By  Congressman Randy Hultgren, (IL- 14) 

This summer an energetic 4-year-old from Illinois named Charlie and his parents came to my Washington, D.C. office to talk about Charlie’s rare brain disorder and the intricacies of his treatment plan and recovery.

Children in Illinois like Charlie and others across the country with complex medical conditions often require care from multiple specialists, for multiple years. These children’s lives become even more complex when limited access to the specialists they need force them to bounce from state to state for care. Managing these medical visits and treatments is time consuming, and in most cases, it’s parents who bear the responsibility of navigating confusing treatment plans and coordinating care and health coverage across different state programs.

Furthermore, the inefficiencies and redundancies in medical care come with a significant cost. While only 6 percent of children on Medicaid have complex medical conditions, they receive 40 percent of Medicaid’s spending on children.

I support the Advancing Care for Exceptional Kids Act of 2015 (H.R. 546), or ACE Kids, because it is designed to make the lives of these precious kids and their families easier while also reducing the financial burden on Medicaid.

ACE Kids gives states the option to create a Medicaid Children’s Care Coordination (MCCC) program, which will allow for the establishment of networks to coordinate care and share data among medical facilities, even in different states. This will ensure children with complex health problems are getting the care they require, in a way that is patient-centered and properly coordinated to improve health, eliminate redundancy and reduce costs—an estimated $13 billion in its first 10 years.

The ACE Kids Act, if passed, will not act as a directive from the federal government. This bill is another step in the movement toward state autonomy in health care. Through ACE Kids, states like Illinois will have the option to create an MCCC system optimized to work best for the children who live there. Participation in ACE Kids is optional not only for states, but also for families and for providers, so the bill improves freedom of choice for everyone involved.

Our children—Charlie and the millions like him—deserve a targeted, compassionate approach to their health care that removes barriers, streamlines services, and drives down costs for their families and the states in which they live.

The ACE Kids Act can help get us there, and I urge my colleagues to support this bill.

Randy Hultgren represents Illinois’ 14th Congressional District and is member of the Science, Space and Technology Committee.

—

This is the second in a series of semi-regular commentaries from people and organizations about what’s important to Chicagoland. If you have questions or wish to respond, feel free to forward your thoughts to WLS Program Director Peter Bolger.