WASHINGTON, DC (PRWEB) NOVEMBER 28, 2011
Physician-Parent Caregivers (PPC) hosted its first annual benefit on October 20th to bring attention to the needs of young people living with chronic conditions and disabilities. The event served as the launch of a social movement to change the way the world treats young people with childhood-onset conditions and identify ways to improve the poor quality health care they often receive when transitioning into adulthood.
Guest of honor, Congressman Chris Van Hollen, spoke about the challenges these children and their families face. "The (health care) system is designed to provide one kind of care for people who are under 18 years of age, but you have a very different system for people once they get into young adulthood. That disjointed system has not helped (or) worked for many families."
Judy Woodruff, PBS NewsHour Senior Correspondent and emcee for the night, continued by saying, "We are able because of what we’ve done in our lives to reach out and have resources, but we know there are so many others out there who don’t have that kind of access and those kinds of resources, and that’s not the way a great country like this should operate. There are way too many young people with a variety of challenges and issues due to chronic illnesses…"
The event stressed the need to advance the quality of life and independence for all young people with chronic conditions and disabilities by providing them with a seamless transition from child-oriented health care to adult-oriented health care. Santi Bhagat, Founder and President of PCC, drew from her own experience as a physician and mother of a child with a chronic condition to underscore the need for improved quality of care.
"We experienced years of medical mismanagement, misdiagnoses, medical errors, and a complete lack of care coordination," explained Bhagat. "I knew that if it was difficult for me as a physician to get quality health care for my child, that it must be impossible for parents who didn’t have health care training."
Additional speakers at the benefit included: Madeleine Will, MA, Policy Director, National Down Syndrome Society; Former Undersecretary of Education; Constance Garner, PhD, EdS, MSN, RN, Policy Director, Foley Hoag, Former Policy Director, Disability and Special Populations, Senator Kennedy; Amy Long, MD, Pediatric Resident, Cincinnati Children’s Hospital; Jodie Senouillet, Program Manager, The Adolescent Leadership Council (TALC) program at Hasbro Children’s Hospital.