“Who speaks for children?” That’s a question Children’s National President and CEO Kurt Newman, M.D., often asks when he talks to groups around the country. As he sees it, children’s hospitals and their pediatric specialists should follow two main principles: Speak out to our nation’s policy leaders, local government officials and other business leaders about what’s right for the most vulnerable among us, namely our children; and listen to parents, helping them find their voices when it comes to health care decisions.
Pediatric specialists have a unique opportunity to serve as the voice for children and families who are so often lost in state and federal health care policy debates. As the children’s hospital located in the nation’s capital, Children’s National has leveraged both its expertise and close proximity to key decision makers to engage in a dialogue about issues vital to the health and well-being of kids.
Amplifying the CHIP call to action
In a perfect example of politics getting in the way of doing the right thing for children, it took almost four months for Congress to extend funding for the Children’s Health Insurance Plan (CHIP), which provides health coverage for nearly 9 million children of working families in the United States. CHIP often supports the patients with the most medically complex needs – and is pivotal to their care at Children’s National and hospitals around the country.
During the agonizing wait for the extension, Dr. Newman, as well as countless Children’s National pediatricians and government affairs leaders, spent hours encouraging, asking and telling policymakers at every level of government about the importance of investing more in children, not less.
He stresses that it’s not just the right thing to do, it’s a wise investment. Spending dollars on children for prevention, early detection and education means that we have a healthier workforce, military and national community. It’s less expensive to treat mental and behavioral health problems, asthma and diabetes early on, before they become chronic issues.
The steady drumbeat from Children’s National supported national advocacy urging Congress to protect health insurance for the millions of children who rely on CHIP for all their health care needs.
The restored measure makes a world of difference for working families, but additional advocacy is needed as Congress continues to seek agreement on a long-term budget and other important legislation, some of which could have tremendous impacts on children’s health.
Leading a conversation about the needs of military families with terminally ill children
Concurrent care for terminally ill children – where lifesaving treatments such as chemotherapy and physical rehabilitation can take place alongside comfort measures and palliative care like 24-hour nursing – is covered by most insurance programs, including CHIP and Medicaid. However, until recently, military families covered under Tricare with such desperately ill children were forced to choose coverage for one OR the other.
Children’s National brought this challenge to its coalition partners at Tricare for Kids after watching several military families forced to make an agonizing decision between comfort and treatment. The coalition, a collection of military advocacy groups, children’s hospitals and other advocates, then fought hard to add a landmark provision to the National Defense Authorization Act allowing military families concurrent care coverage for their children. Implementing Tricare adjustments that deviate from Medicare provisions has been extremely difficult and politically fraught in the past, but when advocates and lawmakers focused on doing what’s right for kids, there was little to no Capitol Hill opposition and the change was easily passed in both the House and Senate.
In addition to advocacy, every day, a children’s hospital should help parents find their voices as active, empowered and engaged team members when it comes to caring for a sick child.
“It is crucial for a child’s care team to include his or her parents – the people who know them best,” Dr. Newman recently wrote. “I want every parent to feel comfortable being a true champion for their children at the pediatrician’s office or the hospital in the same way they champion them on the playing field or in the classroom.”
“That’s why I wrote the book Healing Children,” he says during book talks and interviews. “If parents knew what I knew, they’d make sure the doctors and nurses caring for their kids were experts in treating children. These stories show the power of pediatric specialty medicine, illustrate why parents should think ahead about how best to demand the care they deserve when something bad happens and show why we should always listen to parents’ concerns.”
Children and their families are at the center of every decision made at Children’s National, from day-to-day care planning to large scale business initiatives. When focusing on doing what’s right for them, everyone – the children, their families, the community AND the healthcare organization – benefits.