Two year-old Zoey Klein ran around the hallways of the congressional offices chasing after Congressman Pete Olson while her older brother, four year-old Will, chuckled at the playful race. The two were blissfully unaware of the importance of this moment in their lives or the fact that the man who played around in the hallways with them is a member of the House of Representatives representing the 22nd District of Texas. Olson is one of several policymakers the children met during their family’s week-long visit to Washington, D.C.
Get a behind-the-scenes look at the trip to Capitol Hill
Zoey and Will are the children of Texas Children’s Hospital Neonatologist Dr. Jennifer Arnold and her husband, Bill Klein who are also the stars of TLC’s The Little Couple. The family visited D.C. along with representatives from Texas Children’s Hospital and patient families from hospitals across the nation to advocate for better health care for medically complex children. The collaborative effort is part of the annual Family Advocacy Day organized by the Children’s Hospital Association to bring awareness to children’s health care needs by bringing patients to The Hill to meet with representatives and senators and speak about important issues.
“It made me realize that the opportunity to be face to face with our politicians is very powerful,” said Arnold. “I felt that regardless of their political views and party lines, they really do want to listen to the people they represent. I also found it was very important not to hold a bias for any politician. Regardless of my views or theirs, children’s health care affects us all and it takes the support of all our legislators to improve it.”
This year was perhaps the most important in the history of the event as the families were asking their representatives to support a new bill which would affect kids with medical complexities. The week before the patient families arrived in D.C., a bipartisan group of representatives introduced H.R.4930, the ACE Kids Act, which stands for Advancing Care for Exceptional Kids. Congressman Joe Barton and Congresswoman Kathy Castor were the original bill authors with representatives Anna Eshoo, Gene Green and Jaime Herrera Beutler signing on to back the proposed legislation. The legislation is a major step in helping families of children with medical complexities who are forced to find care across state lines. Right now, Medicaid does not cover the expense of the health care services that are received if a child has to travel from Louisiana to Texas for specialized care at Texas Children’s Hospital. The bill would also allow for better coordination of care between hospitals.
“For my kids, it will mean the ability to travel across state lines to get the right specialty care for their medical needs without inefficiencies and poor coordination of care,” said Arnold. “For my patients it will allow me the ability to access medical records, tests, and information from other institutions across state lines and prevent the need to duplicate these in my care.
In a packed meeting room, the representatives who have signed on to support the bill along with the family advocates gathered for a press conference to announce the important new piece of legislation. The bill authors say this coordination of care would save between 13 and 15 billion dollars over a ten year time frame by improving processes and looking at how hospitals coordinate and monitor care.
“The legislation allows states who choose to participate, to modify their Medicaid program and transform it to address the health care needs of the sickest and costliest kids – medically complex patients,” said Texas Children’s Director of Government Relations, Rosie Valadez-McStay. “It will transform Medicaid for this population and improve health outcomes, establish pediatric quality guidelines, and move Medicaid for kids into the 21st century.”
“Models in place like Texas Children’s and others across the country really demonstrate that effective and aggressive care management reduces emergency room use, hospitalization and it really does drive down costs while improving quality,” said Patrick Magoon, President and CEO of Ann and Robert H. Lurie Children’s Hospital of Chicago.
For the 30 families who traveled to The Capitol to speak with their representatives and senators, it was an important moment in history. A chance to make a difference by speaking up for the health care needs of children like themselves, those who require a specialized team to care for their unique needs. Valadez-McStay said the trip is an opportunity for families like the Klein’s to be the voice of all children with medically complex conditions.
“Children don’t choose to be born poor. They don’t choose to be born sick,” said Director of Government Relations Rosie Valadez-McStay. “We need to create a health care system which allows all children to access the best care and this bill is a step in the right direction.”
Congressman Barton urged everyone to speak up because the only way important pieces of legislation move in congress is when voters speak up about why it’s important to them. It’s a chance for health care workers, patient families and anyone who cares for the health of children in our country to step up and join Speak Now for Kids, the grassroots effort which brings attention to this important cause.
“There are 5,000 to 6,000 bills introduced in every congress and less than 500 become law,” said Barton. “This is a bill that has a chance but it won’t go anywhere unless those across the aisle begin to feel that this bill needs to move. You have the ability to contact your congressmen and women to ask them to sign on as co-sponsors.”
As Zoey and Will made their way around The Hill carrying a sign which read, #Speaknowforkids, they may not have known the difference they were going to make, but it was one that may affect children’s health care, and their own, well into the future.
Three ways to join their efforts today:
Call, write, and reach out. Lawmakers are elected by you to stand up for you. Make your voice heard. Contact their offices and let them know why you care about Medicaid reform for medically complex children. Click here to find out who represents you.
Get social with your policymakers. Find the social media pages for your representatives and senators and post messages on their pages about why you want them to support the ACE Kids Act.
#Speaknowforkids. Use this hashtag and saturate social media with your stories about why this bill matters to you, your patients, and your family.