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GIANT STEPS by Gilbert M. Gaul



Pub Date: Jan. 22nd, 1993
Publisher: St. Martin's

Two-time Pulitzer-winning journalist Gaul, who reports on medical economics and health policy for The Philadelphia Inquirer, brings his special skills to the story of his son Cary, born six years ago with spina bifida. Chronically disabled children like Cary require constant attention, countless visits to doctors and physical therapists, and frequent hospital stays (Gaul calculates that his son averaged at least one medical service every other day during the first year of his life). Here, details of these encounters and of the Gauls' continuing struggle to coordinate Cary's medical care are dexterously combined with the author's critiques of the health-insurance business and the medical establishment--both of which, he says, are geared to deal more with crisis situations than with chronic conditions. Managed health care, much touted by insurers, is, Gaul contends, not designed to provide the best-coordinated care for the patient but, rather, to control costs. Gaul concludes that disabled-children clinics, set up by many teaching hospitals in the 1970's so that a team of specialists could follow a child in a coordinated fashion, actually operate more for the training of inexperienced medical residents than for the care of children. As Cary grows and thrives, the Gauls tangle with yet another bureaucracy--an educational system that is ill-prepared to handle spins bifida children and their special physical problems and learning disabilities. Fortunately, Gaul knows how to get across his message about society's failings without ranting or whining. There are sorrow and regret here, but hope and love and courage too. An effective plea for changing how society deals with the chronically disabled, and an appealing story of parents struggling to do their beat for their disabled son.