Medicaid Managed Care - U.S. Senate Special Committee on Aging

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their children and to participate in substantive ways in program and policy development as
managed care products are designed and implemented.
To this end, in October of 1995, Family Voices began a one-year project, funded
through the Annie E. Casey Foundation, that included surveying members of families with
children with special health needs in four selected cities: Atlanta, Denver, Des Moines,
and Seattle about their experiences with their health plan.
Survey Design
The survey was designed as a tool to give feedback to the health care system from
families of children with special health needs and to inform program and policy makers
about families' perspectives in this time of rapid change. We wanted to gather information
from families with children in both managed care and non managed care plans in order to
establish a baseline of information about children with special health needs and how
families view these children's health coverage.
In the Spring of 1995 Family Voices developed and distzibuted a draft
questionnaire at an annual national training conference. This pilot asked questions which
reflected the numerous concerns Family Voices staff were hearing from families across the
country about their children's health care coverage. The survey was completed by 43
Family Voices State Coordinators, recognized family leaders. The family responses
provided interesting information from a small number of families about how health plans
were addressing the needs of children with special health needs. Insight gained from that
pilot helped to shape the questionnaire used in the Casey study.
Family Voices worked in cooperation with New England Serve to develop a joint
questionnaire to tbeused by both groups. This second questionnaire was designed to
gather information from families regarding their child with special needs' use of health
services and their satisfaction with 52 specific health services and delivery characteristics
of their child's health plan. Children with special needs were broadly defined for this study
as children who had health needs greater than those of normal children of a similar age.
Questions were asked about their limitations of physical function, activities of daily living
or social role in comparison to their age peers, as welt-their needs for special health
services. Demographic information including race, socio-economic status and education
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