Search

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]

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed. [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]

We examined the association between state Medicaid spending for children with disabilities and the financial burden reported by families of children with autism. Child and family data were from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 2,011 insured children with autism). State characteristics were from public sources. The 4 outcomes included any out-of- pocket health care expenditures during the past year, expenditure amount, expenditures as a proportion of family income, and whether additional income was needed to care for a child, We modeled the association between state per capita Medicaid spending for children with disabilities and families' financial burden, controlling for child, family, and state characteristics. Overall, 78% of families raising children with autism had health care expenditures for their child for the prior 12 months; 42% reported expenditures over $500, with 34% spending over 3% of their income. Families living in states with higher per capita Medicaid spending for children with disabilities were significantly less likely to report financial burden. There is a robust relationship between state Medicaid spending for children with disabilities and the financial burdens incurred by families raising children with autism. [ABSTRACT FROM AUTHOR]

We examined racial and ethnic disparities in quality of care for children with autism and other developmental disabilities and whether disparities varied for children with autism compared to children with other developmental disabilities. Analyzing data from the National Survey of Children with Special Health Care Needs (N = 4,414), we compared Black and Latino children to White children. We found racial and ethnic disparities on 5 of 6 quality outcomes. The interaction between race and disability status indicated that disparities in quality indicators were exacerbated among families of children with autism. These analyses suggest that children with autism, particularly those who are Latino and Black, face greater challenges in receiving high-quality health care. [ABSTRACT FROM AUTHOR]

Women with developmental disabilities are significantly less likely than women without disabilities to receive cervical and breast cancer screening according to clinical guidelines. The reasons for this gap are not understood. The present study examined the extent of women's knowledge about cervical and breast cancer screening, with the intention of informing the development and testing of interventions to increase cervical and breast cancer screening rates for these women. In a sample of 202 community-dwelling women with developmental disabilities, most women had little knowledge of cervical and breast cancer screening. Women who were living at home with family caregivers had the most limited understanding of cervical and breast cancer screening. Policy and practice implications are discussed. [ABSTRACT FROM AUTHOR]

A focus group study was conducted with individuals with developmental disabilities to understand their perspectives on their health status, health promotion behaviors, and health care services they receive. The majority of participants reported good to excellent health, and all had some form of medical insurance. However, participants reported notable gaps in dental and reproductive health care and age-specific cancer screening. Some adults had good access to medical care, particularly those with a family member or friend who served as their health advocate. Some adults had a sound understanding of their health and health care needs. Program and policy implications are discussed and recommendations are presented to ensure adequate health care for adults with disabilities, including health advocacy training for caregivers. [ABSTRACT FROM AUTHOR]

The article reports on the Healthy Families Act, a pending legislation to protect working families. Some workers from the moderate and low-income labor force do not receive pay for sick days, resulting in family members having to choose between caring for their sick or earning income. In addition, working families with developmentally disabled children are prone to poverty. The proposed Healthy Families Act aims to extend the paid sick days for the care of non-working family members. An overview of the law is provided.

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]

We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older. [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]

Trends in family support spending and new programmatic initiatives across the country during the 1990s are summarized. Nationally, total spending for family support exceeded $1 billion in 2000. Between 1990 and 2000, spending for such services in the United States grew from 1.5% to 4% of total resources expended by state MR/DD agencies. However, we found considerable state variability in level of resources allocated to support families providing care to a member with developmental disabilities. Programmatic initiatives include trends toward family-directed services, targeted programs for special populations, such as ethnic minorities and aging caregivers, and the slow expansion of cash subsidies. Recommendations for the future course of policy in this area are provided. [ABSTRACT FROM AUTHOR]

Studies the status of family support services and expenditures in the United States. Trends in family support spending from 1986-1998; Funding for family support services; Government subsidy.

Understanding the pregnancy experiences of racial and ethnic minority women with intellectual and developmental disabilities (IDD) is critical to ensuring that policies can effectively support these women. This research analyzed data from the 1998-2013 Massachusetts Pregnancy to Early Life Longitudinal (PELL) data system to examine the racial and ethnic disparities in birth outcomes and labor and delivery charges of U.S. women with IDD. There was significant preterm birth disparity among non-Hispanic Black women with IDD compared to their non-Hispanic White peers. There were also significant racial and ethnic differences in associated labor and delivery-related charges. Further research, examining potential mechanisms behind the observed racial and ethnic differences in labor and delivery-related charges in Massachusetts' women with IDD is needed. [ABSTRACT FROM AUTHOR]

Women with intellectual disability do not receive cervical and breast cancer screening at the same number as women without disabilities. Numerous barriers to receipt of screening have been reported by individuals with intellectual disability, paid caregivers, nurses, and other medical professionals. This study utilized semi-structured qualitative interviews to assess barriers to care from the perspective of female familial caregivers (n = 32). Caregivers reported a number of barriers to care including not knowing or not believing the exam was needed for their family member and discomfort during exams. Caregivers also described enablers to screening. The most common response to what enabled the woman with an intellectual disability to receive the exam was preparation prior to the exam. A significant portion of the sample of family caregivers lacked knowledge about the need for cervical and breast cancer screening by women with intellectual disability. Policy recommendations are discussed. [ABSTRACT FROM AUTHOR]