coronavirus long island

Reopen News: Special needs community being left out of NY reopening, protesters say

Thursday, June 25, 2020

Desperate NY parents demand new guidance for group home visits

Kristin Thorne reports from a rally where families of special needs patients are speaking out about being cut off from their loved ones.

HAUPPAUGE, Long Island (WABC) -- Dozens of people rallied on Long Island Thursday, protesting that people with developmental disabilities in group homes are being left out of the reopening phases in the state's response to COVID-19.

The demonstration was held outside the Office for People with Developmental Disabilities in Hauppauge, with those in attendance expressing concerns and disappointment over what they call a lack of prioritization and plans for this population.

"They have been locked up in their group homes for more than 100 days," said Russell Snaith, founder of the New York Alliance for Developmental Disabilities. "Which is very frustrating and causing a lot of anxiety and depression for some of these individuals who think that they're never going to get out and see their home again."

The special needs community deserve the same rights as everyone else, they said, claiming the state is leaving them behind in New York's Unpausing.

"For them not to come home, they don't understand it," said Kim Carbone, of Westbury. "They don't understand why. Why can't I come home?"

Carbone and her husband, Augie Carbone, have three sons in group homes. They saw Luke and Anthony Wednesday for the first time in three months.

"I have not seen Mike," Augie Carbone said. "Mike is blind and non-verbal. I cannot bring myself to go to his house for a visit because he won't understand. He'll want to just come home with me. So that would be torturous for him."

Families say it essential to provide phased plans to include family home visits, community outings, and the resumption of adult day habilitation programs.

Jim Mulvaney, the founder of Surf for All, a group which teaches people with developmental disabilities how to surf, has barely seen his 32-year-old son with autism throughout the past three months. He was able to see him on Father's Day.

"He gave me a Father's Day card, it broke my heart," he said. "It was a picture of a bear and the words on it said, 'To a dad who can fix everything.' I can't fix this. It's breaking my heart."

Mulvaney's wife, Barbara Fischkin, said she primarily communicates with her son through Skype.

"I cry every night," she said. "I cry all day. I look at pictures of him. I get off the Skype and I cry."

Fischkin said the last time she saw her son, he asked when he would be "set free."

"What should I say to him?" she asked. "Call Dr. Kastner, the OPWDD commissioner?"

The Office for People with Developmental Disabilities provides guidance and oversees service providers across New York who depend on them for direction and plans for the COVID response.

Visitation guidance was issued on June 18 -- more than three months after the initial lockdown to control the coronavirus went into effect -- that families say was unacceptable with extremely limited and restrictive family visits.

They argued that every region in the state is at least in Phase 2 of reopening, with businesses reopening and people allowed to resume semi-normal lives, except the disabled.

The new guidelines do not allowed residents with special needs to leave the property, remaining in the line of sight of an employee.

They say their developmentally disabled loved ones do not understand why they can't hug, why they can't go home with their family, why they can't go back to their day habibilitation programs, why life suddenly got ripped from them, and why they are not part of any reopening phase -- which they say is cruel and causing mental harm.

Angela Cerina, of Dix Hills, said she's only allowed to see her son once per week.

"This is my son," she said. "How dare that someone put restrictions when I can see him and when I can't."

All of the protesters Thursday said they appreciate the hard work being performed by the workers in the group homes and said their anger and frustration is in no way directed at them.

"They're heroes," Fischkin said. "They're saints."

They say they can't afford to wait any longer for a guidance update, and they are demanding immediate action.

"Our family members are regressing and anxiety levels are so high self injurious behaviors have increased," event organizers said in a press release. "We need action before the mental and physical damage is irreparable. We as a state are better than this...We need a phased plan, and we need it now."

Jennifer O'Sullivan, Director of Communications for the New York State Office for People With Developmental Disabilities, issued the following statement:

"Families of people with developmental disabilities have resumed visits with their loved ones in group homes all across New York State as OPWDD continues to work with the NYS Department of Health on reopening steps that will safely include in-person services, home visits and community outings. As always, our number one priority as we take steps to return to a 'new normal' continues to be ensuring the health and safety of the people we support."