Pedrom Palazzo is a 5-year-old boy who has spent more time in hospitals than he has at home. Though he cannot hold a toy, or speak, or see, he recognizes the voices of his parents when they visit him at the Cardinal Hayes Home for Children in upstate Milbrook, two hours from his East Meadow home.
He has been there for three years.
Pedrom smiles when people say his name, laughs when they tickle his chin or neck. His parents, Alan and Sohelia Palazzo, have tried to visit every weekend, though with two other children, it is sometimes hard. His parents miss him.
Pedrom is a physically beautiful child; his father sayd Pedrom “could be a model.” Except when his eyes rolled up in his head, there is no sign that he was born brain-damaged.
“Sometimes I wish he was ugly,” says the father. “It hurts a little more, him being so beautiful.”
Long Island is home to dozens and maybe hundreds of children like Pedrom, who are mentally impaired, physically disabled, medically fragile, beautiful to their parents, and far from home because there is no long-term care facility for them in Nassau or Suffolk counties.
Some of them live “temporarily” – for months – in the pediatric intensive care units of local hospitals, literally caged in cribs that enclose them completely to prevent falls.
Some end up at home if their health stabilizers, and if their parents can afford to hire – or have the insurance to cover the cost of – private duty nurses.
But if a child needs to be in a hospital indefinitely – as Pedrom does because of respiratory and other medical problems; as 5-year-old Jessica Guzman of Holbrook does because of complications from the meningitis that ravaged her brain when she was 1-month of age – their parents can find no place for them closer than New Jersey, Connecticut, or upstate New York.
It is a gap in the local health care system that affects a small segment of people who, to put it mildly, already have suffered as tough a blow as the gods mete out.
They are children who are born with severe impairments, or who suffer them as a result of illnesses or accidents after birth. Each of these children is as unique as any member of any other segment of the population, but many share certain brutal realities: they are mentally or physically unable to care for themselves, and always will be.
Closing the gap is not a cause to which people come easily. Most who even know about it are already faced with the unrelenting job of day-to-day coping. This month, Pedrom Palazzo was hospitalized with an unexplained fever of 107 degrees. He was sent by ambulance from Milbrook to North Shore University Hospital, where his parents were by his side for two weeks.
Martin and Maria Guzman are planning to meet with their daughter’s doctors soon to discuss the colon surgery she will need next month. They will spend the weekend with her in Albany, where she lives at St. Margaret’s Hospital.
The need for a children’s skilled nursing home on Long Island never had a champion until 1-year-old Angela Policastro died 150 miles from home on October 8, 1990, and her father, Bob Policastro, made a promise in her memory: to open a home for children like her on Long Island. Angela’s story is his lobbying fact-sheet. He has used it in thousands of letters, hundreds of meetings over the last seven years. She was born severely brain damaged. She spent the first six months of her life in the pediatric intensive care unit of North Shore University Hospital. When it came time to leave, Angela’s parents. Bob and Angie, found no place closer than New Britain, Conn., with the kind of nursing Angela needed.
The Policastros visited her there once a week for seven months. On a day before they were to make their usual visit, an administrator called to tell them Angela had developed a severe case of pneumonia. Bob rushed home from work, but before he and Angie had left the house, the administrator called again to say that Angela had died.
On the way to New Britain, a two-hour drive, the car broke down.
His campaign has won the respect of professionals, bureaucrats and legislative staffers in Albany and Washington, but so far no results. In 1994, administrators of the Long Island office of the state Office of Mental Retardation and Developmental Disability. OMRDD, approved a home with six beds to be opened near University Medical Center at Stony Brook.
But when a new governor took office in January, 1995, the plan was scuttled under orders to stop all new programs in every department of the government.
For people with children who are severely disabled, parenting is in some ways more elemental. Just “being there” with a child who cannot talk or see has a purpose and meaning deeper than “being there” otherwise does. It may be all the parent and child can do together.
Policastro has continued lobbying politicians and organizing parents of disabled kids for meeting and counseling. At a breakfast for Long Island legislators last October, Assemb. Harvey Weisenberg (D-Long Beach) was moved to adopt Policastro’s cause. He is the first lawmaker to do so in the seven years.
“It’s a real gap in the health care system,” says Weisenberg. “You can’t help but feel for these people. All thet ask is a chance to hug their child everyday, not to have to pack up and go to Connecticut or New Hampshire or wherever.”
Weisenberg did not come easily to the cause, either. His 38-year-old son, Rick, lives in a group home for retarded adults on Long Island.
Since joining Policastro’s campaign, Weisenberg has called in favors, cornered Gov. George Pataki and Senate Majority Leader Joseph Bruno at official events, buttered up the chairman of the Assembly and Senate committees on Mental Healfh, invited himself to meetings with officials of the state OMRDD.
In a $66 billion state budget, the full cost of building this facility would rate barely a punctuation mark: about $650,000 – of which half would be reimbursed by the federal government. The state already pays the cost of caring for the children who would live there. Instead of sending the money to homes out-of-state, the money would be sent to the home here.
It might even cost less to do it this way, says Weisenberg.
Everyone in official Albany has been nice to him, he says. Some have been encouraging, but Weisenberg has nothing on paper to show that anything will happen. He said last week that OMRDD officials had assured him a home for seven children would be established on Long Island this year, but a spokesman there was circumspect when contacted.
The spokesman issued this statement: “OMRDD through the Developmental Disability Services Office on Long Island will continue to work with local provider agencies to determine the best way to care for this special segment of the population we serve. We will continue to explore all the possibilities based on prioritization of the needs in the region.”
Weisenberg, a man who has become emotional and driven on this issue, says he has been having dreams about the home, waking up sometimes in sweats of anxiety about the possibility that the opportunity will slip away.
Bob and Angie Policastro, who have been through the waiting game for a long time, assure him it will be OK. The legislative breakfast Weisenberg attended last October took place on the anniversary of their daughter’s death.
They see that as a good omen.
By Paul Vitello