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Employee Benefits Study of Children with Special Health Care Needs, a subcontract with the MassGeneral Hospital for Children under a grant from the Maternal and Child Health Bureau of the Health Resources and Services Administration

In collaboration with James Perrin, MD and Karen Kuhlthau, PhD at the Center for Child and Adolescent Health Policy at the MassGeneral Hospital for Children, the HDWG is participating in a project to explore how employers understand the needs of their employees who have children with special health care needs. The Maternal and Child Health Bureau funds this project.

The project arises from the work of a consortium including the Center for Child and Adolescent Health Policy at MassGeneral Hospital for Children; Family Voices at the Federation for Children with Special Needs; New England SERVE; and the Health and Disability Working Group at Boston University. The project mission is to carry out a study of how employee benefit directors and health care purchasers understand the needs of their employees who have children with special health care needs (CSHCN), in the context of employee benefits and supports. By employee benefits, we mean both health benefits and other benefits such as information, program enrollment, flexible schedules, and other work/family benefits. We seek to understand:

1. how current benefit structures help families with children with special health care needs,
2. how employers/purchasers currently view the needs of families caring for CSHCN, and
3. how employers/purchasers view opportunities for improvement.

To date, the project has conducted interviews with employers, parents and other stakeholders in four target cities (Boston, Miami, Cleveland, Seattle). Preliminary findings from that investigation were reviewed at a two-day key informant meeting in October 2003.

In the final stage of the project, findings and recommendations will be shared with selected employers in two implementation cities chosen from among the four cities studied, as the basis for a collaborative effort to implement identified best practices at a small number of firms. Findings and recommendations will also be shared with leaders of "Title V" programs – state public health programs to serve children with special health care needs – to ensure public sector support and collaboration with private efforts in this area.Project findings and recommendations will be shared with broader audiences (including human resource and related professional groups, parent organizations, and Title V programs nationally) through scientific and trade journals, mass media and targeted project reports.

HDWG Project Staff: Carol Tobias, Deborah Allen