functioning vary significantly among children and may change over time with the developmental course of the illness.

I tried my best to do everything to have a healthy baby. I did not drink. I did not smoke. I took vitamins. I took prenatal exercise classes. The doctor assured me that I did nothing wrong, that these things just happen. We are grateful that Courtney is now stable. However, as long as she is on this earth she will continue to have medical needs. She takes several cardiac medicines in the hope of keeping her from going into congestive heart failure. Her heart cannot sustain very much stress, and she must be constantly monitored.

Karen LaPlante

Parent, Dublin, VA

Public Workshop, June 2, 1997

In general, however, appropriately designed early interventions and disease management strategies can help to improve a child's ability to function, can slow the progression of illness, and often can decrease the long-term costs associated with the condition (Neff and Anderson, 1995). Access to these interventions depends in large part on the structure of the child's health insurance benefit package and on the availability of services and providers in a community. Traditionally, more of the case management services and other expanded approaches have been more likely to be financed by the public sector than by private insurers and health plans (IOM, 1997a).

Whether it is children or adults, I don't think we have reached a national agreement on what we do for someone with a very expensive illness. When you pick up tomorrow morning's Washington Post Health Section, it will predictably have some story on a very expensive, new, beneficial treatment, and nobody is willing to say what they are going to ante up for that.

James Bentley

American Hospital Association, Washington, DC

Public Workshop, June 2, 1997

Traditional indemnity insurance coverage typically has very limited coverage of the supportive or supplemental therapies (speech, physical, etc.) required for children with severe chronic disease. Most managed care plans provide a core set of preventive and primary care benefits for children, but they differ in the extent to which specialty pediatric services are covered (McManus, 1998).

In recent years, health plans have begun to implement programs specifically for children with special health care needs, often in partnership with public health clinics (AAHP, 1997). Current initiatives include:

  • The Blue Cross and Blue Shield Association working in partnership with the National Cancer Institute to refer children to nationally recognized treatment centers after being diagnosed with cancer;

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