12th annual “Speak Now for Kids Family Advocacy Day” held in D.C.
More than forty families and hospitals across the United States are in the nation’s capital this week advocating for children’s health. Two-and-a-half year old Kayleigh Klatt and her parents joined Mt. Washington Pediatric Hospital (MWPH) to put a positive face on the mission of children’s hospitals at “Speak Now for Kids Family Advocacy Days,” sponsored by the Children’s Hospital Association (CHA).
Kayleigh was born on New Year’s Day 2014 and is on record as the smallest baby born in Maryland to be discharged home (330 grams/11.64 ounces). Born three-and-a-half months premature, she spent the first year of her life at three different hospitals, undergoing four operations. Kayleigh started her life at Mercy Medical Center and then moved to intensive care at the University of Maryland Medical Center at four-and-a-half months old, finally moving to Mt. Washington Pediatric Hospital at eight months for long-term rehabilitation. At almost 10 months she was deemed healthy enough to leave the hospital (still on a ventilator) and was discharged home.
Nicole Bent, Kayleigh’s mother, credits MWPH with teaching her what to expect as they transitioned from hospital to home and with equipping her to be a mom. Using the hospital’s state-of-the-art simulation lab, MWPH staff trained Bent on how to quickly read and respond to ventilator alarms, perform CPR and care for Kayleigh’s critical airway. “When we got home, the scenarios we practiced became very real world,” said Bent. “It was scary at first and I was frightened and distraught about my daughter’s home care. But as time has gone on, I have become confident and excited about the future.”
Kayleigh continues to suffer from chronic medical issues such as lung disease and myopathy and sees more than a dozen doctors and specialists such as a cardiologist, gastroenterologist, ENT doctor, physical, speech, rehab and feeding therapists and receives home nursing seven days a week. She is also learning sign language to improve her communication with others and learning to eat better through MWPH’s outpatient feeding program.
“We are in Washington to reinforce the need for continued support by the federal government for medically complex kids, particularly those who receive some sort of financial assistance,” said Dr. Richard Katz, Chief Medical Officer at MWPH. “We’re putting real people and real stories in front of Congress.”
The Klatt family and MWPH leadership will have meetings on Wednesday with Representatives Steny Hoyer and Chris Van Hollen and staff members from Senator Ben Cardin’s, Representatives Dutch Ruppersberger’s and John Sarbanes’s offices.
Of the nation’s 78 million children, approximately 3 million are medically complex and of that population, 2 million rely on Medicaid for access to multiple specialists, therapists and hospitals as Kayleigh does. This population represents 6 percent of all children with Medicaid coverage yet accounts for 40 percent of Medicaid’s spend on kids. Medicaid is the largest payer for these children because the medical services they require often far exceed the traditional benefits and coverage levels commercial plans provide. Children’s hospitals are the focal point of care for many of these patients, as pediatric specialists are often needed to provide expertise in treating their rare and complex medical conditions.
“Children with medical complexity have the highest needs and can be helped the most,” said Sheldon Stein, president and CEO at MWPH. “They are also the population that children’s hospitals like ours know most about.”
“Speak Now for Kids Family Advocacy Days” is being held in Washington, D.C. June 21-22, 2016.
About Mt. Washington Pediatric Hospital: Where Children go to Heal and Grow
Mt. Washington Pediatric Hospital provides family-centered, integrated care to children with serious, chronic or complex medical needs. Since 1922, the hospital has helped children heal from illness and injury, and now treats more than 8,000 patients each year. With locations in Baltimore City and Prince George’s County, the 102-bed post-acute hospital is a jointly owned affiliate of the University of Maryland Medical System and Johns Hopkins Medicine. For more information, please visit mwph.org.
About the Children’s Hospital Association
The Children’s Hospital Association is the national voice of more than 200 children’s hospitals, advancing child health through innovation in the quality, cost and delivery of care. For more information on Family Advocacy Day, visit www.childrenshospitals.org or follow the families on Facebook, www.facebook.com/speaknowforkids, and Twitter, @speaknowforkids.
