National Consumer Voice for Quality Long-Term Care

ABSTRACTNursing homes in the United States have for over 40-years been riddled with evidence of poor performance. To combat problems in this industry, state and federal governments developed an elaborate monitoring and regulatory structure. At the same time, an important citizens' movement involving nursing-home consumer advocacy groups (CAGs) came to life. This paper presents the results of a postal survey of 47 active nursing-home consumer advocacy groups. They indicate that the majority of these organisations were started by an individual dissatisfied with the care provided to a family member. The political arena in which these organisations were most active was State legislatures. Though they varied considerably, the average CAG operated on a thin financial margin, largely supported by member contributions and donations. These organisations defined their success in terms of their ability to generate policy changes at the State level. Unfortunately, as they pursued these changes, they often failed to develop the organisational infrastructure necessary to assure the CAGs' continued operation. When CAGs ceased operations, it was in most cases the loss of the organisation's original leader or the cumulative effects of the constant struggle to maintain adequate financial resources.

The debate about health care reform is under way, and for that we should all be grateful. There is little question that reform is needed to control costs, ensure access for the tens of millions of Americans who have no health coverage, and improve the quality and consistency of the care delivered. What we need to guard against as the debate develops is the tendency, already in evidence, for the proponents of various plans and approaches to emphasize the points on which they disagree.Two years ago, an exceedingly diverse group of organizations — businesses in all sorts of industries, . . .