2014 Speak Now for Kids Family Advocacy Day Highlights
The Children's Hospital Association hosted its tenth annual Speak Now for Kids Family Advocacy Day on June 24-25 in Washington, DC, welcoming 29 "heroes" from children's hospitals across the country.
Participating families and hospital staff held about 120 meetings with U.S. senators and representatives, using their personal stories to shed light on the important role children's hospitals play in every community. Participants advocated for reforms to Medicaid on behalf of children with medical complexity.
ACE Kids Act of 2014
This year was a particularly exceptional year due to the introduction of the Advancing Care for Exceptional (ACE) Kids Act of 2014 (H.R. 4930), a bill which would advance care coordination for children with medically complex conditions enrolled in Medicaid.
On June 25, families and hospital staff joined members of Congress for a press conference on the ACE Kids Act. Amid the excitement were the bill's sponsors, Reps. Joe Barton (R-TX) and Kathy Castor (D-FL), as well as neonatologist Jennifer Arnold, MD and her family of TLC's The Little Couple. Also in attendance were bill cosponsors Reps. Anna Eshoo (D-CA), Gene Green (D-TX) and Jaime Herrera-Beutler (R-WA).
Mixing Work and Play
Although our heroes worked tirelessly on Capitol Hill, participants also had a chance to network with one another and celebrate their many accomplishments in the nation's capital.
On June 24, families enjoyed a sightseeing tour with stops at the Lincoln Memorial and the National Air and Space Museum. Others participated in a radio media tour, doing interviews with their hometown radio stations. In the afternoon, participants enjoyed an exciting training session, where they learned more about their unique roles as citizen advocates and ways to continue their advocacy back home.
In the evening, kids and grown-ups alike enjoyed catchy tunes performed by Cake for Dinner at the Patriotic Dinner Celebration, a party complete with caricaturists, a magician and appearances by superheroes Batman and Superman.
Making Strong Impressions
The 2014 Speak Now for Kids Family Advocacy Day yielded a record number of 183.6 million media impressions thanks, in part, to the introduction of the ACE Kids Act. The bill, along with Dr. Arnold’s expertise as a neonatologist, parent of children with medical complexity and a person living with a chronic condition, drew interest from the Sanjay Gupta, MD show on CNN. The national exposure, coupled with the local media outreach efforts of participating hospitals, helped raise awareness of the challenges that families with children with medical complexity face and the public policy solutions that children’s hospitals are advancing.