Six months after a task force was formed to examine the issue of long-term care for pediatric patients, Ed Romaine, the lawmaker behind the initiative, has left the Suffolk County Legislature to become Brookhaven Town supervisor.
So what happens to the effort to bring a facility to Suffolk County to help families that now have to travel off Long Island to visit ailing children?
On Tuesday, Legislator William Spencer, who chairs the health committee on which Mr. Romaine served, said he is committed to keeping the task force on target. “Even though Mr. Romaine is gone, there’s definitely some transition there,” Dr. Spencer said. “We are definitely trying to take up the slack on some of the important things he was working on.”
Dr. Spencer said the committee will hear a presentation today, Thursday, by county health commissioner Dr. James Tomarken, on finding a way to see the task force through.
Mr. Romaine did not return calls seeking comment.
For the families of young children in need of long-term medical treatment, Long Island offers few options, according to a News-Review special report in February.
Many of those children — like Riverhead teenager Michael Hubbard, who suffered severe burns and brain damage after a gel candle explosion last year — must be cared for elsewhere, sometimes hours away from their Long Island homes, the report showed.
Dr. Spencer said the issue is a serious one, not just on Long Island, but nationwide. And, he said, few statistics exist to show exactly how many Long Island families are affected by the dearth of long-term care options for kids.
“We know that there’s a need, but it’s identifying the extent of that need,” Dr. Spencer said. “Is it 100 kids? Is it 50 kids?”
One of the topics Dr. Tomarken’s presentation will address, Dr. Spencer said, will be how to make progress on the long-term pediatric care task force.
The task force, staffed by medical experts, will determine how many families are affected and identify potential solutions and their costs. Dr. Spencer said the county will have a better chance of convincing state agencies to assist in the solution if they can document a “critical mass” of children in need.
“We have to connect with the state, show we have a need here and find out the best solution for reducing the strain on these families,” he said.
In the meantime, Michael Hubbard is close to finding a new home, as a nonprofit group called New Beginnings is forging ahead with plans to renovate and open a small group home in Riverhead for young people suffering from traumatic brain injury.
The facility will be called Brendan House, after a young TBI victim who died in his sleep last June.
Construction and cleaning work has begun at the Sound Avenue property and, as of last month, the nonprofit had raised about 20 percent of the $200,000 needed to fully outfit the operation.
Karen Serva, the mother of a child named Caroline who needs long-term care after she suffered brain damage during a premature birth, has been an outspoken supporter of the task force. Like Michael, Caroline receives treatment at a hospital in Westchester, hours away from her home. Caroline was scheduled to come home this fall when a home through the nonprofit Angela’s House was completed, but the facility isn’t finished yet, she said.
Ms. Serva said it is important to continue to look for a solution to bring medically-dependent children home.
“It’s good that [the Legislature is] still talking about it,” she said. “It’s necessary to keep moving with it and to make sure the children aren’t forgotten.”