DISABLED CHILDREN: CARE, COMPASSION, CHARITY, COSTS CONTEMPORARY concerns about medical care appear to be dominated by words that begin with ‘C’. I think it all began with the former U.S. Secretary of Health, Joseph Califano, who was alarmed by the new technology and its costs-the CAT scan. Shortly after that, the entertainment industry latched onto the rhapsody of the ‘C’ in the production of the long-running London musical ‘Cats’. Since those good old days, we have continued to read and hear more about the need for compassion and charity by those who fulfill the needs of the sick and disabled. Concomitant with these words is usually the admonition that the costs must be contained, and if not, controlled. Traditionally, the appeals for funds were framed in the now discarded term of the ‘crippled’ child, who deserves our charity, which with some justification could be merely the giving of our leftovers. The care of children at below-cost reinbursement for professional and institutional care by state programs may be construed as charity, However, charity can have its ‘seamy’ side.’ To stay solvent, these providers have shifted the costs by higher charges for the private paying patient in the middle- and upper-income classes. Now the murmuring of these groups (not just Americans, but in most developed countries) has become a chorus chanting that ‘health care’ has become too expensive. It consumes too much of the gross national product (in America, 11 * 1 per cent’). When one looks at the California data on incidence of disease and disabilities in children, it should be evident that the costs of care will not decrease. The 1989-1990 data on charges to the California Children’s Services-a State-Federal program which underwrites medical, paramedical and hospital care for all children-may be useful. These data from California, with its population of

d

“1

almost 30 million and said to be the seventh or eighth largest nation in the world in terms of gross national product, may, as a particular, allow generalizations about contemporary costs in developed countries’. Useful because, in contrast to our frame of reference to remembered times past when medical care was cheaper, we now have more effective treatments, with their inevitable costs. For example, of the $117.8 million billed for treatment services, $35.5 million was for

institutional treatment. Of this amount, malignant neoplasms accounted for $5 2 million. 25 years ago the survival rate for osteosarcoma was at most 20 per cent, compared with nearly 60 per cent today, and cure rates for leukemia are similar.

189

-0

..-6

-

‘(3

w

We can’t have prevention of recurrent bleeding in hemophilia by free factor V I I I at no increase in costs. Should we eliminate the bills of $3.8 million for the dramatic advance in the treatment of children’s congenital heart-defects and turn the clock back 50 years? Simultaneously in California we continued to care for 12i150 children who have cerebral palsy under the age of 20 years. However, the institutional charges were only $715,970, exclusive of the free physical and occupational therapy in special treatment units. So it seems that in the funds allocated for disabled children is another ‘C’ word, competition. Competition for funds is evident in only a partial list of examples: heart transplants and coronary by-passes, AIDS, Alzheimer’s disease, breast cancer, liver and lung transplants3. Where do disabled children fit into this competition for funds? One must notice that in emerging countries-despite a host of disabled children, the spread of private charities for the care of children and the efforts of UNICEF to improve the status of child health-coronary by-passes, total joint replacements and sports medicine have captured center stage and money allocations in medical care4. As explained to me in India by a sage observer, it is treatment of middle- and upper-class adult disease that gets the press releases and the funds. We adults all want to continue to live and function at maximum efficiency and comfort: obviously, nothing is wrong with this perspective. But if we are to promote the care of children with developmental disabilities, then medical professionals need to highlight the realities of allocation of funds in the current rhetoric and debate about costs, charges and that other ‘C’ word, control.

EUGENEE. BLECK I . U. S. Bureau of thecensus (1990)SIafis1icalAbsiructofiheLlniledSioies(ll0th Edition). Washington, DC: U.S. Government Printing Office. 2. California Children’s Service, Fiscal Year 1989-1900, Tables 11, 12, 13. Sacramento, CA: Department of Public Health. 3. Wachter, R . M. (1992) ‘AIDS, activism, and politics of health.’ New England Joumd of Medicine, 236, 128-132. 4. Grant, J . P. (1992) The Slate of the World’s Children. Oxford: Oxford University Press (for UNICEF).

190