Dear Editor:
As a result of social and medical advances, adults with developmental disabilities are leading longer lives. But what does this trend mean for caregiving families, policymakers and service providers? The Aging Together study, a nationwide survey of older mothers of adults with developmental disabilities, is currently examining the issues with a special focus on the experiences of African American and Caucasian families.
Preliminary data released by the Aging Together study indicates that there are significant discrepancies between African American and Caucasian families in terms of services that are needed but not received by adults with developmental disabilities.
African American mothers were twice as likely as Caucasian mothers to report that their children needed medical services, dental services, psychological services, pre-vocational training or counseling, and legal assistance. In addition, nearly three quarters of African Americans reported a need for social and recreational activities.
Aging Together, a research study being conducted at Boston College, has completed interviews with 200 African Americans and 400 Caucasians. In order to better understand the needs of these women and their adult children with a developmental disability, we are now actively seeking an additional 200 African American mothers aged 50 and older, sharing a home with an adult son or daughter, aged 22 or over, who has a disability such as mental retardation or Down syndrome. These women will have the opportunity to tell their stories and have their voices heard. Policymakers and service providers will use this information as they prepare to meet the needs of adults with disabilities in the future.
The study, funded by the National Institute for Child Health and Human Development, is led by Dr. Rachel Pruchno, a well-known psychologist who studies African American and Caucasian families in their middle and later years. Says Pruchno, “This is the first generation of parents to face the challenges and rewards of living to advanced age with an adult son or daughter with mental retardation. In order for policies and services to meet the needs of these families, it is especially important that we speak with African American women.”
To participate or for more information on Aging Together, please call Jennifer Rosenbaum at 1-800-244-4470.
Jennifer Rosenbaum