Heartbreaking: S.I. dad and mom watch disabled kids regress throughout pandemic, with no vaccination in sight

STATEN ICELAND, NY – Parents of children with physical, mental and developmental disabilities (I / DD) say their children are still the forgotten population almost a year after the coronavirus pandemic (COVID-19) began.

Many schools and day programs for the I / DD community on Staten Island and across the state were closed through no fault of their own during the pandemic, forcing those in need of help, specific programming, therapy, and continuity to stay at home – many without services.

Suzette Violante said the toll was high on her family and on her 23-year-old daughter Brianna, who has cerebral palsy, is non-verbal and wheelchair-bound.

Brianna, she said, is cognitively there; It’s like she’s trapped in a body that isn’t working.

“There were no programs for children with cognitive skills. It has been almost a year since the pandemic started and we are still struggling to find programs and services for them, ”Violante, a woman living in Annadale, tearfully told Advance / SILive.com.

The experience was heartbreaking, she said after years of taking her child to a point and then watching for months as she regressed at home.

“We want to give her a reason and a purpose to wake up every day. That is the most difficult challenge. The main thing is to keep their spirits up because the moment they give up it is, ”she said.

Mayor Bill de Blasio and Governor Andrew Cuomo have repeatedly said that the COVID-19 vaccine is the path to “normalcy”. However, there is little medical research on whether the vaccine is safe for people with developmental disabilities, although they are more likely to die than those without disabilities.

A precarious situation

Maryann Virga’s son Matthew, now 23, was born 10 weeks premature and as a result has severe spastic paraplegic cerebral palsy and is non-verbal.

It has been an uphill battle for Virga, a West Brighton resident, since Matthew graduated from Hungerford School as an adult – many adult daytime programs are not prepared for his severe disability.

She eventually found a place on Lifestyles for the Disabled after working a lot on both ends, and then the pandemic hit.

Now Matthew sits in his wheelchair in front of a computer for four hours a day receiving Zoom lessons.

“It is a very precarious situation that we are in [coronavirus] Pandemic, ”said Virga.

‘I WAS LUCKY’

Noreen Boffa and her daughter Ariel Mulford, 17th Mulford, with cerebral palsy. (Courtesy photo by Noreen Boffa)

Annadale’s Noreen Boffa said she was “lucky” to find a school in Manhattan that could accommodate her daughter, 17-year-old Ariel Mulford, in July.

Ariel has cerebral palsy and intellectual disabilities. Prior to the pandemic, she received full-time physical, professional, language, and other therapies every day at Hungerford School.

When the pandemic broke out, Boffa was in charge of her daughter’s therapies, which she called a challenge.

“It took a while to get going again,” said Boffa of the new school. “I’ve only seen improvements, but it’s different,” she said.

Ariel is one of the lucky ones; There hasn’t been much, if any, regression, contrary to what so many other families have seen when their disabled children did not have access to the services they needed.

“This population needs the structure and the routine,” said Boffa.

While grateful for Ariel’s services, Boffa still feels forgotten amid the pandemic.

“In a certain aspect we feel forgotten; with tests and not knowing if the vaccine is working, how it affects the population, the educational aspect of everything, “she said.

Boffa plans to discuss the vaccine with Ariel’s pediatrician and neurologist during an appointment next month, although she knows there have been no studies and is unsure whether she will get Ariel vaccinated even if she is eligible.

VACCINES MAY NOT BE ACCESSIBLE TO MANY DISABLED PEOPLE

“We don’t know if the vaccine is safe for her, if it will interact with all the other drugs she’s taking, and because no one has bothered to acknowledge it [this population] We just don’t know, ”said Violante.

As with most problems related to her daughter, it is up to her to do research and to speak up for Brianna.

As with many other aspects of life in the I / DD community, understanding how vaccination is tolerated is a complex problem – there are a multitude of different skills and disabilities, as well as the drugs that are used to treat them.

Across New York, nearly 80,000 people live with developmental disabilities. Even if vaccination were clearly safe, this population – with the exception of those over 65 – is currently ineligible, although some are classified as high risk due to their complicated medical conditions in addition to their physical disabilities.

According to FAIR Health, people with I / DD are three times more likely to die from COVID-19 than those without a disability.

Currently, only those who have “weakened immune systems” can be vaccinated against COVID-19 in New York. However, the definition is vague.

Cuomo and de Blasio have both said they are waiting for further guidance from the federal government, the Centers for Disease Control (CDC), before adding those who are immunocompromised and disabled.

“We’re still doing everything we can to get as many New Yorkers vaccinated as soon as possible. Over 7 million New Yorkers are currently eligible for the vaccine, but our weekly federal government allotment of doses has been cut without explanation. We are encouraged by the new government’s announcement that we will receive a 16% higher allocation and we hope to continue receiving more doses and guidance on this matter, ”the Department of Health (DOH) told Advance / SILive.com, than asked specifically why it was not possible to add people with disabilities to the permission list.

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