Abstract
More than 2,000 persons with developmental disability trans ferred from California institutions into community care during 1993 to early 1996. Using data on 1,878 children and adults moved between April 1, 1993 and March 5, 1996, Strauss, Shavelle, Baumeister and Anderson (1998) found a corresponding increase in mortality rates by comparison with those who stayed behind. Shavelle and Strauss (1999) updated the study through 1996 and found similar results. The present study is a further update through 1999. There were 81 deaths, a 47% increase in risk-adjusted mor tality over that expected in institutions (p < 0.01). As in the two previous studies, we found that persons transferred later were at higher risk than those moving earlier, even after adjustment for differences in risk profiles. The difference cannot be explained by the short-term effects of the transfer, and therefore appear to reflect an increased mortality rate associated with the less intensive medical care and supervision available in the community.
Highlights
Budgetary constraints in the United States in general, and California in particular, have forced a re-examination of policies for caring for the developmentally disabled
Number of deaths Total person-years Mortality rateb at riska
1995/6 moverse aBased on data on all persons residing in state institutions at any time between January 1, 1987 and December 31, 1993. bExpected number of deaths (x 1,000) based on the Poisson model, divided by the number of person-years at risk. cThe ratio of the observed number of deaths to the expected number based on the Poisson model. dComputed as standardized mortality ratio (SMR)+1.96· (SMR/E)0.5, where E is the expected number of deaths (Kahn and Sempos, 1989, p.101). eBecause there were only 7 deaths to the group who moved in early 1996, this group was combined with the 1995 movers. ∗Significantly different from 1.0 at p < 0.05. ∗∗Significantly different from 1.0 at p < 0.01
Summary
Budgetary constraints in the United States in general, and California in particular, have forced a re-examination of policies for caring for the developmentally disabled. Many states in the U.S have waiting lists for services, and only limited offerings once service is established. California is unique in that care for the developmentally disabled is an entitlement, mandated by the Lanterman Developmental Disabilities Services Act of 1969. The Act guarantees people with developmental disabilities the right to the services and supports they need to live like people without disabilities (Department of Developmental Services, 2001). A developmental disability is defined by the State of California as a condition arising prior to age 18, which is permanent and will affect the child’s ability to care for himself/herself.
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