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

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II. FAMILY PARTICIPATION IN MANAGED CARE
A. Problem Statement
Over the past twenty years, policymakers. pediatric providers, and families have
worked diligently to put the family at the center of care for children with special health care
needs and to build family/professional partnerships. Families are concerned as they transition
into new managed care arrangements that purchasers and plan administrators may not
recognize the important role that they can play in care planning, quality assessment, and policy
development. Without strong consumer input from families whose children have special health
needs, managed care benefit packages, service authorization rules, quality performance
measures, network development, and most importantly, provision of health care services, may
wrongly assume that one-size fits all children.
While most managed care plans now seek some type of consumer feedback, generally
the information gathered does not reflect the particular needs and concerns of children with
special health care needs and their families, particularly those from diverse cultural and
economic backgrounds. Also, information and education about selecting and using managed
care services seldom address the unique issues and concerns of these families. Generic family
information and education materials often say little about issues such as care coordination.
access to specialty care, appeals processes, dispute resolution policies, family support services,
and coordination with other community services. Finally, plan policies and procedures often
ignore the specialized needs of this population of children and families. Using parents as
liaisons with plan providers is not common and parent support activities are seldom included in
plans. In addition, particular issues for children with special health care needs are not
adequately represented in planning and decisionmaking. Just as public programs have become
more responsive to families and more culturally competent due to consumer input, managed
care organizations need the same input and education.
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