Any parent who has been up all night with a child who is tearful, ill and distressed knows how exhausting caregiving can be. But what happens when caregiving never ends? What happens when a child is fragile, brain damaged, attached to feeding tubes, unable to recognize anyone and has a short life expectancy? What is the impact on families?
Robert Policastro of Smithtown know. His daughter Angela was severely brain damaged as a result of a “medical accident” that deprived her of oxygen at birth. When she died in October 1990, he was determined that no other parent would have to suffer what he and his wife Angie had to confront: a gap in the health care system for disabled, sick children whose parents are not equipped to care for them at home.
They had spent the six months after Angela’s birth at her hospital bedside only to discover that, when she came home, the severity of her brain damage made it too difficult for them to care for her, especially since they had another older child. Policastro believes that everyone has “individual limitations,” and “the most god-awful decision to make in your life” is to realize that a child is too ill be to taken care of in the family home. He also believes that the burden of care seems to fall inevitably on mothers, and the fact that most residential care facilities are no closer than a two-or three-hour drive upstate or out of state. The Policastros found that the most appropriate full-time care facility for Angela was in Connecticut, and once a week they made a three-hour journey to see their daughter. On one ill-fated trip prompted by a sudden and unexpected worsening of Angela’s health, their car broke down in a rainstorm. By the time they arrived, Angela had died.
Propelled by grief, the Policastros sought funding to establish a residential community for medically-frail and technology-dependent children on Long Island, one that would be easier for families to reach. To that end they enlisted the help of assemblyman Harvey Weisenberg (D, Long Beach), who is himself the father of a severely disabled 41-year-old son, and Independent Group Home Living (IGHL), based in East Moriches. With Weisenberg’s aid, $500,000 of the $66 billion state budget was earmarked for Long Island’s first group residential house for children like Angela. In late September, almost nine years to the day of Angela’s death, IGHL held a groundbreaking ceremony for this unique care facility located on Montauk Highway in East Moriches. When completed, the facility named in Angela’s honor will provide seven children between the ages of three and eight with 24-hour nursing care and seven families with respite and support.
Reaching out for solace and support, Policastro and his wife found none. Many people might have retreated to a bitter private grief, but they established Angela’s House so that parents could provide each other with advice and sometimes financial relief if reimbursement from insurance companies was delayed. (The main telephone number is 979-2620). Policastro, an unusually soft-spoken and thoughtful man, also organized conferences for parents of severely disabled children and for social workers who become a vital part of family life. He remarked that he and his wife feel “blessed” by the four children they now have but feels, too, that children like Angela are part of what he calls “silent population.” Through his efforts, he hopes to give such children the voice he believes they deserve.