In June 2024, Children’s Wisconsin sent a pint-sized representative to Washington, D.C. Wearing bright purple glasses and an infectious smile, 4-year-old Caroline Archibald charmed everyone she encountered as she wandered the halls of Congress.
“She loves all the high fives and fist bumps,” said Caroline’s mom, Becky. “We were very excited to have this opportunity. We feel pretty strongly about making sure all kids have access to the care that they need.”
Organized by the Children’s Hospital Association each summer, advocates and their families from across the country come together at the annual Family Advocacy Day in Washington, D.C. to speak to members of Congress about the care they’ve received at their local children’s hospitals and important policies impacting kids’ access to care.
Caroline, who has Down syndrome, spent three months in the Neonatal Intensive Care Unit (NICU) at Children’s Wisconsin and then underwent open-heart surgery at the Herma Heart Institute. She continues to see 11 specialists at Children’s Wisconsin — some at the Kenosha Clinic near her home and some at the Milwaukee hospital — and is part of the Complex Care Program, which coordinates care for kids with medical complexity.
“It’s hard to even put into words how amazing it has been. We’ve felt like she’s getting top-notch care in all aspects,” said Becky. “Children’s Wisconsin really goes above and beyond to make sure that families are taken care of.”
Advocating for kids and families
Ensuring the best care for kids involves more than just treating patients in the hospital or clinic. That’s why Children’s Wisconsin supports policies and legislation that help kids get the care they need. It also advocates for other issues that affect children’s health, including vaccinations, gun violence prevention and access to affordable and nutritious food.
“To stay current on the ever-changing political landscape, the Children’s Wisconsin Government Relations team monitors hundreds of bills each year,” said Jodi Bloch, director of state and local government relations for Children’s Wisconsin. “We also partner with other organizations to help amplify the priorities of Children’s Wisconsin.”
“We work to influence policy that impacts the lives of kids and families,” said Jennifer Mance, director of advocacy for Children’s Wisconsin. “I think it’s important that as a health care organization, we raise our voices on behalf of the patients and families that we serve.”
For the 2024 Family Advocacy Day, the Children’s Wisconsin team focused on two issues: funding to support the training of pediatric clinical professionals through the Children’s Hospital Graduate Medical Education (CHGME) program, and supporting kids on Medicaid and the Children’s Health Insurance Program (CHIP), which provide no-cost or low-cost insurance coverage for eligible families.
Children’s Wisconsin is home to the only CHGME program in the state. While CHGME hospitals represent just 1 percent of all hospitals in the United States, they train more than 50 percent of the nation’s pediatricians and pediatric specialists — including the multitude of specialists who care for Caroline.
“As our nation is facing unprecedented health care workforce shortages, it is more important than ever that we invest in the strength of our pediatric workforce through the CHGME program,” said Lindsay Punzenberger, director of federal government relations at Children’s Wisconsin.
Caroline’s story underscores the need for both priorities. While her family has commercial insurance, they’ve relied on Medicaid as secondary insurance to help Caroline access the care and supplies she needs. She’s far from the only one: In 2023, approximately 53 percent of Children’s Wisconsin patients were insured by Medicaid.
“We’re always advocating to strengthen Medicaid for kids by showing all the ways that Medicaid wraps around kids to support their health and well-being,” said Lindsay.
While Caroline is fortunate to live relatively close to her medical specialists, hundreds of children travel from out of state to see specialists at Children’s Wisconsin each year. During Family Advocacy Day, the Children’s Wisconsin team also urged members of Congress to support the Accelerating Kids’ Access to Care Act, which would make it easier for children insured by another state’s Medicaid program to get timely access to care.
During Caroline’s visit to D.C., her family and Children’s Wisconsin staffers met with U.S. Sen. Ron Johnson, U.S. Sen. Tammy Baldwin and U.S. Rep. Bryan Steil, who represents Caroline’s district. They also met even more members of Wisconsin’s Congressional delegation because representatives were just drawn to Caroline.
The facetime is valuable as members of Congress weigh various priorities.
“It was really nice to be able to connect on a more personal level,” said Becky. “I think sometimes it’s easy to get caught up in the wording of the bills and that kind of thing, but it’s important to put a face to all of these decisions that actually affect real families.”
Year-round advocacy
Family Advocacy Day is just one of the ways that Children’s Wisconsin works to educate lawmakers on issues that affect kids’ lives. “Children’s Wisconsin values our partnership with organizations and associations across Wisconsin and across the nation,” said Jennifer. “When we join together to participate in advocacy days, our collective voices are stronger.”
For example, each spring, Children’s Wisconsin staff and patient families join the Wisconsin Hospital Association’s Advocacy Day at the State Capitol in Madison.
“The engagement of Children’s Wisconsin at Wisconsin Hospital Association’s Advocacy Day is pretty incredible,” said Jennifer. “It’s a great way for our employees and families who are interested in advocating but don’t have a ton of experience to join us.”
Children’s Wisconsin advocates have also attended advocacy days hosted by the American Heart Association and the Wisconsin Anti-Violence Effort Educational Fund, among others.
In addition to going to lawmakers, the Government Relations team also brings local, state and federal policymakers to Children’s Wisconsin. “We bring people into the hospital or to a clinic to see what we do and make the connection to how policy impacts the care we provide,” said Lindsay. “Our staff and patient families are our best advocates, so we like to give them a voice as well.”
The Government Relations team also encourages grassroots advocacy year-round through the Children’s Advocacy Network (CAN), which sends out action alerts to more than 10,000 advocates whenever a relevant issue is coming before lawmakers. By providing letter templates that advocates can personalize, CAN makes it easy for people to take action with just one click.
Since CAN’s inception in 2010, more than 60,000 messages have been sent to local, state and federal lawmakers on behalf of Wisconsin kids’ health and well-being.
“We have a really active, dedicated group of advocates,” said Jennifer. “From a grassroots perspective, we engage on issues that focus on the whole child as we know the issues that affect kids extend well beyond our hospital walls.”
Another way to advocate for kids is at the voting booth every election, Jennifer noted. “Kids can’t vote,” she said, “but you can as their trusted adult.”
Interested in joining Children’s Wisconsin’s advocacy efforts? Visit the Advocacy webpage to learn more, join the Children’s Advocacy Network and share your story.