But our population has inherent risk factors the general population may not have,” he said. “We have an obligation as a society and state to make sure they are protected from harm.”
Jack Sterne, a spokesman for Gov. Andrew Cuomo, said while the state is sensitive to the disability group’s concerns, “... we are constrained until the federal government steps up and provides more doses.”
The state announced last week it was adding people with weakened immune systems to the eligibility list. People who are immunocompromised, however, have not been able to make appointments for the vaccine because the state is waiting for the federal Centers for Disease Control and Prevention to clearly define who qualifies under the immunocompromised category.
State Sen. John Mannion, D-Geddes, chair of the Senate’s Disability Committee, has also asked Cuomo to make all developmentally disabled individuals eligible for the vaccine.
“Historically, people with developmental and intellectual disabilities have not received equitable medical treatment when resources are scarce,” Mannion said in a letter to the governor.
Katie Rosenberg attended a day habilitation program in Liverpool run by ARC of Onondaga until the pandemic hit in March. Her parents are anxious for Katie to go back, but won’t let her until she is vaccinated.
Jennifer Rosenberg is upset Katie and her peers are not considered a high priority for the vaccine. “They have been forgotten,” she says.
Nick Cappoletti, CEO of LIFEPlan CCO NY, a Utica agency that coordinates care for Central New Yorkers with developmental disabilities, said he’s hearing from many parents upset about the lack of vaccine for their children. Until the vaccine is available, many families are keeping their children home, he said.
“They can’t work, they can’t volunteer and they can’t move on with their lives,” he said.
People with intellectual and development disabilities are three times more likely to die of Covid-19 than patients without those disabilities, according to a recent analysis of insurance claims by FAIR Health, a nonprofit that operates a database of private insurance claims. Recent studies by researchers at Syracuse University and Upstate Medical University have also concluded Covid-19 poses a much greater risk to this population.
Many people with developmental disabilities have underlying medical conditions that make them vulnerable to the virus, according to Dr. Margaret Turk, an Upstate Medical rehabilitation specialist and disabilities researcher. She said those underlying conditions include cardiovascular disease, lung disease, type 2 diabetes, kidney disease and cancer.
Many people in this population are unemployed, live in poverty and don’t have good access to health care, according to Turk. She said society tends to overlook their problems “This is a vulnerable population and an invisible population,” she said.
Turk co-wrote a paper released last month with SU professor Scott Landes and other researchers that says limiting vaccine prioritization to developmentally disabled people who live in group homes is short-sighted.
“Caring for those with the greatest need is a moral responsibility,” the paper says. “Whether, and how, we prioritize people with intellectual and developmental disabilities in Covid-19 vaccine allocation will reveal the extent to which we value this group within our society.”
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