Improving the System of Care
In February 2008, NICHQ kicked off its "Improving the System of Care for Children and Youth with Special Healthcare Needs: Epilepsy and The Newborn Hearing Screening Programs" Learning Collaborative, funded by a grant from the Maternal and Child Health Bureau. One of the many notable improvements has been made by Florida's Epilepsy Foundation team. Recognizing the local need for access to primary care as an essential link to improving health care in the population, Project Leader Judy Clauser looked to her Title V agency. With the support of Title V Director, Phyllis Sloyer, eligible families have been able to navigate Children's Medical Services (CMS). Furthermore, the Florida team has been a pioneer in the implementation of downloading care plans to USB flash drives.
Read more about the success of Florida's Epilepsy Foundation team in an interview with Project Leader, Judy Clauser and Title V Director, Phyllis Sloyer.
Summary from a September 2009 Learning Session:
NICHQ Hosts Dynamic Learning Session to Improve the System of Care for Children and Youth with Special Health Care Needs
By: Carolyn Anderson
Project Director, NICHQ
In keeping with the collaborative credo that “everyone teaches and everyone learns,” six epilepsy teams, seven newborn hearing screening teams and eight Title V directors participating in the Improving Systems of Care (ISC) collaborative convened in St. Louis in mid-September for the second of three learning sessions. The overall aim of this NICHQ-led initiative is to improve the health and well being of Children and Youth with Special Health Care Needs (CYSHCN) and their families through building the capacity of state Title V programs—in concert with other state based partners—to create and sustain effective community based systems of care for this population. With instruction from Improvement Advisor Richard Scoville, and guidance from expert faculty, the thirteen teams spent two days perfecting their aims and project plans for their organizations, and sharing successes in achieving system improvement for children with epilepsy and with hearing loss.
Parents are integral members of every team. A highlight of the learning session was the parent panel discussion related to patient-provider communication issues. Parents frequently find themselves in the role of intermediary between primary care and specialty providers caring for their children. Three participating teams are testing changes to the referral system which are predicted to establish recommendations for best practices in communication.
While the Newborn Hearing Screening Teams are new to the collaborative, the Epilepsy Teams are participating for a second year. The Epilepsy Foundation of Florida (EFOF), under the leadership of Judy Clauser and with the support of Title V Director Phyllis Sloyer, was recently recognized for its outstanding efforts to impact the lives of children with epilepsy, when the National Epilepsy Foundation awarded them the Program of Excellence Award for its Project Access program. EFOF was presented with the award at the Foundation’s 6th Annual Leadership Conference in Boston on Sept. 12. The award was based on the program’s outstanding qualities and demonstration of the most creative work in the field. Congratulations Florida! Judy credits participation in the collaborative with exposing her to the Title V program. It was through a partnership with Florida Title V’s Children’s Medical Services that previously uninsured children with epilepsy were able to gain access to health insurance.
