Recorded presentation

Deborah Allen, ScD, School of Public Health/MCH, Boston University, 715 Albany Street, T5W, Boston, MA 02118-2526, 617-624-5070, dallen@bu.edu

This talk will introduce Objective 16.23 of Healthy People 2010, which calls for development of state “systems of care” for children with special health care needs (CSHCN) and their families (http://www.cdc.gov/nchs/hphome.htm). While focused on program and policy issues, 16.23 provides a framework for research as well. The talk will outline a research agenda based on that framework.

Two critical background steps for research were the 1998 publication of a consensus definition of “children with special health care needs” and delineation of six “outcomes” felt by stakeholders to comprise a “system of care.”). The definition made feasible a National Survey of Children with Special Health Care Needs conducted in 2000-2002, yielding state and national estimates of the CSHCN population, and insurance coverage and access to and quality of services on which the population relies. The six outcomes were incorporated into the President’s New Freedom Initiative http://www.hhs.gov/newfreedom/init.html

Those initial steps only begin to answer questions about this population, its make-up and distribution and service system experiences. Pressing questions address the impact of different strategies for operationalizing the definition; best ways to define and measure components of the six outcomes; and strategies for demonstrating effectiveness and cost-effectiveness of interventions aimed at achieving the 2010/New Freedom objectives. The National Survey and a range of state and local 2010 initiatives will provide data which can be used to address these questions. Beyond the most pressing studies lies a broad agenda concerned with policy options and their implications for access and quality for the CSHCN population.

Learning Objectives: