Children’s Hospital Colorado Urges Support for Legislation to Advance Care for Children with Complex Medical Conditions

AURORA, Colo.--()--One in 25 children is medically complex, and they include children who suffer from multiple medical conditions — like cancer, congenital heart disease, cystic fibrosis and down syndrome — as well as many children born prematurely who have a variety of lifelong, chronic health challenges.

Thanks to advances in medicine, many children with complex medical conditions that once had high mortality rates are now surviving — and thriving — into adulthood. In late June, the Advancing Care for Exceptional Kids Act of 2014 (H.R. 4930) was introduced in the U.S. House of Representatives. The “ACE Kids Act of 2014,” a bipartisan effort, would help coordinate care to ensure optimal outcomes for children with medical complexity who are currently insured under Medicaid, while helping to contain costs. ACE Kids would also help optimize their care before they transition to adult medicine.

“Care coordination is essential for the growing number of children who have complex medical conditions and need access to specialists and services,” said Jim Shmerling, CEO of Children’s Hospital Colorado. “ACE Kids will allow for better care coordination through nationally designated children’s hospital networks that cross state lines under Medicaid, improving care for kids and saving up to $13 billion in costs over 10 years for our health care system.”

Reports and analyses from the Children's Hospital Association document common gaps in care faced by Medicaid-covered children with complex medical conditions who often cross state lines to access specialized care.

For example, consider Joshua "Junior" Montoya, who at age four was like most other boys his age. He was going to school and playing baseball in his home state of New Mexico. That all stopped when he suddenly got sick, and what was causing his illness was a mystery that took several hospital visits to solve. After doctors ruled out the flu and asthma, an unexpected clue on an X-ray helped them figure out that Junior was suffering from a rare disease known as dilated cardiomyopathy. Junior was airlifted to University of New Mexico Hospital in Albuquerque. After a little more than a week, the decision was made to move him to Children’s Hospital Colorado for more advanced treatment. Junior was connected to a machine that did the work his heart couldn’t do on its own.

The Montoya family has been at Children's Hospital Colorado since just before Thanksgiving last year. The hospital became their home while they waited for a heart transplant, which Junior received in mid-June. The Montoyas now hope to return home to New Mexico later this month.

Under the current Medicaid system, parents of kids with multiple, life threatening disabilities struggle to coordinate the complex, multi-state care of their kids. Approximately two-thirds of the 3 million children with medically complex conditions in the U.S. are covered by Medicaid. These children account for an estimated six percent of Medicaid enrollees and nearly 40 percent of Medicaid costs for kids. Medicaid reform proposed under the ACE Kids Act is an important step to transform care for Junior and children who, like him, have medically complex conditions. It will allow these kids to receive optimal care in the best setting at the right time.

How You Can Help

For more information on how to get involved, join the Children’s Hospital Colorado Grassroots Advocacy Network to find out how to call members of Congress and urge co-sponsorship of the Advancing Care for Exceptional Kids Act of 2014 (H.R. 4930).

Join the ACE Kids Thunderclap

Thunderclap is an online tool designed to amplify a message using collective social networks. The Thunderclap campaign, sponsored by the Children’s Hospital Association, is aimed at raising awareness about the ACE Kids Act of 2014, specifically the current Action Alert focusing on obtaining cosponsors. The Thunderclap provides another way to highlight the challenges facing medically complex kids and how children's hospitals are leaders in providing care and crafting policies to take care of these kids.

To participate visit http://bit.ly/ACEKidsThunder and sign-up using a Facebook, Twitter and/or Tumblr account. At noon EDT on September 8, participants will welcome Congress back to work with a simple message, which will be sent out automatically from individuals’ selected account(s). With hundreds of supporters’ messages posting simultaneously, the Thunderclap aims to make #ACEKidsAct a trending topic across social media.

About Children’s Hospital Colorado

Children’s Hospital Colorado (Children’s Colorado) has defined and delivered pediatric health care excellence for more than 100 years. Founded in 1908, Children’s Colorado is a leading pediatric network entirely devoted to the health and well-being of children. Continually acknowledged as one of the nation’s top ten Best Children’s Hospitals by U.S. News & World Report and Parents magazine, Children’s Colorado is known for both its nationally and internationally recognized medical, research, education and advocacy programs, as well as comprehensive everyday care for kids throughout Colorado and surrounding states. Children’s Colorado also is recognized for excellence in nursing from the American Nurses Credentialing Centers and has been designated a Magnet® hospital since 2005. The hospital’s family-centered, collaborative approach combines the nation’s top pediatric doctors, nurses and researchers to pioneer new approaches to pediatric medicine. With urgent, emergency and specialty care locations throughout Metro Denver and Southern Colorado, including its campus on the Anschutz Medical Campus, Children’s Colorado provides a full spectrum of pediatric specialties. For more information, visit and connect with Children’s Colorado on Facebook, Twitter and Pinterest.

Contacts

Children’s Hospital Colorado
Elizabeth Whitehead,
Pager: 303-890-8314

Contacts

Children’s Hospital Colorado
Elizabeth Whitehead,
Pager: 303-890-8314