DALLAS, June 25, 2014 — Children’s Medical Center Dallas patient Emmy Kaighan has experienced more unusual events at the age of seven than most adults experience in their entire lifetime. At the age of three, Emmy was diagnosed with a rare occurrence of Acute Disseminated Encephalomyelitis (ADEM), a disease that aggressively attacked the healthy tissue in her brain. Four years later, Emmy used her tragedy to ordain another exceptional event: members of the U.S. House of Representatives from both sides of the aisle joining together to introduce a legislative solution to help other children with complex medical conditions.
Emmy’s journey started when she woke up one morning without the ability to walk or talk. After she arrived at Children’s, Emmy spent 31 days in a medically-induced coma in Children’s intensive care unit. Benefiting from the unique expertise of her physicians and innovative technology available at Children’s, she survived. However, Emmy continues to receive outpatient therapies to support her physical and cognitive abilities.
Children with medical complexities like Emmy’s require a coordinated health care delivery system. Emmy is fortunate that all her physicians and services are available through Children’s, and that her parents have private medical insurance. However, many children with medical complexities rely on Medicaid and do not live near one of the top pediatric centers in the country, thus requiring care at institutions within their state and even outside their home state.
“Children with complex medical conditions require a unique coordinated health care delivery system. Unfortunately, the current Medicaid system doesn’t support the model that we know is best for our patients,” said Christopher J. Durovich, chief executive officer, Children’s. “At Children’s Medical Center, we already provide care coordination for complex medical needs and we believe it is time for Medicaid’s delivery system to catch up to our advances.”
Today, U.S. Representative Joe Barton (Texas), along with several cosponsors, unveiled the ACE Kids Act of 2014 (H.R. 4930), which reforms Medicaid to meet the needs of these unique children by creating nationally designated networks to coordinate the care for the most medically complex children. These “networks” would employ national quality standards and coordinate care, both essential to improving quality and saving money.
While medically complex patients represent less than 10 percent of children enrolled in Medicaid, they account for 40 percent of all Medicaid spending on children. This proposal could save states and the federal government approximately $13 billion over 10 years.
Durovich added, “Congressman Barton’s legislation will improve the care that these children receive and reduce costs at the state and federal levels. I applaud his efforts to ensure that children with complex health needs receive the first-rate care they deserve, in the most efficient and child-focused means, regardless of where they live.”
After attending a press conference to announce the bill’s introduction, Emmy and her family met with Reps. Bill Flores, Michael C. Burgess, M.D., Pete Sessions, Sam Johnson and Ralph Hall to request their support for this important legislation.
The Plano-area patient and her family were in Washington D.C. to attend Speak Now For Kids Family Advocacy Day 2014, hosted by the Children’s Hospital Association. The event brings together patients from about 30 children’s hospitals nationwide with press legislators to support children’s health programs.