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This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation, advocacy, and providing emotional support throughout pregnancy. Informal supports helped with errands, comfort, and emotional encouragement. The community surrounding these women facilitated communication with providers, self-empowerment regarding health choices, and increased preparedness for parenthood. Findings indicate the importance of encouraging and sustaining both formal and informal supports during pregnancy, childbirth, and postpartum to improve pregnancy and parenting experiences for women with IDD. [ABSTRACT FROM AUTHOR]

Barriers to health care access can greatly affect one's health status. Research shows that U.S. adults with intellectual and developmental disabilities (IDD) have poor health and face barriers such as long waits for appointments. However, whether barriers differ by race and ethnicity has not been examined. We conducted a secondary data analysis using the 2002-2011 Medical Expenditure Panel Survey dataset, and compared perceived barriers of community-living U.S. adults with IDD in three racial and ethnic groups (White, Black, and Latinx). Specifically, we examined the top reasons for not having usual source of care, delaying or foregoing medical care. For Black and Latinx adults with IDD, the most-mentioned reasons for not having usual source of care, delaying or foregoing medical care were "don't like/don't trust doctors," "don't use doctors," and "don't know where to get care." In comparison, the White adults with IDD group's biggest perceived barriers were location and insurance related. All groups cited that being unable to afford care was a top reason for delaying or foregoing care. Policies/interventions to improve health care access in racial/ethnic minorities with IDD must first address the topic of developing trust between patients and the health professions. Insurance and the rising costs of care are also key areas that need attention. [ABSTRACT FROM AUTHOR]

In growing numbers, people with intellectual and developmental disabilities are outliving their parents, or at least their parents' ability to care for them. Consequently, adult siblings without intellectual and developmental disabilities are increasingly taking on primary caregiving responsibilities. However, adult siblings have received little study generally, and sibling caregivers have received even less. We used nationally representative data from the Survey of Income and Program Participation (SIPP) to describe the social characteristics and material hardship levels of sibling caregivers, in comparison to the general working age adult population. This study finds moderate material hardship to be pervasive among sibling caregivers, though extreme levels of hardship are possibly being abated somewhat through public benefit programs. Implications for greater service needs are discussed. [ABSTRACT FROM AUTHOR]

A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed. [ABSTRACT FROM AUTHOR]

Federal income maintenance programs for people with mental retardation in the United States were described. Combined SSI and DI spending in fiscal year 2000 totaled an estimated $20.6 billion for people with mental retardation. This population is particularly vulnerable to the vagaries of changing public policy and are particularly reliant upon public support. The relative importance of income programs in the lives of people with mental retardation is discussed and the changing role of federal social welfare policy with regard to these programs analyzed. [ABSTRACT FROM AUTHOR]