As Congress decides what provisions will be included in legislation that could impact the health care of all Americans, 4 year-old Madeline Flack will travel to the nation’s capital, along with dozens of other child patients, to meet with lawmakers to ensure health reform legislation works for children, too. Madeline will be joined by parents Tim and Bridgette and brother Eli.

The Flack family is traveling to Washington as part of the 2009 National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day on June 17 and 18, an effort to ensure national health reform legislation includes affordable health insurance coverage for all children and access to high-quality, specialized care. Nearly nine million children in the U.S. still lack health coverage. And while millions of children are covered by Medicaid, gaps in access to care exist due to low provider reimbursement for services.

One of the issues the Flacks will address is their concern lifetime insurance cap for chronically ill children. “During Madeline’s surgeries, we didn’t have to worry about quality, access or the cost of care. But we are concerned about insurance caps. For children with chronic conditions, hospitalizations, medication costs and regular tests add up quickly. What would Madeline do if she reached her $1 million cap before she is 18? Could she still get the same caliber of health care she has been receiving? We want to make sure that ALL children have access to health care and have coverage to pay for it,” Bridgette said.

Madeline was diagnosed with four congenital heart defects three years ago. The Flack family credits Madeline’s ability to live life to her full potential to the care she received at Le Bonheur Children’s Medical Center. The Flacks want to be sure all children are given access to the same excellent care Madeline received should they need it.

“Health reform represents an immediate opportunity to improve the health status of all Americans, particularly children—the most vulnerable among us,” said Lawrence McAndrews, president and CEO of N.A.C.H. “Covering all children, and making sure that they have access to the care they need regardless of their family’s financial situation or where they live, is an achievable first step towards covering all Americans,” he added.

Tim and Bridgette will blog about their trip to meet legislators. Follow their journey to the nation’s capitol.