Editorial: The fight for medically fragile children

PAUL SQUIRE FILE PHOTO | New Beginnings Brendan House on Sound Avenue in Riverhead.

Members of the Suffolk County Legislature must not take their eyes off the ball when it comes to finding a way to help children in need of 24-hour medical care outside the home. Lawmakers should stay focused on the issue — especially with Ed Romaine, who had championed the cause, now gone from the Legislature. Parents and siblings, some of whom are our neighbors, should not have to live hours away from the children who need them most. Not here; not anywhere.

According to a News-Review special report in February, no major facilities exist in Nassau or Suffolk, or even New York City, where children with serious injuries or other medical issues can get round-the-clock care and live long-term. (Plenty of such facilities, however, are available for the elderly, paid for through Medicare or Medicaid.) For such a populous area, that situation is unacceptable, although its remedy is admittedly financially challenging. Keep in mind, with advances in life-saving technologies, children today often survive accidents that would have been fatal in the past. Such incidents, experts say, are becoming more and more common, so it’s vital that we as a region stay ahead of the curve.

The Legislature’s health committee chairman, Legislator William Spencer (D-Huntington), told the newspaper Tuesday that he will make sure the newly formed pediatric care task force stays focused on the task at hand. First and foremost, he said, officials will have to figure out just how many children and families in Suffolk County find themselves in the most unfortunate situation of being split apart due to medical issues.

An estimated 600 children deemed “medically fragile” live on Long Island. While many are cared for at home, others need ventilators and other pricey equipment to keep them alive and therefore need to live in a facility like Blythedale Children’s Hospital in Valhalla, N.Y. If the task force finds the numbers in Suffolk aren’t large enough to impress the state and get help on the issue, it is important for our elected leaders to somehow get the ear of officials in neighboring counties to boost the count of children in need of such care. Surely a facility in either Nassau, Suffolk or Queens would be of great benefit to all these children.

The trick is finding a motivated lawmaker to do all this now that Mr. Romaine has moved on. The affected families live through enough day-to-day hardship to keep up the fight, and keep applying pressure on elected leaders. But who? Maybe William Spencer — a physician — is that person. Or perhaps state Senator Ken LaValle can push for a new wing at Stony Brook Children’s Hospital. 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.

In the meantime, it’s incumbent on our local governments to help establish smaller facilities such as Brendan House, now in the works on Sound Avenue, and to support existing facilities like the seven-bed Angela’s House in East Moriches. Aid can come in the form of tax abatements or land donated through forfeitures to the county over back taxes.

We cannot fail the very children who need us most.