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.
The Advancing Care for Exceptional Kids Act
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 of last year, the Advancing Care for Exceptional Kids Act was introduced in the U.S. House of Representatives. The “ACE Kids Act,” 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 Health System. “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.
A Medicaid reform to transform care
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 6% of Medicaid enrollees and nearly 40% 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 to help and get involved
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.