Health care reform has made important progress in ensuring that America’s 70 million children have health care coverage with benefits that meet their unique health care needs. Families of pediatric patients of America’s children’s hospitals understand that access to timely, high quality pediatric care can save lives. That’s why one Delaware, Ohio child and his family are traveling to Washington, D.C. to discuss their personal health care story with lawmakers who are carefully monitoring how health reform implementation rolls out.
Two-year-old Tony Highfield is joining more than 30 other families from across the nation as part of the June 15-16, 2010 National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day. This two-day event gives the Highfield family an opportunity to meet with members of Congress, including their own Congressman, Pat Tiberi, and Franklin County Congresswoman, Mary Jo Kilroy. They will also participate in a luncheon on Capitol Hill with Health and Human Services Secretary Kathleen Sebelius, a tour of Washington, D.C. and a celebratory dinner to honor the patients known as Family Advocacy Day “All Stars.”
The Highfield family came to recognize the importance of access to high quality pediatric care through their own personal experiences. Tony, a fraternal twin, was born at 24 weeks, weighing a mere 1.25 pounds and fitting in the palm of a hand. His sister, Ella, sadly passed away two days after birth. From day one, Tony fought for both his life and in memory of Ella’s as he faced just a 7 percent chance of survival.
In addition to all the complications that come with being such a tiny, premature baby, Tony’s lungs were working overtime as he battled Bronchopulmonary dysplasia (BPD) – a respiratory disease common in premature infants – and needed the assistance of a ventilator to breathe. Tony spent the first 135 days of his life at Nationwide Children’s Hospital, a national leader in treating BPD.
Once at home with his Mom and Dad in Delaware, Tony continued to fight. Eventually he only needed to see his doctors at Nationwide Children’s once every 6 months for follow-up exams and developmental assessments. Today, Tony is passing all of his screenings with flying colors and is a typical 21-month-old. He has fun chasing after his dog, Laci, playing with his Elmo toys and all of his neighborhood friends.
Advocates for accessible pediatric care point to key challenges that still exist for children and families seeking care, including:
- Low Medicaid reimbursement for pediatric care, which limits the number of Medicaid patients primary care pediatricians can afford to see and the number of physician residents choosing to pursue pediatric specialties;
- A national shortage of pediatric specialists;
- The threat of additional state-level Medicaid cuts, which can impact all children, regardless of health care insurance status;
- Inconsistent quality measures and incentives across states;
- Cuts in supplemental funding (disproportionate share hospital or DSH payments) that support care for Medicaid patients in children’s hospitals;
- Continued support for the Children’s Hospitals Graduate Medical Education program that enables children’s hospitals to train pediatricians and pediatric specialists.
About the National Association of Children’s Hospitals
The National Association of Children’s Hospitals – N.A.C.H. – is the public policy affiliate of NACHRI. N.A.C.H. is a trade organization of 141 children’s hospitals and supports children’s hospitals in addressing public policy issues that affect their ability to fulfill their missions to serve children and their families. N.A.C.H. fulfills its mission and vision through federal advocacy, collaboration and communication designed to strengthen the ability of children’s hospitals and health systems to influence public policy makers, understand federal and state policy issues, advance access and quality of health care for all children, and sustain financially their missions of clinical care, education, research and advocacy.
For more information on Family Advocacy Day and to follow the event on Twitter (#FAD10), visit http://www.childrenshospitals.net.