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Cover Story: Is there hope for these families?

PAUL SQUIRE PHOTO | St. Charles Hospital in Port Jefferson could serve as the host for a proposed 10-bed pediatric program.

Despite some progress on a transitional-care program for medically dependent children, a solution for long-term pediatric care on Long Island remains elusive.

Local politicians and hospital administrators say the issue will not be easy to resolve, since the program’s potential cost, as well other, more pressing medical needs in the area, are pushing it to the back burner.

According to a Jan. 12 Riverhead News-Review report, few local long-term medical care options exist for children like Caroline Serva, who suffered severe brain damage shortly after her premature birth in April 2010 and now requires constant medical attention.

Caroline’s parents, Karen and Rob, drive two hours twice a week from their Sound Beach home to Westchester County to see their daughter at Blythedale Children’s Hospital. Two Riverhead teenagers injured in near-fatal accidents last year, Michael Hubbard and Rashad Jackson, are also at Blythedale for rehabilitation.

“The issue is that parents should not have to drive many hours to visit their children who are in a fragile situation,” state Senator Ken LaValle (R-Port Jefferson) said in an interview. “You shouldn’t have a separation between parents and their children. We’ve worked with state agencies to have transitional care so these kids can be brought back and be taken care of … on Long Island.”

One possible solution is a proposed 10-bed pediatric program at St. Charles Hospital in Port Jefferson, Mr. LaValle said.

The program would be designed to wean fragile children off respirators with the goal of preparing them for long-term home care or recovery, said hospital CEO Jim O’Connor. Stony Brook University Medical Center would supply pediatric care specialists, while St. Charles and the affiliated Maryhaven Center of Hope, which provides services for the disabled, would have appropriate rehab facilities and staff.

“We’re looking to offer the continuum of care,” Mr. O’Connor said. “It’s difficult because one of the problems is most of these children are not in need of acute care. The child is literally sitting in the acute care hospital, taking up an acute care bed, and not getting the rehab care they need.”

Mr. O’Connor said the hospitals are in the process of submitting a certificate of need to New York State and will apply for grant money available under the state’s Health Care Efficiency and Affordability Law to start capital improvements for the proposed 10-bed program’s new facilities. He hopes to have the program up and running by the end of the year.

But despite some strides toward a transitional-care program, a huge void will remain in long-term care and rehabilitation for hundreds of Long Island families. Children like Michael Hubbard, seriously burned in a gel candle accident last year, would not be eligible for the St. Charles program since he has already made the transition into long-term care.

Mr. O’Connor said he would like eventually to expand the program to include long-term beds, possibly at one of the hospital’s nursing homes, while Mr. LaValle said the transitional-care program would be the first step towards getting pediatric long-term care facilities on Long Island.

Suffolk County Legislator Ed Romaine (R-Center Moriches) said the largest barrier to starting a long-term care program is “economy of scale,” since caring for medically-fragile children is much more expensive than caring for older patients.

Mr. Romaine suggested the John J. Foley Skilled Nursing Facility in Yaphank as the potential site of a new program, since the building has a wing with more than 50 beds that is empty due to rumors of the facility’s closing during the previous county executive’s administration.

“[Foley] handles cases for people who are going to live a long time and have multiple afflictions, which is a money loser for Medicaid,” Mr. Romaine said. “This may be something the John J. Foley nursing home could handle.”

Mr. Romaine said he has not previously suggested using Foley for long-term care because he wanted to avoid a perceived conflict of interest — his wife works at the nursing home as a housekeeper. And, while he recognizes the need for long-term care, he said the problem has been difficult to fix because no recent study shows exactly how many families need the service. Other concerns, such as county finances, have pushed the issue aside, but Mr. Romaine pledged to speak with county health officials about the problem.

He also said the hospitals in the East End Health Alliance, particularly Peconic Bay Medical Center, would be prime locations for a long-term care solution.

“Between the hospitals, each of whom have great competencies, that type of service should be provided,” Mr. Romaine said.

However, Peconic Bay Medical Center President and CEO Andrew Mitchell noted that adding a long-term care program would not be an easy — or cheap — fix.

“Pediatric long-term care is a highly specialized program that requires a very complex facility and program and an equally significant NYS review process,” Mr. Mitchell wrote in an email. “That is one reason that there is only a few such facilities in New York State.”

Mr. Mitchell said Peconic Bay has focused on expanding programs for older patients because of the East End’s growing retirement population, but he added the East End Health Alliance will complete a needs assessment soon and “can evaluate [potential pediatric long-term care] in the context of overall community need.”

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