Citizens and Health Care. Participation and Planning for by Barry Checkoway

By Barry Checkoway

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1973. The Semisovereign People. 1975. An Inventory of Analytical Pluralist Unpublished monograph. University of Political Organizations. New York: Basic 3 Participation is not Enough Dorothy Ellenburg This c h a p t e r r e p r e s e n t s one consumer's perspective on the health planning program t h a t was initiated by the National Health Planning and Resources Development Act of 1974. It is written from the point of view of an advocate for people especially t h e disadvantaged - with substantial health p r o b lems· It is based on a decade of work, accomplishments, and defeats that were shared with people active in community work on behalf of minorities, the geographically isolated, the catastrophically and t h e chronically ill, and t h e handicapped.

Representatives generated little community interest or support. They tended to be ineffective advocates. The evidence from HS As that have held elections is strikingly similar - low turnout at the polls and high turnover among representatives. Representatives are uncertain of their task and their constituency. Furthermore, direct elections have facilitated the takeover of entire boards by single organizations. In Northeastern Illinois, for example, abortion foes captured the HSA, linking every health concern to their own preoccupation; in Illinois, Arkansas, and Massachusetts, provider institutions chartered buses and flooded the polling REPRESENTING CONSUMER INTERESTS 45 places with hospital workers who voted for docile consumer r e p r e s e n t a t i v e s (Checkoway 1979; Kleiman 1979).

The character of consumer involvement in HSAs is contingent on the answers to t h e s e general questions. Indeed many of the difficulties that plague the health planning act follow from a failure to consider most of them. We consider these questions in this section t h r o u g h discussion of t h r e e topics: t h e distinction between participation and r e p r e s e n t a t i o n , several conceptions of r e p r e s e n t a t i o n , and implications for democratic accountability. Participation Originally, self-government meant direct citizen participation in public decisions.

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