Chronically Ill and Disabled Children Need Better Support Systems

From 1995 to 1996, staff at Group Health Foundation (the funding and research arm of the Minneapolis-based nonprofit health system Group Health) examined existing services for care of children with chronic illnesses.

They also developed a set of recommendations for an alternative approach that would more effectively coordinate care for these children and focus on their families' needs.

Researchers interviewed parents of children with chronic illness as well as physicians at HealthPartners (a managed care organization based in Minneapolis). They also conducted financial analyses of health services for chronically ill children.

The project was part of the Robert Wood Johnson Foundation (RWJF) Chronic Care Initiatives in HMOs national program.

Key Findings

  • Researchers found the existing system of care for children with chronic illness to be stressful, cumbersome and time-consuming.

  • Not all necessary services were covered by the existing benefits package offered to parents.

Key Recommendations

  • Case managers should work with the physician to improve care and coordinate services.

  • Develop a flexible benefits package.

  • Institute special services to simplify claims and billing information.

  • Provide orientation for families.

    Expand service hours to help working families and to minimize loss of the child's time at school.

  • Promote mental health services to help families cope with stress.