“When a child sustains a traumatic brain injury, healing is often a long journey,” says Martha Dennler, Project Manager for the Arizona Governor’s Council on Spinal and Head Injuries. “Treatment often begins with acute care – but after that, the journey gets complicated.”

For many families, the healing process involves a lengthy – and sometimes overwhelming – array of service providers and treatment settings. And in some cases, “children may fall between the cracks and get no treatment or inappropriate treatment,” says Dennler.

To address the problem in Maricopa County, Dennler is coordinating the Maricopa County Continuum of Care (MC3) project. The project is an outgrowth of the Arizona Kids with TBI Demonstration Project, which was initiated in 1997.

That project engaged community members and professionals in Flagstaff and Tucson to identify community resources as well as gaps in service in order to develop a coordinated continuum of care.

The demonstration project terminated in 2001, and its success was recognized with the Governor’s Spirit of Excellence Award.

“Because of the pilot project’s success, we are committed to replicating this process in other areas of the state,” says Dennler. Through a collaboration with the Arizona Department of Health Services, Office for Children with Special Health Care Needs (OCSHCN) and with additional support from the BHHS Legacy Foundation, the Council began work in Maricopa County in December 2003.

The project has involved consumers, family members, EMT personnel, fire and police departments, educators, and representatives of hospital systems, health departments, home health agencies and governmental agencies.

Phase I of the project established a protocol for identifying TBI resources, as well as service system issues and positive aspects of the system. By applying the protocol in the East Valley area, the project identified and documented resources, strengths, concerns, and potential solutions for ensuring development of a complete continuum of care.

Similar processes were undertaken in the North Valley, and are currently underway in the Central Valley area of the county.

The project has also contributed to increased awareness of TBI among a wide variety of professionals. “We’ve supported the Mesa Public School District in incorporating TBI issues into training for school psychologists and school nurses,” says Dennler. “We’ve also supported Banner Health Systems in incorporating TBI in training for EMTs and fire departments.”

Other outgrowths of the project include discussions with the Arizona Chapter of the American Academy of Pediatrics and the Town of Glendale.

The project will continue through April 2005. In the coming months, participants will continue to focus on resource issues, document the lessons learned through the project, and develop a plan for sustaining the improvements made in service delivery.

“Our goal has been to document the family’s journey from point of injury, through acute care, to rehabilitation, and community integration,” says Dennler. “We’ve learned a lot along the way, but we still have work to do. We’re looking forward to sharing our findings and working with our partners around the state to continue to enhance the continuum of care.”