After their daughter Angela was born severely brain damaged 11 years ago, Robert and Angie Policastro searched for a nursing facility near their home in Hauppauge that could care for her.
The closet nursing center with room for their daughter was in New Britain, Conn., a 2 1/2 hour drive from their home. Angie, 40, said their only placement option was in Albany, which was even farther away.
So the Policastros made the trip to New Britain at least once a week, returning to Long Island physically and emotionally drained. When Angela died on Oct. 8, 1990, at 14 months, they were unable to be by her bedside.
Robert, 40, has lobbied the state to build a home for severely disabled children on Long Island ever since.
And his efforts have finally succeeded.
Angela’s House was inaugurated on June 30 in East Moriches. It is the first group home for severely disabled children on Long Island and will accommodate seven children, who are to arrive in the next few weeks.
Like many parents with disabled children, Robert and Angie Policastro could not meet Angela’s complex needs at home. And they wanted something more than a hospital for their daughter. But Robert said he had a hard time convincing the state of the need for a nursing facility on Long Island.
“I realized as our daughter was in the hospital that there was no one in the state that realized that these kids were a population that needed to be dealt with,” he said.
He began writing and calling local state Assembly members, state senators and representatives to raise awareness of the needs of severely disabled children. He proposed to the Department of Health and the Office of Mental Retardation and Developmental Disabilities that the state build a group home, not a large nursing facility, on Long Island.
The Policastros found Assemb. Harvey Weisenberg (D-Long Beach), whose son, Rick Weisenberg, 42, is handicapped, very receptive to their proposal at a breakfast for the Long Island Council of Families with Disabilities in 1997.
“He totally understood right away,” Robert said. “And he basically committed at that point to have it in the next budget.”
Weisenberg said families should not have to place their children in nursing facilities outside the state.
“The theme of my efforts was to bring our children home,” he said. “We export our handicapped children out of state and this is an outrage.”
Weisenberg got $500,000 for the facility in the 1998 state budget, and construction began in September of 1999. He said he is also close to getting funding for another home for severely disabled children in Nassau County.
Angela’s House looks from the road like any suburban home, something the Policastros wanted. “When you are looking for a residence for your child, you are not looking for hospital-type settings,” Angie said. “This is where you are leaving your child. It’s an extremely emotional decision and it has to be a place like home.”
Inside, murals of dolphins, whales, and rabbits cover the bedroom walls, camouflaging the oxygen units that are connected to a tank in the basement.
A cookie jar on the dining table and barbecue grill in the backyard complete the picture of a typical suburban house.
“It’s quiet, it’s peaceful, the birds are chirping. These are all things that are important to me because I know my son enjoys them,” said Lorraine Boutin, whose son Johnny will reside at Angela’s House.
Johnny, 7, has celebral palsy and severe mental retardation. Boutin, 35, said she began looking for a nursing care facillity two years ago when he was placed on a feeding tube and a tracheal tube and required constant attention. “With three [other] children, I couldn’t do it,” she said.
The Islip Terrace resident said she had no other placement options because she wanted to be close to her son.
The Policastros help families find nursing facilities through an organization they started after Angela’s birth called Angela’s House. For Angela’s House, Robert said he selected families that had waited the longest for placement.
For now, seven children have a home. But Robert said his crusade is not over. He is going to continue pushing the state for a respite center, a place that families who care for their severely disabled children at home can turn for a break, even for one night. “There is a lot more need,” he said.
By Sudhin S. Thanawala
Newsday (July 16, 2000)