Demography of family households.

A profile of the demography of individuals with mental retardation and related developmental disabilities (MR/DD) was developed from the Survey of Income and Program Participation, a national household survey. We estimated a total 1991 population of 2.97 million Americans with MR/DD, with 2.63 million living outside the formal long-term care system. Observations suggest that (a) families are the dominant form of support and, thus, a key constituency in disability policy; (b) a large cohort currently live in households headed by aging family members; and (c) there are significant economic disparities between subgroups of families, defined primarily along gender and racial lines.

Analysis of ethnic variations in developmental disability prevalence and household economic status.

Prevalence of developmental disabilities among the three largest U.S. racial and ethnic groups was estimated. Groups were compared on household economic status and access to welfare programs. Secondary analyses were conducted on 1990 and 1991 panels of the Survey of Income and Program Participation, a nationally representative data base of the demographic and economic status of U.S. households. Estimated prevalence rate was 1.1% (June through December 1991), with the highest rate (1.4%) among Blacks. Households with a family member with developmental disabilities had significantly lower income and greater dependence on means-tested income support. Minority status exacerbated differences in earned income and access to welfare. Results were discussed in the context of general U.S. demographic trends.

Predictors of BMI among adults with Down syndrome: the social context of health promotion.

The study explored the relationship of diet, exercise, disability status, and degree of social integration to Body Mass Index, an indicator of excess weight and health status. Subjects were adults with Down syndrome living at home with their families. Variables included a 110-item nutritional analysis and assessments of family demographics, severity of disability, and "lifestyle" variables, such as friendship and affiliation, access to recreation and social activity, and level of physical activity. A factor analysis reduced lifestyle variables into three distinct factors representing friendship, social opportunity, and physical competency. Factor scores were entered into a hierarchical regression model that compared the variance predicted by these factors to the variance accounted for by diet, exercise, and health and physical status variables. Although the overall regression was not statistically significant, the final block of predictors, which represented friendship and social opportunity effects, accounted for a significant increment in BMI variance. Thus, even after the effects of diet, exercise, and physical status variables were partitioned out, the lifestyle variables remained potent predictors of BMI. Study conclusions are described in the context of current paradigms of health in the field of mental retardation and their relationship to inclusion in the community.

Costs of family care for adults with mental retardation and related developmental disabilities.

"Out-of-pocket" spending by families supporting an adult family member with mental retardation or related developmental disability was characterized and estimated. Annualized nonreimbursed spending among a sample of 99 Chicago-area households was evaluated through survey and telephone interview across 10 categories of routine daily living expenses and disabilities-related services. The average annual out-of-pocket cost was $6,348. Average pre-tax income for the sample households was $37,657. Although wealthier households reported higher levels of spending, the percentage of household income represented by out-of-pocket costs increased significantly as family incomes decreased. Results were discussed in the context of families as a focus for service planning and public policy and the importance of the family to the nation's system of care.