Coalition aiming to support, strengthen kids’ palliative care
Amid the worst of the steel industry’s collapse, a group of former steelworkers began disrupting Sunday services at churches across Allegheny County, hoping to draw the attention of powerful company executives where they worshipped.
When they showed up at the Fox Chapel Presbyterian Church in the spring of 1984, the Rev. John Galloway stopped the service and invited them to address the congregation. Their stories that day were followed by emotional meetings with church and community leaders in which they described life without medical benefits for their children, according to church records.
Charlie LaVallee, longtime executive director of the Highmark Caring Foundation and former Highmark Blue Cross Blue Shield vice president, called Fox Chapel Presbyterian the “catalyst” for the program he helped develop into state law that later served as the model for the federal Children’s Health Insurance Program.
“They listened to what people were going through,” said Mr. LaVallee, now CEO of Variety the Children’s Charity. “To get a leader like John, and a church that was looked at as a leader, that was critical.”
Now, another organization with roots at the church is gaining momentum, with medical professionals around the Pennsylvania, West Virginia and Maryland region taking note.
Formed in 2012 and based in a space donated by the church, the Pediatric Palliative Care Coalition aims to help those caring for children with life-threatening illnesses. Most hospices don’t accept pediatric patients, and few resources exist for families and medical professionals about end-of-life care for children, said coalition executive director Betsy Hawley.
“The biggest goal of the coalition from the get-go has been to bring people together, to let people know that they’re not alone,” she said.
In the early 2000s, to celebrate the church’s 50th anniversary, members decided to take on a project focusing on pediatric hospice and palliative care. The idea to form “Helping Hands - Healing Hearts” stemmed from the story of parishioners Joan and Allen Hogge, whose 7year-old son had died of a rare genetic disorder. The family had been living in Virginia at the time and helped form the nation’s first free-standing pediatric hospice in that state, Ms. Hawley said.
The church raised $50,000, much of it going to help palliative care at Children’s Hospital of Pittsburgh of UPMC.
In 2008, Estelle Richman, public welfare secretary under then-Gov. Ed Rendell, commissioned a task force on the subject whose recommendations included the formation of a statewide coalition.
The Pediatric Palliative Care Coalition includes members from Helping Hands and counts Children’s Hospital, Children’s Hospital of Philadelphia and Penn State Milton S. Hershey Medical Center among its members.
The coalition is currently advocating for two bills in the General Assembly involving pediatric palliative care. Ms. Hawley said she is especially focused on connecting families and medical providers and helping educate hospices about a provision in the Affordable Care Act that requires state Medicaid programs to cover both life-sustaining treatment and hospice for qualified children under 21.
Carol May, a coalition board member and nurse manager at the Supportive Care Program at Children’s, said six or seven medical centers focusing on pediatric palliative care have emerged nationwide, but children in less urban areas experience life-limiting illnesses, too, and “we need to be able to support them.”
“We need a national presence,” she added.
The group appears to be attracting attention, at least regionally. On a recent weekday, Ms. Hawley advised a group in Maryland trying to start its own coalition, and medical providers from West Virginia, Ohio and New Jersey are set to attend the coalition’s one-day educational conference this fall in Harrisburg..
More information: http://www.ppcc-pa.org.