It takes Karen and Rob Serva four hours from the time they wake up until the moment they can see their 1-year-old daughter Caroline.
Even though they have the routine down pat.
First, Karen has to make breakfast for Caroline’s siblings, 5-year-old Emily, and Bridget and Abigail, the other two of the couple’s year-old triplets. Next, they must get Emily on the school bus and wait for a family member to arrive to watch Bridget and Abigail.
Then comes the two-hour, twice weekly trip from their home in Sound Beach to Blythedale Children’s Hospital in Westchester County, where Caroline, who suffered severe brain damage shortly after her premature birth in 2010, is being cared for.
And for all their trouble, they’re lucky if they get to spend three hours with Caroline — who doctors say will never be able to walk, talk, sit unassisted or eat solid food — even if they put lunch off until after the visit.
“We want to maximize the time,” said Mr. Serva, a clerk at the state Supreme Court building in Riverhead.
Ms. Serva makes the trip twice as often as her husband, but that could change this spring, when she returns to her job, also at the courthouse.
The Servas are part of a growing number of Long Islanders whose children need round-the-clock medical care and can only get it at facilities off the island. There are an estimated 600 medically fragile children on Long Island, though many are cared for at home.
In Riverhead alone, two teens, Michael Hubbard and Rashad Jackson, had to be moved this year to the nearest such hospital — Blythedale in Valhalla, N.Y. — after near-fatal accidents. Michael was severely burned in a gel candle accident and Rashad was hit by a car. Michael’s mother Nancy Reyer stays at the facility full-time rather than making daily trips from the East End.
The lack of a nearby long-term care facility for children like these can wreak havoc on families, sometimes even ending marriages and leading to breakdowns for caregivers, according to advocates.
The Coalition for Medically Fragile Children — a network of New York parents, children’s advocates, children’s hospitals and home health providers — advocates for increased access to home care for those children, something it argues will save the state money in the long run.
In a study, the coalition says nursing training, increasing the reimbursement rates for home-care nurses and providing case management services as a Medicaid benefit will make home care more obtainable for families and will either be cost neutral or will result in savings for the state.
“When medically permissible and desired by the family, allowing medically fragile children to be cared for at home is best for their health and development,” the coalition states in the study conducted by the law firm Manatt, Phelps & Phillips, LLP.
Still, home care may be an option for some families, but it can be especially burdensome for older parents or those with other young children.
Yet there has never been a large movement to build a full-size facility on Long Island to serve such children, described as medically fragile or, sometimes, technology-dependent, according to aides to state Senator Kenneth LaValle (R-Port Jefferson) and county Legislator Ed Romaine (R-Center Moriches). Such a facility could also offer a respite, such as during family vacation, for those who opt for home care.
Right now, there is only one alternative on the East End for families with a child in need of long-term care, but it’s got a long waiting list.
On Montauk Highway in East Moriches, near the end of County Road 51, is a seven-bed facility. Inside Angela’s House, a yellow two-story home for technology-dependent children, the den and living area give no indication that it’s actually a nursing facility.
A few children in wheelchairs are gathered around the television, which has an attached Xbox 360 and other gaming consoles for when their siblings come to visit. Pictures and toys from home are the first thing one sees upon entering the bedrooms — each decorated with a colorful wall-sized mural — not oxygen machines and other medical equipment.
“The kids in here, we can give them the best possible life,” said Bob Policastro, executive director of the not-for-profit organization.
Mr. Policastro, who lost his medically fragilel 1-year-old daughter Angela in 1990, and his wife, also named Angela, have been fighting for these children for the past two decades. The facility was built in 2000 and is financed through state and federal funds and donations. There is another Angela’s House in Smithtown, and Mr. Policastro hopes to build a third soon in Stony Brook. That location will be the first to care for ventilator-dependent children like Caroline Serva.
The organization, which is affiliated with the Manorville-based Independent Group Home Living, also helps families coordinate home care and educates them about available assistance.
Mr. Policastro noted that although Stony Brook University Medical Center opened a state-of-the-art children’s hospital in 2010, the only such facility on Long Island, it does not offer long-term care for medically fragile children.
“The problem is, once kids are stable, there is no place to go,” he said.
And, he admits, Angela’s House is not large enough for the Long Island population. “There’s a waiting list the size of Texas to get in,” said Rob Serva, Caroline’s father.
Mr. Policastro and his wife and staff do what they can, but he said they know a large, 50-bed, nursing home on Long Island that can care for young and old — one that’s more home than nursing home — is what’s needed. So far, though, he’s been unable to convince a nursing home to build such a facility on the island.
“It’s tragic to think that after 22 years we still see these gaping holes in children’s services on Long Island,” he said.
Another problem is that there’s no 100 percent accurate umbrella medical term for the problems these children face, which makes it difficult to raise awareness and funds. Some of the children Angela’s House works with have severe cerebral palsy; others have disorders that are so rare they are the only ones in the state afflicted.
Meanwhile, parents such as the Servas will continue to make long drives to Westchester, Connecticut or New Jersey.
But that does free up time for them to write letters. And they’re urging others to do so as well, hoping that a movement to get such a facility built might finally take hold here.
In an open letter he’s circulated to elected officials, Mr. Serva shares his story, and the promise he made to his daughter to one day bring her closer to home.
“Long Island needs a loving and safe environment where children with complex medical needs can be cared for with the utmost quality of care,” the letter states. “Caroline needs to be back on Long Island surrounded by her family and, just as importantly, her family needs her.
“To kiss her and hug her each day, that is all we hope for.”