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Changes in health, functional abilities, and behavior problems among 150 adults with Down syndrome and 240 adults with mental retardation due to other causes were examined with seven assessments over a 9-year period. Adults were primarily younger than 40, the age at which declines begin to be evident in individuals with Down syndrome. Adults with Down syndrome were advantaged in their functional abilities and lack of behavior problems, comparable in health, and exhibited comparable rates of change on these measures as adults with mental retardation due to other causes. Placement out of the parental home and parental death were predictors of change in health, functional abilities, and behavior problems.

In this study, we investigate peer relationships and participation in social and recreational activities among 235 adolescents and adults with autism who live at home. The prevalence of having friendships, peer relationships, and participating in social and recreational activities were all low and comparable to previous research. Both individual and environmental factors were investigated as predictors of having peer relationships and participation in social and recreational activities. Having peer relationships was predicted by individual characteristics (younger age, and less impairment in social interaction skills), but not by characteristics of the environment. Greater participation in social and recreational activities was predicted by characteristics of the individual with autism (greater functional independence, less impairment in social interaction skills, higher levels of internalizing behaviors) and characteristics of the environment (greater maternal participation in social and recreational activities, greater number of services received, and inclusion in integrated settings while in school).

This article broadens our knowledge about family caregiving across the life course by examining caregiving and employment effects experienced by women with children with special needs, using data from a survey conducted in 1998-1999. Almost one fifth of the mothers provide at least 20 hours a week of home health care to these children. More than half of the mothers in the labor force report an employment effect in the form of reducing their hours, and more than half of the mothers at home full-time report ceasing paid employment due to their children's needs. Experiencing these effects was most strongly associated with the child's health characteristics. The caregiving provided by mothers of children with special needs occurs at a formative stage of their lives and may be intense and of long duration. These mothers' experiences should be included in the current research and theories about family caregiving across the life course.

This paper examines methodological challenges inherent in conducting research on families of children with autism and in comparing these families with others who are coping with different types of disabilities or who have nondisabled children. Although most comparative research has contrasted families whose child has autism with those whose child has Down syndrome, the range of comparison groups can be expanded to offer additional points of contrast and control. We discuss both matching and statistical control procedures and point to next steps in this line of comparative autism family research.

Differences in depression between Puerto Rican and non-Latina White mothers providing care to their adult child with mental retardation were examined. The focus of this study is on how family problems may mediate the effect of the adult's behavior problems on the mother's level of depressive symptoms and how this process differs across the two groups of mothers. As hypothesized, family problems was a stronger predictor of depressive symptoms for Puerto Rican mothers than for non-Latina White mothers. In addition, Puerto Rican mothers were in poorer physical health, which further accounted for differences in depression between the two groups.

This study examined the occurrence and stability of behavior problems over a 6-year period among 193 adults with mental retardation who lived with their mothers. Group level stability of behavior problems and individual level change were observed, as were bi-directional relations between behavior problems and maternal well-being. (Contains references.) (Author/DB)

Analysis of a national survey indicates that more than a third of children with autism, a fifth with mental retardation, and a fifth with other types of special health care needs had problems obtaining needed care from specialty doctors in the preceding year. The most common problems included getting referrals and finding providers with appropriate training. (Contains references.) (Author/DB)

This paper describes development of a study that includes participatory action research, specifically the establishment of a family advisory committee. The study involved a survey of Massachusetts families of children with disabilities. Suggestions for establishing and integrating the committee into the research enterprise are offered, as are results from interviews with committee members and researchers. (Contains 5 references.) (DB)

Examined relation between intensity, duration, and comprehensiveness of early intervention and changes in parenting stress, social support, and family cohesion. Found that mothers of children without motor impairment reported greater increases in family cohesion than mothers of children with motor impairment. Service intensity and comprehensiveness predicted significant increases in social support levels. Early intervention did not affect parenting stress. (Author/KB)

A study examined stress and coping processes among 133 married mothers and fathers of adults with mental retardation. Mothers used significantly more problem-focused coping strategies. Unlike fathers, mothers' use of problem-focused coping strategies and lower use of emotion-focused coping buffered the impact of caregiving stress on their psychological well-being. (Author/CR)

The congruence between mothers' and teachers' ratings of master motivation among 81 children (age 3) with mental retardation was investigated. Mothers rated children's task persistence behaviors higher than did teachers, and maternal ratings of the child's master behaviors were predictive of the child's task mastery performance two years later. (Author/CR)

As part of a longitudinal study of families with an adult son/daughter with mental retardation living in the home, 329 families were surveyed regarding the current involvement and future caregiving plans of adult siblings. Factors differentiating siblings intending to co-reside (36 percent) with the retarded sibling or intending to live apart (64 percent) were identified. (DB)

This study of parents of 121 toddlers with disabilities found that fathers reported more stress related to their child's temperament and the father-child relationship, while mothers reported more stress from the personal consequences of parenting. Fathers were more sensitive to effects of the family environment, whereas mothers were more affected by personal support networks. (Author/JDD)

This study of 150 mothers of infants and toddlers with disabilities found that participants in professionally organized parent groups reported larger increases in the size and helpfulness of their social support networks than did nonparticipants. Intensity of participation was associated with both positive and negative outcomes for maternal functioning and social support. (Author/JDD)

The social support networks of 418 adults with mental retardation who live at home were found to be large, durable, active, and diverse in their composition. Family members predominated as members. Males and those with the most severe mental retardation were found to be at risk for social isolation. (Author/JDD)

This article describes conceptual and statistical issues in three approaches to the measurement of change in early intervention programs: change scores, indexes of change, and residual change scores. Advantages and limitations of each approach are reviewed. Problems with the reliability of change scores are highlighted. Criteria for selecting among analysis strategies are identified. (Author/DB)

The article discusses the conceptual and procedural mandates of the Individualized Family Service Plan (IFSP), required under Public Law 99-457, as both a bold radical step taken by the federal government and as a logical extension of current service delivery practices serving disabled children. (Author/DB)

This article investigates the effects of the quality of the relationship between maternal caregivers and their adult child with disabilities on maternal well-being and whether this effect is mediated by dispositional optimism. Mothers caring for an adult child with Down syndrome (n = 126), schizophrenia (n = 292), or autism (n = 102) were surveyed. Mothers of adults with schizophrenia and autism had better psychological well-being when the mother/adult child relationship was positive, but this effect was mediated totally or partially by optimism. For all 3 groups, optimism was related to better mental and physical health. The findings highlight the importance of dispositional optimism, a psychological resource that has been virtually ignored in studies of family caregivers of adults with disabilities.

The increasing ethnic diversity in the U.S. population raises important challenges for community service systems. Little is known about the extent to which service systems meet the needs of different communities of color. This paper examines service utilization and unmet needs of Puerto Rican adults with intellectual disabilities (ID) in comparison to non-Latino white adults with ID to understand better the experiences of midlife and aging families from diverse backgrounds who have entered the service system. In addition, we examine the relationship of maternal support groups to service utilization and unmet service needs. We hypothesize that support groups would be an important resource for Puerto Rican mothers of adults with ID in facilitating greater use of formal services and decreasing the level of unmet service needs for their son or daughter with ID. Findings indicate that Puerto Rican adults with ID in this study had more severe impairments, received a comparable number of services, and had higher unmet service needs than non-Latino white adults with ID. In the multivariate analysis we examined factors that contribute to service utilization and unmet need for each group. We found that maternal support group participation was a significant predictor of greater service utilization and lower unmet need for Puerto Rican adults with ID, but not for non-Latino whites. These findings suggest that offering caregiver support groups may be a culturally relevant way for service systems to reach out to Puerto Rican families.

This commentary on EC 605 926 cites a study which yielded a dramatic difference in expenditures of families of children with mental retardation. The paper expresses concerns with reclassifying family supports as health care costs, and proposes alternative policy options for compensating families caring for a family member with mental retardation. (JDD)

This comment on EC 231 901 notes that institution-based and community-based residential programs for mentally retarded persons have not been proven to be programmatically equivalent; promoting large institutions as safer than smaller facilities ignores the deplorable history of abuse within institutional services; and institutions cannot assure residents' lifelong security. (JDD)

A study of the mental states of 105 aging mothers of adults with mental illness and 389 mothers of mentally retarded adults revealed the former sample to be more susceptible to fits of depression. Caregiving demands and offspring's behavior problems directly influenced the nature of depression in mothers of mentally ill and retarded adults respectively.

Current residential placement of 761 mentally retarded children in institutions during the late 1970s was described, and differences between children in institutions, in community settings, or with natural families were analyzed. Results indicated that the majority remained in institutions, and of those released, very few were placed in their natural home. (Author/CL)

Data from the Massachusetts Service Coordination Battery were analyzed for institutionalized (N=406) and community-based (N=124) mentally retarded adults and for institutionalized (N=460) and community-based (N=95) mentally retarded older adults to determine differences in cognitive, medical, and functional impairment; service needs; and utilization. Differences were observed only in service needs and utilization. (Author/CB)

Data collected on the informal support networks of 49 aging persons with mental retardation indicated that persons living with family had significantly smaller support networks (composed primarily of family members), while those living in community residences or institutions had informal support networks composed equally of family, friends, and professionals. (JW)

Predictors of 4 indices of well-being (physical health, life satisfaction, burden, and parenting stress) were examined among 203 aging mothers of mentally retarded adults living at home. Predictive variables examined include maternal characteristics, retarded adult's characteristics, family social climate, mother's social support network, and formal supports. (Author/JDD)

As hypothesized, placement of mentally retarded adult workers into competitive employment was predicted by participant's work behavior and job skills, ability to meet job requirements, and the presence of reinforcements within the employment setting. (CL)