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Children with Special Healthcare Needs

Meeting Families' Needs

Presenters:

Ruth Walden, Family Specialist, New York State Department of Health.

Beverly Crider, Family Centered Care Administrator, Children's Choice of Michigan.


Following the discussion on identification, Ruth Walden and Beverly Crider presented information on the important role of and special needs of the family in developing service care plans for children with special health care needs (CSHCN).

Ruth Walden, the mother of a child with special needs and a family advocate for the New York State Department of Health, emphasized the importance of developing effective and supportive systems of care for CSHCN and their families, the components of which could include:

  • Community-based care.
  • Medical homes.
  • Educational and vocational services.

The involvement of family advocates at the State level can assist in promoting and fostering supportive systems of care. In addition, family participation in the development of care plans is an effective way for families to become empowered to promote systems to change, and to improve those systems to best meet their needs.

Beverly Crider, also the mother of a child with disabilities, spoke from the perspective of a health plan administrator on how to best involve families in the process of care delivery. She highlighted three important ways in which families can have an impact:

  • The first is as planners and developers of care systems. In this situation, parents of CSHCN can work with the plans to represent the needs of the families.
  • The second major role for families is as trainers and educators for plan staff. In Michigan family members have been put onto contract-development teams to assist in the determination of staff requirements for education and training.
  • The third key role that families can play is as evaluators. Families can be part of advisory groups that monitor appeals and grievances and review reasons for disenrollment from the plans.

In Michigan families have been active in all of these roles, and important lessons have been learned from the State's innovative approach to family involvement, including:

  • The importance of receiving high-level administrative support from the plans for family involvement.
  • The importance of health plan staff training on how to work with the consumers.
  • The value of parent-to-parent support as a strategy that can work within the managed care setting.
  • The fact that care coordination for CSHCN is difficult, but families usually have the greatest understanding of the overall picture and the needs of the child.

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