Help support the ACE Kids Act to promote the medical home concept for medically complex children on Medicaid

The Advancing Care for Exceptional Kids (ACE) Act was first introduced in the House in June 2014 by Joe Barton (R-Texas) and Kathy Castor (D-Fla) to improve care for children with complex medical needs on Medicaid. Recently, it has been introduced to the Senate on January 29th, 2015 and re-introduced in the House on January 27th, 2015 with bipartisan support. These children have multiple diagnoses and often require multiple specialists which is why we need to support this legislation so that they can have a place to call their medical home.

One of the goals of the ACE Kids Act is to improve coordination of care for children so that care is less fragmented and families become less burdened. It particularly addresses the fragmentation of care that occurs across state lines when patients are not being seen in their home state. Since Medicaid is a state-based program, it severely restricts the ability for these children to seek medical care if they happen to be traveling and fall ill. Additionally, some of these children have specialists that may not reside in their home state and since Medicaid won’t pay for it, it becomes difficult for them to continue seeing these specialists.  Sadly, these barriers prevent access to treatment for the children who need it most.

The proposed law would require a state to enroll eligible children to a nationally designed children’s network. These designated MCCC – Medicaid Children’s Care Coordination programs – are required to submit a care management network and coverage plans that are built upon medical home models. The government plans to work with the Children’s Hospital Association and the American Academy of Pediatrics to define quality assurance and improvement protocols and procedures for this program. With emphasis on care management services,  the hope is to reduce unnecessary hospitalizations since care is more centralized, the patient’s “baseline” status is better understood, and specialists can coordinate with one another for the next appropriate step.  This policy has been projected to save potentially $13 billion over the first 10 years compared to our existing system based on reports and analyses from the Children’s Hospital Association. These types of children constitute 6 percent of kids with Medicaid, but are responsible for 40 percent of Medicaid costs.  

A highly coordinated system of care would not only provide continuity of care, but would streamline their needs in one medical home. The details of how this exactly would be achieved are still being planned in conjunction with the Children’s Hospital Association and the AAP but would likely involve outpatient clinics and community services.  This would ideally decrease medical error, increase follow-up rate, and provide opportunity for specialists to communicate with one another. When these children are treated outside of a medical home concept, care is extremely expensive and complex as coordination is especially difficult when specialists are not within the same hospital network and sometimes not even in the same state. The responsibility then falls to the parent/guardian of these children and that type of burden is far too great for any one parent/guardian.

Think about the child with history of prematurity, cerebral palsy, seizure disorder, unilateral kidney, congenital heart disorder, trach and g-tube dependence, and on dialysis. Wouldn’t it be best for this child to have a coordinated medical home?

Please write to your House representative and Senator in support of this bill!

For more information:

Jennifer Nguyen Chew, MD


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