Right now there are roughly 3 million children in the U.S. with complex medical conditions. Two-thirds of these children rely on Medicaid to access. These children represent 6% of kids accessing medicare but account for 40% of Medicaid costs for kids. This population is growing as medical advances allow kids with previously fatal diseases or conditions to live and thrive into adulthood.
Complex medical conditions have multiple causes including: prematurity, congenital heart disease, cancer, genetic conditions, and severe injury. These conditions require routine coordinated care by several specialists and therapists for proper management. Many patients and their families must cross state lines to see the appropriate specialist for rare conditions. The coordination of care of these conditions is complex and time consuming and often falls on the parents or guardians of these children.
This represents a problem as Medicaid’s state-by-state variability creates a fragmented and unnecessarily burdensome system lacking in care coordination, quality measures and cost containment.
The Ace Kids Act addresses many of these issues and is designed to improve overall care, simplify care coordination, especially across state lines, and decrease costs. It will create a nationally designated regional children’s hospital networks designed for children with medical complexity. Better coordination is based on successful care coordination models developed by individual children’s hospitals that have demonstrated significantly improved outcomes. With this bill, all children in the U.S., not just those fortunate enough to live around specific children’s hospitals, could benefit from these care coordination models. Better coordination of care can save money by improving efficiency and decreasing hospitalizations and emergency room visits. Care can be improved through better coordination, but also by better national data and quality standards that cannot be accomplished by the current state Medicaid model. Federal legislation is required because there is no national framework in place for this kind of model for children with medical complexity who have to cross state lines for their care.
The ACE Kids act (H.R.4930) was introduced to the House of Representatives by Representatives Joe Barton (R-TX) and Kathy Castor (D-FL) in June 2014. If you believe these kids deserve better access to improved care and more efficient healthcare coordination please voice your support to your congressman.
For more information, please click the links below:
https://www.govtrack.us/congress/bills/113/hr4930
http://www.speaknowforkids.org/ace_kids_act
https://beta.congress.gov/bill/113th-congress/house-bill/4930
Wilmot Vincent Bonnet, MD
Pediatric Advocacy 