Heartbreaking: S.I. parents watch disabled children regress during pandemic, with no vaccination in sight – SILive.com

STATEN ISLAND, N.Y. -- Parents of children with physical, intellectual and developmental (I/DD) disabilities say their children are still the forgotten population nearly one year since the coronavirus (COVID-19) pandemic began.

Through no fault of their own, many schools and day programs for the I/DD community on Staten Island and throughout the state shuttered during the pandemic, forcing those who rely on the assistance, specific programming, therapies and continuity to stay home many without services.

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

Brianna, she said, is cognitively there; its like shes trapped in a body that doesnt work.

There have been no programs for kids with cognitive abilities. Its been almost a year now since the pandemic started and were still struggling trying to find programs and services for her, Violante, an Annadale resident, told the Advance/SILive.com through tears.

The experience has been heartbreaking, she said, after spending years to get her child to a certain point only to then watch her regress at home for months.

We want to give her a reason and a purpose to wake up every day; thats the hardest challenge. The main thing is to keep her spirit up because the moment they give up, thats it, she said.

Mayor Bill de Blasio and Gov. Andrew Cuomo have repeatedly said the COVID-19 vaccine is the way to return to normal, however, there is little medical research on whether the vaccine is safe for those with developmental disabilities even though they are more likely to die than those without disabilities.

A PRECARIOUS SITUATION

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

It has been an uphill battle for Virga, a West Brighton resident, since Matthew graduated from the Hungerford School when he became an adult -- many adult day programs arent equipped to handle his severe disability.

She finally found him a place at Lifestyles for the Disabled after much work on both ends and then the pandemic happened.

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

Its a very precarious situation were in thats only been complicated by the [coronavirus] pandemic, Virga said.

I GOT LUCKY

Noreen Boffa and her daughter Ariel Mulford, 17. Mulford, who has cerebral palsy. (Photo courtesy of Noreen Boffa)

Noreen Boffa of Annadale said she got lucky when she found a school in Manhattan that could take her daughter, 17-year-old Ariel Mulford, in July.

Ariel has cerebral palsy and intellectual disabilities. Before the pandemic, she received physical, occupational, speech, and other therapies daily at the Hungerford School full-time.

When the pandemic hit, Boffa was responsible for her daughters therapies, which she said was a challenge.

It took a bit to get back in the swing of things, Boffa said of the new school. Ive only seen improvements but its different, she said.

Ariel is one of the lucky ones; there hasnt been much, if any, regression, a contrast to what so many other families have seen when their disabled children dont have access to needed services.

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

While she feels thankful for Ariels services, Boffa still feels forgotten amidst the pandemic.

In a certain aspect we feel forgotten; with testing and not knowing if the vaccine will work, how it will impact the population, the educational aspect of it all, she said.

Boffa plans to discuss the vaccine with Ariels pediatrician and neurologist during an appointment next month, even though she knows there havent been studies and is unsure if she will get Ariel vaccinated even if she is eligible.

VACCINES MAY NOT BE ACCESSIBLE FOR MANY WITH DISABILITIES

We dont know if the vaccine is safe for her, if it will interact with all of the other medications that shes taking and because nobody has even bothered to acknowledge [this population] we just dont know, Violante said.

As with most issues surrounding her daughter, its up to her to research and fiercely advocate for Brianna.

Like many other aspects of life in the I/DD community, understanding how vaccination will be tolerated is a complex issue there are a multitude of different abilities and disabilities and medications that are used to treat them.

There are nearly 80,000 developmentally disabled residents across New York state. Even if vaccination were clearly safe, this population currently isnt eligible -- except for those 65 or older -- even though some are considered high-risk because of complicating 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 patients without disabilities.

Currently, only those who have weakened immune systems are eligible for COVID-19 vaccination in New York, however, the definition is vague.

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

We continue to do everything possible to get as many New Yorkers vaccinated as quickly as possible. Currently over 7 million New Yorkers are eligible for the vaccine, but our weekly allocation of doses from the federal government was cut without any explanation. We are encouraged by the new administrations announcement that we will get a 16% greater allocation, and we hope to continue to receive more doses and guidance on this issue, the state Department of Health (DOH) told the Advance/SILive.com when asked specifically why it couldnt add those with disabilities to the eligibility list.

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Heartbreaking: S.I. parents watch disabled children regress during pandemic, with no vaccination in sight - SILive.com