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
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