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A Place to Call Home

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— January 15, 2019

A Place to Call Home

  • Angela's House provides resources, support and housing to families of children with special needs.
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Bob Policastro received devastating news after the birth of his second child: His newborn daughter, Angela, had severe brain damage. The diagnosis was just the first shock; Policastro also discovered that most children with similar medical needs lived in the hospital.

“It was almost impossible to care for a child that needed nursing care and specialized medical equipment at home,” he recalls. “There were no local organizations—like nursing homes for children—that could continue her care. It made a horrible situation so much worse.”

Thanks to diligent research, Policastro and his wife, Angie, who live in Hauppauge on New York’s Long Island, found a hospital in Connecticut that provided long-term therapeutic and nursing care in a loving environment. It was the best place for their daughter to receive specialized care, and Angela remained there for almost a year before dying not long after her first birthday.

To honor Angela’s life, the Policastros established a nonprofit organization. Angela’s House provides resources to help Long Island families navigate the complexities of raising children with serious medical needs and obtain supportive services to improve their quality of life.

“I didn’t want to see other families going through what we did,” Policastro explains.

Reaching Out to Families

Since its founding in 1992, Angela’s House has helped families whose children were diagnosed with disorders such as Down syndrome, cerebral palsy and muscular dystrophy. Some children are born with serious medical needs; others require specialized care due to illnesses, accidents or injuries.

The nonprofit operates three residences where children receive 24/7 medical care in home-like environments. In 2013, the home in Stony Brook, New York, was the first in the state to provide residential care for children on ventilators.

Angela’s House also helps families caring for children with special needs in their own homes through programs ranging from case management and counseling to grants and reimbursement programs. These services ensure that children have access to medical equipment and therapies, medications and nursing support. The nonprofit also helps coordinate crisis services, provides reimbursement for home modifications such as wheelchair ramps and assists with emergency respite care for weary caregivers. “Insurance covers such a minute percentage of what families need,” Policastro says. “There are major financial repercussions [associated with raising a child with serious, ongoing medical needs]. If insurance and Medicaid deny coverage, we want to be able to help.”

Stepping Up

Frank Cafaro was drawn to the good work Angela’s House was doing for families on Long Island and started volunteering for the nonprofit five years ago. Cafaro, a supervisor at NaturesPlus, pitched in with the annual holiday parties, saying, “I wanted to try to make the holidays a little brighter for these families.”

In addition, Cafaro started a toy drive at NaturesPlus in 2018. He expected the inaugural effort would generate a small number of toys, but was surprised when his coworkers rallied for the cause, collecting up to 400 toys ranging from action figures and board games to stuffed animals.

When Cafaro delivered the toys to the party, he recalls, “The kids were going crazy; they all had huge smiles on their faces.” The toy drive was so successful that he is already planning for the 2019 season.

The annual holiday party is just one of the special events Angela’s Households throughout the year; the organization also hosts a golf outing, gala and candlelight vigil. For the families, Policastro believes the holiday party— which includes a catered meal, DJ, dancing and, of course, presents—is one of the most memorable and important events of the year.

“The parties are a chance for the parents to meet and support each other,” Policastro says. “I know we can’t change their diagnoses, but I want to do whatever I can to bring joy to the children and these parties are part of that.”

Angela’s House by the Numbers
1992
The year Angela’s House was founded
10,000
The number of children with medical issues that Angela’s House has helped since it was founded
611
The number of children who receive assistance annually through programs such as care at-home case management and help with emergency respite care, home modifications and adaptive technologies

$339,393
Total amount collected through fundraising efforts in 2016

A Light in the Darkness
Special education teacher Jessica Leest admits that she was in denial when doctors told her that her son, Ethan, had severe disabilities and would need lifelong specialized care. A healthcare team referred the Long Island mom to Angela’s House, but she refused to call.
“I thought he’d outgrow it and we wouldn’t need help,” she recalls.
When it became clear that Ethan, who was having up to 300 seizures per day due to a rare form of epilepsy, was going to need ongoing help, Leest made the call. Angela’s House connected her with a case manager who helped access medical supplies and care.
“We have great insurance, but it covers 80%. We’re talking about having hundreds of thousands of dollars in medical bills, and 20% of that adds up,” Leest says. “Sometimes insurance denies things we need, so we’re left figuring out how to pay for them.”
After insurance denied her claim for a specialized wheelchair and supportive chair for the bathtub, Angela’s House stepped in to provide funding. The nonprofit also helped the family navigate the maze of paperwork required to secure Medicaid coverage, provided modest reimbursement for respite care and shared contacts for local contractors that could help with home modifications.
The help Angela’s House provided meant that Leest could focus on caring for Ethan rather than dealing with red tape.
“I’m so glad that I made the call to Angela’s House,” she says. “They are a voice for families and children who don’t have a voice of their own. I don’t know what we’d do without them.”

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