• Article
  • December 17, 2018

Children's Hospital's Family Advocacy Day Brings Beltway to the Corn Belt

Children's hospital invites legislators to meet with families. 

Blank Children’s Hospital patient Sullivan Tow (center), and his family visit with Congressman David Young at the hospital’s Family Advocacy Day.
Blank Children’s Hospital patient Sullivan Tow (center), and his family visit with Congressman David Young at the hospital’s Family Advocacy Day.

As Jaci Strube explains, it's as if "the stars aligned" to help facilitate Blank Children's Hospital's first-ever Family Advocacy Day. Congress was on its August recess, and the Iowa State Fair—always a popular attraction for elected leaders to meet their constituents—was taking place just a few miles down the road. It was all coming together; Beltway advocacy was coming to the Corn Belt.

"It was a great opportunity to expose other parents to this type of event," says Strube, who serves on the Family Advisory Council at Blank Children's. "It also exposed our lawmakers to people they might not get to meet out in D.C."

In-person meetings "invaluable"

Strube's involvement in health care advocacy began with her son's cystic fibrosis diagnosis about 3 years ago, which she says pushed her to become "very passionate, very quickly." In addition to her work for Blank Children's, Strube is a diligent advocate for research and access to care for people with cystic fibrosis.

She's represented Blank Children's at the Children's Hospital Association's Family Advocacy Day, in Washington, D.C., where Strube and her colleagues at the Center for Advocacy and Outreach at Blank Children's saw how effective such an event could be back home. "The face-to-face contact is irreplaceable," Strube says. "It's invaluable from the parent perspective to be able to explain to them (congressional representatives) exactly what your child needs—it's empowering."

Congressman David Young and staff members for other Iowan congressional representatives joined six patient families for the advocacy day at Blank Children's. Patterned after CHA's Family Advocacy Day, the event included a crash course on advocacy for the parents, individual meetings with the congressional representatives and a tour of the hospital. Strube says she felt the hospital tour was particularly impactful for their guests from the nation's capital.

"When I think about how important it was for our congressman to see inside the hospital, I get goosebumps," Strube says. "To be able to say, ‘this is what the room looks like, this is the couch my husband and I slept on every night for two weeks while our son was being treated.' To be able to step into our shoes was really impactful for him."

Feedback exceeds expectations

Feedback on the event has been positive from all parties, according to Strube. The parents said they felt comfortable engaging their public representatives in the familiar, laid-back atmosphere. Feedback from the congressional guests could be measured by their commitment to the event.

"We really didn't know what to expect," says Chaney Yeast, LMSW, J.D., director of government relations and the Medical-Legal Project at Blank Children's. "But once we got them here, we saw them talking with their staff and rearranging their schedules so they could spend a good chunk of time here. That alone for me was a win—it was incredibly successful."

Surprisingly rapid results

As Strube and Yeast know very well, "wins" in political advocacy are often hard to measure and usually take months—if not years—to materialize. But among the characteristics that made Family Advocacy Day at Blank Children's unique was an unexpected twist: immediate gratification.

The Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act) is a key piece of legislation designed to improve care for children with medically complex conditions in Medicaid. Young had previously supported the ACE Kids Act but had not yet agreed to back the version of the bill reintroduced to Congress earlier this year. Each of the families that met with Young stressed the importance of the ACE Kids Act for the care of their children, and early the next morning Strube received an email from Young's staff: he was going to support the ACE Kids Act.

For Strube and her fellow parents, the news punctuated the value of their advocacy efforts. "It feels so good," Strube says. "As a parent you feel validated—that someone heard you and they get a piece of the picture that comes with managing a long-term chronic illness."

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