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(Doc. #1) In the American Journal on Mental Retardation (1996, Vol. 101, No.1, 26-40), David Strauss (PhD,
Professor, University of California at Riverside, Fellow of the American Statistical Association) and
Theodore A. Kastner (MD, Morristown Memorial Hospital, Moristown, N.J.) reported that when they
compared risk-adjusted mortality rates of people with mental retardation in institutions and the community
in California from 1980 through 1992, risk-adjusted odds on mortality in were estimated to be 72% higher in
the community than in institutions.
(Doc. #2) When it was suggested that the preceding research would be biased in favour of institutions,
David Strauss and Robert Shavelle (PhD, Visiting Professor, Department of Statistics, University of
California at Riverside) reported in a letter to the American Journal of Public Health that they tested for the
possibility of such a bias and that their findings did not support the hypothesis that the methodology
favors the institutions. On the contrary, they suggest that the 72% higher community mortality found by
Strauss and Kastner may, in fact, underestimate the excess of avoidable deaths.
(Doc. #3) Building on the previous work of Strauss and Kastner reported in 1996, David Strauss, Theodore
A. Kastner and Robert Shavelle compared risk factor-adjusted mortality for California adults with
developmental disabilities based on 22,576 adults receiving services in California in 1985-1994. Risk
factor-adjusted mortality was 72% higher in community care than in institutions, suggesting that community
settings may be less effective in preventing mortality in this population.
(Doc. #4) Following is an excerpt from an article titled “What Can We Learn From the California Mortality
Studies” written by David Strauss and Robert Shavelle in the October 1998 edition of Mental Retardation
magazine:
We are not aware of any state-sponsored peer-reviewed research of health issues. Although the peer-
review process does not guarantee independent or high quality research, studies that have not passed
peer-review should be viewed with skepticism (Angell, 1996). Further, few states even keep records that
could serve as the basis of such studies (Zaharia & O’Brien, 1997) This is disturbing, and one questions
why it has been permitted. Responsible policymaking is hardly possible without solid studies based on
good information.
Different people will draw different conclusions from the California mortality studies. We fear that the
lesson for many administrators will be to refrain from keeping records that do exist. In our view, however,
the main conclusion it this: When policymakers and advocates assure us that their programs are working
just fine, they should be asked: Where are your data? Where are your peer-reviewed studies?
The preceding article contains the following extract from a 1993 report of a Congressional subcommittee
investigating community programs in California and other states:
An area of increasing healthcare quality and cost-containment concern, however, is the long-term
treatment of the mentally retarded and developmentally disabled. Increasingly, millions of Americans with
these lif-long handicaps are at risk from poor quality care, questionable and even criminal management
practices by service providers, and lackluster monitoring by public health and welfare agencies…. A
disturbing pattern of abuse, neglect and fiscal mismanagement has emerged. (U.S. House of
Representatives, 1993)
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