Care Coordination

What is care coordination? Here is an example: Sharon, a 6 year old with cerebral palsy, and her mom, Mrs. Smith, have an appointment with Dr. Dawson, Sharon's pediatrician. Sharon complains of stomach pain each Sunday evening and does not want to go to school the next day. Her cerebral palsy has caused a significant speech disorder, and a new augmentative communication device has been recommended by staff of the cerebral palsy clinic but hasn't arrived. She is a bright child who is used to full participation in her preschool classroom. The office care coordinator briefly reviews the family's questions for that visit and notes Mrs. Smith's frustration with the slowness of the school to make sure Sharon has an effective way to communicate. The care coordinator updates the care plan that is in the chart. Dr. Dawson reviews her care plan, and sees that Sharon has just started kindergarten and one of her transition goals was to have the new communication system for use in the classroom. During the clinical visit, Mrs. Smith and Dr. Dawson speculate that Sharon's anxiety about her inability to communicate in the classroom may be the cause of her Sunday evening stomach aches and resistance to attend her new school.

Contact information for the speech pathologist at the cerebral palsy clinic and at school are listed in Sharon's care plan. The office care coordinator contacts both speech pathologists to determine what has delayed the augmentative communication device. Mrs. Smith rechecks with her insurance company and schedules a meeting with the school's speech pathologist. School staff had been unaware of Sharon's abdominal pain and anxiety about school and implemented an interim communication program until the new device arrived.

Care Coordination is one of the cornerstones of chronic condition management and good primary care. It is more than knowing the names and contacts of providers that care for a child with special needs. Care Coordination is a process of care that requires a family partnership, use of specific tools and forms (such as care plans and care guidelines), an office team, and a system for efficient delivery of care within a busy practice. Care coordination as part of chronic condition management can enhance both the quality and efficiency of services.

What other care coordination services are available in your community? The Child Development and Rehabilitation Center (CDRC) supports 3 local programs that provide assistance with care coordination and related services. They are the CaCoon program (Care Coordination), the Community Connections Network and our Medical Home Resource Teams. Limited care coordination services may also be available through the Exceptional Needs Care Coordination (ENCC's) of your child's health plan.

Care managment is a broader concept than care coordination and includes supporting individuals and families in self-managment.  In the ICIC model, effectice self-managment is more than supporting the patient or following prescribed treatments.  It means making sure individuals and families have a central role in determining care (person and family centered practice).  It means providers and individuals and families work together to "define problems, set priorities, establish goals, create treatment plans and solve problems..." 

Some children and families will need support to develop competence in self-advocacy or the performance of specific care procedures. Building self-management skills is critical to the successful management of chronic health conditions. If your office does not have the resources to meet a family's needs, additional support is available from your county's CaCoon nurse. These nurses have had specific training in supporting families in improving self-advocacy skills and also can provide training in certain health procedures, for example, feeding infants with cleft lip and palate and performing clean intermittent catheterization.