Caring Program: Care Coordination for Children with Special Health Care Needs

Highmark Blue Shield's Caring Foundation

Parents of children with special healthcare needs must very often negotiate a maze of services and several separate providers to ensure that their children receive appropriate care. This inefficient and uncoordinated system has enormous financial and emotional implications for the families and their communities, and is an issue for health insurers as well. The Caring Program addresses these problems through communication, coordination and collaboration among systems and empowers the children, their families and their healthcare providers with information, education and tools. Through home visits, team meetings and ongoing support, the Caring Program provides enhanced collaboration, effective and efficient use of time and resources and maximum quality of life for the children with special healthcare needs and those who care for them.

The program, which began in late 2004, was designed to provide community-based care coordination for children enrolled in Pennsylvania's Children's Health Insurance Program through Highmark. The program offers two levels of support:

Level 1, in which care coordinators provide families with information, education and referrals via telephone, e-mail or written correspondence, which the families then access themselves; and

Level 2, in which community-based care coordinators provide more tailored and personal assistance including meeting with the family in the home and potentially attending visits to doctors, school meetings and community meetings. With this level of support, the care coordinator and the family function as a team and create a care plan that the family may share with providers, educators and community agencies. Eligibility for enrollment in Level 1 or 2 is based on the child's diagnosis and other information.

The University of Pittsburgh Graduate School of Public Health and School of Nursing has evaluated the Caring Program. The results were extremely positive. The quality of life for children with special healthcare needs and their families was meaningfully improved in many areas, including fewer days of school missed and fewer problems with school, greater participation in extracurricular activities, a reduction in out-of-pocket expenses and a decrease in anxiety. In addition, the families experienced 50 percent fewer emergency department visits and inpatient hospitalizations related to the primary diagnosis, again saving money and time and reducing stress. The Caring Program's improved access to support and services has the potential to have a very positive effect on children and their families, not only in the present but over the long term as well.

Program Contact:  Amy Shannon, Care Coordination Consultant, 412.544.0768, amy.shannon@highmark.com