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By some estimates, one child in three has some type of special health
care need. One child in twenty has a disability that substantially impairs
his or her ability to function in an age-appropriate manner. Families
and caregivers must rely on a staggering array of programs to secure health
care and other services. Guaranteeing that these services are accessible,
well-integrated, culturally appropriate and family-centered requires monumental
effort. The task is further complicated by alternative managed care systems,
changes in welfare eligibility, and extensive reorganization among health
and social service agencies.
HSR conducts
comprehensive population-based needs assessments of CSHCN and their families;
designs alternative mechanisms for integrating service delivery and financing
mechanisms; develops indicators for measuring quality of services delivered;
and assists state agencies in developing and implementing a systems-based
approach.
National
Policy Center for Children With Special Health Care Needs
HSR participates in managing the National
Policy Center for Children With Special Health Care Needs, which promotes
the development of comprehensive family-centered systems of care for CSHCN
and their families. The Center conducts policy research, develops and
disseminates information, and provides support and information to family
advocacy efforts. (www.jhsph.edu/centers/cshcn)
Along with
its partner organizations — the Department of Maternal and Child Health
at the Johns Hopkins University School of Hygiene and Public Health, and
Family Voices —HSR is:
- Analyzing
alternative risk-adjustment methodologies for financing the care of
children with special health care needs who are enrolled in managed
care,
- Studying
eight states' efforts to improve service integration under alternative
Medicaid managed care programs,
- Preparing
a technical resource brief on strategies for using managed care data
systems to monitor and enhance the quality of care provided to clients,
and
- Developing
a policy guide for parents and family advocacy leaders.
Under a grant
from the David and Lucile Packard Foundation's Center for the Future of
Children the Policy Center is conducting five in-depth state case studies
to examine the implications for Children with Special Health Care Needs
of SCHIP (State Children's Health Insurance Programs). The five case-study
states have adopted alternative SCHIP models and implemented a range of
innovative policies that hold promise to meet the needs of CSHCN and their
families.
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