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Parents of children with complex medical needs encounter numerous obstacles to getting their children the health care and services they need. Many spend upwards of ten hours every week coordinating care across dozens of specialists, teachers, and social service agencies – and describe this time as frustrating, exhausting, and often demoralizing.
The Center for Advancing Interprofessional Practice, Education & Research (CAIPER) is participating in a state-wide initiative to change this. The project, Take Action for Children through Care Coordination, has brought together parents and key stakeholders in serving children with special health care needs to identify ways to support parents and improve coordination of services. Initiated by a team of expert practitioners from Phoenix Children’s Hospital and faculty from ASU’s College of Nursing & Health Innovation (CONHI), the Action Coalition has spent the last year collecting information about Arizona’s care coordination services for children with special needs. They were awarded a two-year Patient-Centered Outcomes Research Institute (PCORI) Engagement Award in August 2016 to convene parents and multi-stakeholder workshops in Phoenix, Yuma, Flagstaff and Tucson. Funding activities will lead to identification and subsequent testing of new strategies to improve communication and coordination across parents and interprofessional teams and service providers across Arizona.
The PCORI Engagement Award is led by Dr. Elizabeth Reifsnider, Associate Dean for Research at the College of Nursing and Health Innovation. Dr. Reifsnider is joined on the award team by Ms. Dawn Bailey, representing parents of children with special health needs, Dr. Wendy Bernataviciusand Dr. Grace Caputo from Phoenix Children’s Hospital, Dr. Anne Marie Lyles, CONHI faculty, Dr. Bradley Doebbeling, ASU College of Health Solutions faculty and Dr. Gerri Lamb, CAIPER director. State-wide partners in the award include Yuma Regional Medical Center, North Country Healthcare in Flagstaff, the University of Arizona, Ryan House, the Arizona Chapter of the American Academy of Pediatrics, Raising Special Kids, Phoenix Forward, Arizona Medicaid Mercy Care, Arizona Department of Health Services, and Arizona Department of Economic Security.