Study finds death rate for the developmentally disabled is
72 percent higher in community care than in developmental centers

This is the conclusion of a new study to be published in a national professional journal. Although the study does not attempt to discover reasons for the difference in mortality rates, it does point to the well-documented problems in getting adequate health care in community settings.

It also does not conclude that care in an institution is necessarily better in general than in the community. But it does say that the disabled individuals (or their family members) should be allowed to choose care settings after being informed of the benefits and risks.

Death rates are important, the study says, because "mortality is generally considered a useful proxy measure of quality of care in studying health care outcomes for large groups." In other words, when one group of people lives longer than another comparable group, it tends to indicate better health care.

The study, titled Comparative Mortality of People with Developmental Disabilities in Institutions and the Community, is scheduled for publication soon in the American Journal on Mental Retardation. It was written by David Strauss, Ph.D., director of the Statistical Consulting Center at UC Riverside, and Dr. Theodore A. Kastner, medical director of Morriston Memorial Hospital in Morristown, New Jersey.

They evaluated information about 18,362 adults with developmental disabilities, aged 40 or over, who received services from the California Department of Developmental Services between January 1980 and December 1992.

The study compared death rates among eight groups with the same characteristics such as age, level of disability and sex. The group with the lowest risk of death included those in their early forties with optimal mobility and self-care skills. The highest-risk group were those who were tube-fed, immobile and 90 years old.

The information came from the vast DDS database of CDERs (Client Development Evaluation Reports) and from the California Bureau of Vital Statistics.

The report says "the study's major finding was that the risk-adjusted mortality rates of people with developmental disabilities were higher in the community than in institutions, regardless of the level of risk...Risk-adjusted odds on mortality were found to be 72 percent higher in the community than in institutions."

To put it another way, by accounting for differences caused by age, sex and level of disability, there were still 72 percent more deaths in the community than in the developmental centers.

"This study does not offer an explanation for the findings," the report states. "Possible causes of increased mortality in community settings can only be inferred from other sources in the field. However, a significant body of literature exists.

"Health care in the community is generally considered to be a problem for persons with developmental disabilities. Shortcomings have been noted regarding Medicaid reimbursement, the lack of trained practitioners, and the coordination of care."

On the other hand, the report says institutions "offer a centralized setting in which provider training, reimbursement, record-keeping and quality assurance functions are in place."

The report notes that "normalization and an emphasis on least restrictive care settings have significantly affected the service system for persons with developmental disabilities.

Studies show that "there is an ever-increasing business of contracting with private organizations for services previously provided by the state. In these instances, there may be less state oversight and thus less public input into the quality and appropriateness of services provided.

"This study does not allow us to conclude that either institutional care or community-based care is superior. Each service system offers strengths and weaknesses with potential risks and benefits. The individual need of persons with mental retardation vary greatly, and for some individuals care in one setting may be more desirable than in the other." The report concludes with several recommendations, including these: