Most of them are children who cannot feed themselves, sustain eye contact or show convincingly that they know their own mothers’ faces. Sometimes they seem to know them, sometimes they don’t. In another age, most probably would not be alive.
There are thousands of kids like them, kids whose lives were spared thanks to the miracle of modern medicine – but with strings attached: feeding tubes, tracheostomies, brain damage, lives so fragile they will be in the hospital more often than not, or need 24-hour nursing care, for the duration.
To be the parent of such a child is a tough negotiation to which many parties are invited: Parental love, profound duty, the insurance gate-keeper, self-preservation, to name a few.
Making it still tougher is the either/or choice that has always faced people with such children in the New York metropolitan area: If the parents are unable for whatever reason to care for their child at home, they must send the child far away. For medically fragile children with severe disabilities, there are no long-term care facilities closer than a two- or three-hour drive.
Not one. Not yet.
When they finish building “Angela’s House,” a group home in East Moriches, there will be one. It will have room for seven kids. On Long Island, that leaves several hundred still waiting, according to unofficial estimates (there are no official estimates).
The ground-breaking ceremony for Angela’s House was held last week. Construction should be completed by summer. “…So, starting today, we work on building a house in Nassau,” said Robert Policastros, a Hauppauge father who, more than anyone else, was responsible for the state-supported construction of this group home on Montauk Highway.
It had taken him almost nine years to get this far, as the 50 assembled people at the ground-breaking last week knew, which was why they murmured and chuckled when Policastro started right in talking about his next project.
He has carried the torch since Oct. 8, 1990, when his infant daughter, Angela, who was born with severe brain damage, died on a Connecticut nursing home. After Angela’s birth, Policastro and his wife, Angie, had spent six months at her hospital bedside. When she came home, however, with another child to care for, and Angela’s 24-hour nursing needs, the couple decided they could not properly care for her and went looking for a facility they felt comfortable with. The closet was in New Britain, Conn.
They made the three-hour trip once a week. On the day before their regular visit, a nursing supervisor called and said Angela was not well. The Policastros left immediately in a rainstorm. Their car broke down on the way. When they arrived, their daughter was dead.
“We didn’t want this to happen to anyone else,” Policastro said, explaining a personal oain that propelled him through a thousand phone calls and a hundred meetings in efforts to get the state bureaucracy to recognize this gap in its health care system for disabled, sick children.
For the last two-year leg of the struggle, Policastro had the formidable help of Assemb. Harvey Weisenberg (D-Long Beach). Weisenberg is himself a father if a retarded 41-year-old man, Rick Weisenberg. As Weisenberg said in his remarks at the ground-breaking, he and his wife, Ellen, “have been changing diapers for more than 40 years,” and therefore understand “the community of need of developmentally disabled people.”
Weisenberg shepherded legislation that set aside about $500,000 in this year’s $66-billion state budget for Angela’s House. The seven children who will live there, attended by shifts of nurses, will receive state and federal assistance through Medicaid. The home will be administered by a non-profit organization called Independent Group Home Living Program, IGHL.
The residents will include Pedrom Palazzo, born seven years ago severely brain damaged; a boy who loves music and lets you know in unmistakable ways when he is happy or displeased, according to his East Meadow family. He lives now in a facility in upstate Millbrook.
Eight-year-old Robert Jackson is scheduled to move in. Hos grandmother, Diane Goins of Roosevelt, drives three hours every other week to visit him in Sullivan County. She says Robert can walk with a walker, though no one ever expected him to live past his first birthday due to severe brain and lung problems. He was born weighing just one pound.
Kelly O’Connell, 9 , “a happy child,” according to her grandmother, Marie Haack of Lindenhurst, has cerebral palsy, is blind, and wracked by seizures. But she loves music and can clap her hands. She lives now with her disabled father, Dan O’Connell, in Bohemia.
Six-year-old Johnny Boutin “likes to hear people talking, like the sound of trees,” according to his mother, Lorraine. He has severe cerebral palsy and medical problems that have kept him hospitalized for many months. When he is released, he will return home until Angela’s House is ready.
Unofficially, though the Policastros are certain of it, Angela will live at the house, too.
By Paul Vitello
Newsday (September 28, 1999)