The Weinberg Family Cerebral Palsy Center was featured in New York-Presbyterian (NYP)’s January 2014 edition of Advances in Orthopedics. Read the complete article here:
Medical advances in recent years are helping individuals with cerebral palsy to live longer, more productive lives, with nearly 90 percent of children with CP now surviving into adulthood. At the same time, this encouraging news also presents unique challenges in care delivery for individuals with CP, as well as for the medical community.
Approximately one million people in the United States today are diagnosed with cerebral palsy. “There are even more when you expand the definition – an additional three or four million have childhood-onset neuromuscular disabilities,” says David P. Roye, Jr., MD, Director of Pediatric Orthopedic Surgery at NewYorkPresbyterian/Morgan Stanley Children’s Hospital and Executive Medical Director of the recently established Weinberg Family Cerebral Palsy Center.
“There are now more adults than children living with CP,” says Dr. Roye. “While pediatric medicine is no longer appropriate for them, adult healthcare systems have not yet been able to provide support for adults with CP who face new and emerging health issues. The Weinberg Family Cerebral Palsy Center is designed to meet the needs of this adult population by providing integrated health care to patients of all ages with cerebral palsy.”
An Inspiration Becomes Reality
“I’m at an age where many of the patients I began seeing in the 1980s and 1990s are now turning to me for help as adults,” explains Dr. Roye. “I could no longer care for them within the confines of the children’s hospital. This is what inspired me to develop and grow the Center.” According to Dr. Roye, care has been truly lacking for individuals with childhood-onset neuromuscular disabilities who leave the pediatric sphere and enter adulthood.
“These kids are in a wonderful pediatric hospital like Morgan Stanley Children’s Hospital at NYP with multispecialty care,” he says. “But then many of them drop off the map entirely between the ages of 18 and 20. All of a sudden, the hospital can no longer treat or admit them. There are literally hundreds of thousands of adults with CP who do not have services that are adequate for their needs.” Dr. Roye envisioned a medical home for all patients with CP with access to specialists who could manage their care over their lifetime.
The Weinberg Family Cerebral Palsy Center is the first of its kind in North America to have assembled a full range of specialized healthcare services in one location.
“Our focus is to provide lifespan care,” says Dr. Roye. “When individuals with CP reach age 40 or 45, things begin to go wrong. They start to develop arthritis, their function starts to deteriorate, and they’re not able to cope. That’s when they seek care.”
Care to Call Their Own at NYP
With generous funding from Debby and Peter A. Weinberg, in recognition of the support and care that their youngest son, who was diagnosed with a rare form of CP at age three months, received at Columbia, the Weinberg Family Cerebral Palsy Center formally opened in January 2013. The Center offers medical, surgical, and rehabilitation services, including physical and occupational therapy, Botox treatment, surgical procedures, orthotic and prosthetic interventions, and wheelchair clinics, among others. Additional support is provided by speech and language pathologists, and social workers, who provide guidance on community resources.
“More than 40 physicians from 20 specialties have signed on to see our patients,” notes Dr. Roye. “With our expertise in cerebral palsy, we provide them with information about common issues in CP, such as early joint degeneration or how conditions such as pregnancy affect this disorder. These specialists are there for them, listen to their problems, and take the time necessary to examine them and address their concerns.
“We also have multiple subspecialty partners,” says Dr. Roye. “If my patient needs a total hip or knee replacement, hand surgery, general surgery, cardiac surgery – any necessary medical or surgical procedure – we’re able to refer the patient to an appropriate and knowledgeable specialist within our medical center.”
The Center also helps patients attain as much independence as possible. “We want to empower them to take control of their lives, directing them to professionals who can help, for example, with living arrangements, social setting issues, and continuing education programs,” says Dr. Roye.
The Weinberg Family Cerebral Palsy Center is also extending NYP’s and Columbia’s current research portfolio. While basic science research focuses on uncovering the disease mechanisms for childhood-onset neuromuscular disorders, clinical research conducted at the Center is evaluating new treatments and the impact of these treatments on patient outcomes and quality of life.
The Center is also in the planning stages for the establishment of the first-ever nationwide CP patient registry that will help researchers to overcome longstanding hurdles of insufficient patient and outcomes data for CP, while providing an important platform for multidisciplinary longitudinal research. Dr. Roye adds, “Our goal is for the Weinberg Family Cerebral Palsy Center to become a nationwide model for an integrated research and treatment program to help children and adults with CP achieve optimum management of their condition.”