Parents of children with a wide variety of chronic health conditions (N = 910) were surveyed about their use of health services, out-of-pocket expenses for health care and related items, and ratings of the importance of health and support services. The financial burden on this middle-class, insured sample was substantial, with about half indicating some out-of-pocket expenses for travel, parking fees, drugs and medication, bills after insurance payments, and doctor charges. The commonalities found in parents' reporting of important services needed support the use of a noncategorical approach to program planning and policy development for children with special health care needs.
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Walker et al. (1989) studied this question.