Health Care Reform: What's in It for Children with Chronic Illness and Disability

By Palfrey, Judith S.; Samuels, Ronald C. et al. | Journal of School Health, August 1994 | Go to article overview

Health Care Reform: What's in It for Children with Chronic Illness and Disability


Palfrey, Judith S., Samuels, Ronald C., Haynie, Marilynn, Cammisa, M. Laurie, Journal of School Health


For children with chronic illness and disability, the current health care refor process holds both promise and uncertainty. By definition, these children require accessible and comprehensive health care. If health care reform accomplishes universal access to medical care, then an enormous financial burde will be lifted from the shoulders of families whose children have chronic illnesses and disabilities. Indeed, the elimination of preexisting conditions will free some parents from the constraints that have literally dictated their life choices. Families will have the security to move across state lines or change jobs without fear of losing precious health insurance coverage for their children.

Health care reform is likely to assure some form of "universal access" to medical care for all children. However, several crucial issues still remain to be tested. This article discusses the background and need for health care reform, then presents concerns that relate to children with chronic illness and disability, and ends by identifying areas in which further issues will be defined, but only over time.

WHY DO WE NEED HEALTH CARE REFORM?

In articulating the health care reform initiative, President William Clinton listed seven serious problems in the U.S. health care system.[1] Each of these has a direct affect on children with chronic illness and disability and their families.

1. "Americans lack security..." Despite the nation's superb medical care capability in the world, 8.4 million U.S. children younger than age 18 were without medical insurance in 1992[2] and as many as 16 million were uninsured for portions of the year.[3] When families lack insurance, their children make fewer health care visits.[4] This may mean they forego diagnostic assessments and surgical management that might prevent further deterioration and long-term disability.

2. "Health care costs are rising faster than other sectors of the economy..." I the United States, 1% to 2% of children have severe, chronic conditions[5,6] an an estimated 10% to 20% have a variety of disabilities that require increased levels of care from physicians, nurses, and social service and community agencies.[7] Increased care can be costly. In one study, for instance, children with chronic illness and disability had five times as many hospitalizations, three times as many physicians visits, and they used all types of health-care services 10 times as often as a control group of healthy children.[8] Stated another way, 5% of young people account for 40% of hospital days.[9] While thes figures indicate the significant costs of caring for this population, they also suggest a potential area of opportunity. Were the system of care for children with chronic illness and disability to be organized better, potential economies of scale might be identified and savings might be realized without eliminating needed services.

3. "Bureaucracy overwhelms consumers and health providers..." Nothing is simple about the current health care system. Benefits vary among health insurers. Medicaid among states varies dramatically. Prior authorization requirements sen families scurrying from provider to provider; and the multiplicity of inconsistent health insurance forms turns the physician's day into a bureaucratic nightmare.

Problems are compounded for families whose children have chronic illness and disability because so many different types of services are needed. Paperwork becomes a full-time job for many parents.[10] Furthermore, if the family change coverage, such as when starting a new job, they often must fill out innumerable new forms and learn a whole new system of referral regulations and billing requirements.

4. "Quality is uneven..." In 1987, the Society for Behavioral Pediatrics published standards for the care of children with chronic illness and disability.[11] They included a comprehensive approach to the range of biopsychosocial consequences of chronic illness and disability. …

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