When Angela Frances Policastro was born with severe brain damage in 1989, her parents, Bob and Angie, soon realized that their daughter’s complex medical needs went beyond what they could administer at home.
But after failing to find a Long Island nursing facility capable of caring for their newborn, the Hauppauge couple was forced to place their daughter in a special care hospital in New Britain, Conn. At the same time, the Policastros launched a furious campaign to establish a local health care facility specifically designed for children who are dependent on medical technology for survival.
“I began canvassing every government official I could find,” Bob Policastro said. “I got a lot of lip service over the years, but little action.”
With Angela so far away, the Policastros anguished over not being able to see their daughter as much as they wanted. They even considered moving to Connecticut. Sadly, that turmoil would soon end in the worst possible way.
By the fall of 1990, just 18 months after her birth, Angela’s health had deteriorated. An urgent phone call from the nursing home sent the Policastros rushing to Connecticut. In spite of their efforts to reach their daughter, Angela died before the couple could reach the facility.
Devastated and heartbroken, the grieving parents found that their sorrow had created a new resolve to finish the work they had started. Though it took more than a decade to complete their quest, the Policastros were there when Angela’s House, a facility that assists severely disabled children, opened its doors in East Moriches two years ago.
“When I began to think about other people who were going through the same thing we did, I became more determined than ever to create a local home-like nursing facility for children on Long Island,” Bob Policastro said. “So that families would not have to deal with the pain of separation that we did.”
By 1992, the couple established Angela’s House, which was primarily dedicated to promoting care options for medically fragile children, Still determined to create a nursing home for children, Bob stumbled onto Independent Group Home Living (IGHL) in East Moriches. The organization would be instrumental in designing the practical workings for the couple’s dream.
“The Policastros had great vision that was well worth pursuing, but they didn’t have the established track record that they needed to get the government’s interest,” said IGHL Executive Director Walter Stockton. “Fortunately, our company did have that track record…all we had to do was find someone with the money.”
It took some time, but the team soon caught the sympathetic ear of Assemblyman Harvey Weisenberg (D-Long Beach).
“I absolutely appreciated their desire to create somewhere that these children and their families can easily be together,” said Weisenberg, who has a disabled 40-year-old son. “After , these children have the same basic needs that every other child has–to be loved, acknowledged and respected.”
The assemblyman helped secure $500,000 in annual state funding to build and finance the home in 1999. Angela’s House opened the following year.
The 4,500-square-foot care facility, which is designed to look like other Colonial home on Montauk Highway, sits on a manicured two-acre lot in East Moriches. Warm oak floors and cushy sofas invite visitors to relax and stay a while. The smell of home cooking emanates from a clean and modern kitchen, while a television blissfully prattles away in a cozy corner of a cheery sky-lit den.
Perhaps the most prevalent feature about the house is an atmosphere that leaves little doubt that it is a place where children live. Brilliant and colorful hand-painted wall murals and hoards of stuffed animals adorn the spacious five-bedroom house.
“We try to create an atmosphere that was not only comfortable for the children in our care, but also for visiting family members, especially other siblings,” said Heidi Benjamin, of East Patchogue, who serves as head nurse manager. “We want Angela’s House to be as much like a home as possible for everyone. The more comfortable other family members feel here, the longer they will stay and the more often they will visit.”
Seven children, ranging from six to 12 years in age, now reside in the home. Though unable to speak, the children each possess unique communication skills, according to those who care for them. “They each have their own little personalities and ways of getting their points across,” Benjamin said.
“There is a definite camaraderie between them,” added Bob Policastro. “It’s a remarkable thing to experience once you realize that they are communicating with each other.”
Most of the children are wheelchair bound and require special medical assistance to survive. Monitors, respirators and emergency apparatus are placed throughout the house. Yet even the most ominous piece of equipment finds itself tempered by the homey surroundings.
Johnny Boutin is one of the home’s most miraculous residents. Despite being born with scoliosis and congestive heart failure, the cherub-faced 9-year-old is always eager to smile and is responsive to the tender affection of his caretakers.
Lovingly nicknamed “Buddha-man” for his peaceful and stout personae, Johnny has spent the majority of his life confined to a hospital bed. Even though he has recently fitted with a tracheotomy tube, Johnny now attends school on a regular basis and can attend a variety of outdoor activities, such as a recent pumpkin-picking excursion.
Johnny’s mother, Lorraine Boutin of Islip Terrace, was overjoyed when she was able to place her son in the care of the new facility. “I had looked at so many other placed, the choices were horrendous,” she said. “I can’t express the feeling of knowing my son is being cared for and loved by people who are experienced and truly seem to be concerned about him and the work they are doing. Most of all, he’s close enough that I can easily be with him as much as I want…I just couldn’t be happier.”
As noted by the Policastros, demand is growing for such a facility as more than 40 children are now on a waiting list to be placed in Angela’s House. Plans are now underway to build a second home in Smithtown. Until then, local parents must continue to send their ill children to large or distant nursing care facilities.
“We’ve proven the financial and emotional effectiveness of this type of nursing care facility,” Bob Policastro said. “We are a living example that it works, and from what we are seeing, people are starting to pay attention to that. Unfortunately it’s probably going to be some time before we get to a point where no family will have to go through what we did.”