The focus of my research is on the life course impacts of disability on the family. I am interested in how lifelong caregiving affects the well-being of parents and siblings of individuals with disabilities, including autism, Down syndrome, and schizophrenia. In addition, I have studied how the family environment affects the development of individuals with disabilities.

My research has been funded by the National Institute on Aging since 1990. With this support, we have conducted three lines of research. First, with Marty Wyngaarden Krauss of Brandeis University, I have conducted a 12-year study of aging families who had an adult son or daughter with mental retardation living at home when the study began. These families face a unique dual challenge: adjusting to the challenges of their own aging while at the same time continuing to have caregiving responsibilities for their son or daughter with retardation. The research examined the pattern of age-related changes and transitions in these families, how the changes affected the son or daughter with the disability, and the antecedents and consequences of out-of-home placement of the adult child.

A second line of research involves the comparison of parents of adults with developmental disabilities (most recently, autism and fragile X syndrome) with parents of adults with schizophrenia, in collaboration with Jan Greenberg of the University of Wisconsin-Madison. These studies have elucidated the diagnosis-specific aspects of family caregiving by examining differences in the stress and coping process for parents whose children have either developmental disabilities or schizophrenia, and consequent differences in their well-being. Support for this line of research comes from grants from the National Institute on Aging, the National Institute of Child Health and Human Development, and the National Institute of Mental Health.

My third line of research traces the life course impacts of parenting a child with a disability through two population-based studies.  One involves a unique cohort, the participants in the Wisconsin Longitudinal Study (WLS). In collaboration with Jan Greenberg and Frank Floyd of Georgia State University, this research analyzes data spanning nearly 50 years in the lives of parents who have a child with autism, fragile X syndrome, or schizophrenia. It is the only study to include pre-parenting measures as well as multiple follow-up points across the life course.  The second involves the MIDUS Study (Midlife in the US), a nationally representative sample of adults, including parents of individuals with disabilities-also in collaboration with Jan Greenberg.  This is the first study of parents of children with disabilities to include both psychosocial and biomarker data regarding the impact of nonnormative parenting across the lifespan.  These studies are also funded by the National Institute on Aging.