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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]

Background There is currently no population-based research on the maternal characteristics or birth outcomes of U.S. women with intellectual and developmental disabilities (IDDs). Findings from small-sample studies among non-U.S. women indicate that women with IDDs and their infants are at higher risk of adverse health outcomes. Purpose To describe the maternal characteristics and outcomes among deliveries to women with IDDs and compare them to women with diabetes and the general obstetric population. Methods Data from the 1998–2010 Massachusetts Pregnancy to Early Life Longitudinal database were analyzed between November 2013 and May 2014 to identify in-state deliveries to Massachusetts women with IDDs. Results Of the 916,032 deliveries in Massachusetts between 1998 and 2009, 703 (<0.1%) were to women with IDDs. Deliveries to women with IDDs were to those who were younger, less educated, more likely to be black and Hispanic, and less likely to be married. They were less likely to identify the father on the infant’s birth certificate, more likely to smoke during pregnancy, and less likely to receive prenatal care during the first trimester compared to deliveries to women in the control groups ( p <0.01). Deliveries to women with IDDs were associated with an increased risk of adverse outcomes, including preterm delivery, very low and low birth weight babies, and low Apgar scores. Conclusions Women with IDDs are at a heightened risk for adverse pregnancy outcomes. These findings highlight the need for a systematic investigation of the pregnancy-related risks, complications, costs, and outcomes of women with IDDs. [ABSTRACT FROM AUTHOR]

Objective. We examined receipt of cervical cancer screening and determinants of screening for women with intellectual disabilities in one Southeastern state. Methods. Using medical records data from 2006 through 2010 for community-dwelling women with intellectual disabilities who were 18--65 years of age (n=163), we employed descriptive and bivariate statistics and a multivariate regression model to examine receipt of cervical cancer screening and the determinants of cervical cancer screening across women's sociodemographic and health-care provider characteristics. Results. Of women 18--65 years of age with intellectual disabilities, 55% received a Papanicolaou (Pap) test during 2008--2010, markedly below the Healthy People 2020 targets or rates of Pap test receipt of women without intellectual disabilities. Women with intellectual disabilities who lived in residential facilities, those who lived in rural communities, and those who had an obstetrician/gynecologist had higher rates of receipt of care than other women with intellectual disabilities. Conclusions. Assertive measures are required to improve the receipt of cervical cancer screening among women with intellectual disabilities. Such measures could include education of women with intellectual disabilities, as well as their paid and family caregivers, and incentives for health-care providers who achieve screening targets. [ABSTRACT FROM AUTHOR]

The article discusses the importance of breast and cervical cancer screening for women with intellectual disabilities. The Papanicolaou (Pap) test and the mammogram are identified as the most common types of preventive screenings for women. Some of the challenges faced by women with intellectual disabilities related to health screenings are stated, including the lack of knowledge of needed screenings. Social workers are advised to work closely with these women and their families and caregivers.

There is a critical need for objective data about receipt of preventive healthcare screenings that are not subject to self-response bias. However, no available evidence indicates which methods are effective for obtaining retrospective medical record data for women with intellectual disabilities ( ID) receiving care in the community. This article describes a procedure for obtaining retrospective medical record data for 199 women with ID who took part in a community-based, multisite, randomized controlled trial of a health education intervention. Data were analyzed to determine rates of correct physician identification and physician response rates during the 2006-2009 study periods. To assess accuracy in identifying physicians and response rates over time, Mc Nemar's test of paired proportions for dependent samples was used. Physician identification varied over time with correct identification being highest in more recent years. The majority of practices responded to our requests for medical record data; however, response rates and item completion rates were highest for the most recent data, with rates declining significantly for data from earlier years. Obtaining retrospective medical record data from community-based medical practices is possible, but difficult. Therefore, researchers should budget resources to accommodate a lengthy process with extensive follow-up. Researchers interested in older medical data face additional challenges in obtaining complete records. [ABSTRACT FROM AUTHOR]

Background: Women with developmental disabilities are much less likely than nondisabled women to receive cervical and breast cancer screening according to clinical guidelines. One barrier to receipt of screenings is a lack of knowledge about preventive screenings. Method: To address this barrier, we used a randomized control trial (n = 175 women) to test Women Be Healthy, an intervention designed to promote cervical and breast cancer screening for women with developmental disabilities. Women assigned to the experimental group participated in weekly health education program for 8 weeks. Women assigned to the control group participated in their regular vocational training or educational activities. Results: Unadjusted findings indicated modest gains for both groups in knowledge related to cervical and breast cancer screening. Regression results indicated statistically significant but modest knowledge gains for the experimental group related to breast cancer screening. Implications: These findings indicate that the Women Be Healthy curriculum is promising but needs to better address cervical cancer. [ABSTRACT FROM AUTHOR]

The forces shaping intellectual disability policy-making are diverse; while many of the policy issues reviewed in this issue are specific to intellectual disabilities, there are others that transcend disability-specific concerns. Our review is organized around six emerging demographic and socio-cultural trends that may directly and profoundly impact the intellectual disability field: aging, changing labor markets, immigration, families, federalism, and culture. Each of these trends is discussed in terms of their relevance and potential impact on disability policy. © 2007 Wiley-Liss, Inc. MRDD Research Reviews 2007;13:188–194. [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]

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]

Research suggests that women with intellectual and developmental disabilities are at increased risk for adverse pregnancy outcomes. Further, they report unmet perinatal care needs. This qualitative study examined clinician perspectives on barriers to providing perinatal care to women with intellectual and developmental disabilities. We conducted semi-structured interviews and one focus group with US obstetric care clinicians (n = 17). We used a content analysis approach to code data and analyse them for larger themes and relationships. the majority of participants were white, non-Hispanic, and female. Participants reported barriers providing care to pregnant women with intellectual and developmental disabilities across individual (e.g., communication challenges), practice (e.g., identification of disability status), and system levels (e.g., lack of clinician training). clinician training and evidence-based guidelines for perinatal care of women with intellectual and developmental disabilities as well as services and supports during pregnancy are needed. [ABSTRACT FROM AUTHOR]

Objective: To compare the risk of interpersonal violence experienced by pregnant and postpartum individuals with physical disabilities, sensory disabilities, or intellectual or developmental disabilities with those without disabilities, and to examine whether a prepregnancy history of interpersonal violence puts individuals with disabilities, at excess risk of interpersonal violence in the perinatal period.Method: This population-based study included all individuals aged 15-49 years with births in Ontario, Canada, from 2004 to 2019. Individuals with physical (n=147,414), sensory (n=47,459), intellectual or developmental (n=2,557), or multiple disabilities (n=9,598) were compared with 1,594,441 individuals without disabilities. The outcome was any emergency department visit, hospital admission, or death related to physical, sexual, or psychological violence between fertilization and 365 days postpartum. Relative risks (RRs) were adjusted for baseline social and health characteristics. Relative excess risk due to interaction (RERI) was estimated from the joint effects of disability and prepregnancy violence history; RERI>0 indicated positive interaction.Results: Individuals with physical (0.8%), sensory (0.7%), intellectual or developmental (5.3%), or multiple disabilities (1.8%) were more likely than those without disabilities (0.5%) to experience perinatal interpersonal violence. The adjusted RR was 1.40 (95% CI 1.31-1.50) in those with physical disabilities, 2.39 (95% CI 1.98-2.88) in those with intellectual or developmental disabilities, and 1.96 (95% CI 1.66-2.30) in those with multiple disabilities. Having both a disability and any violence history produced a positive interaction for perinatal interpersonal violence (adjusted RERI 0.87; 95% CI 0.47-1.29).Conclusion: The perinatal period is a time of relative high risk for interpersonal violence among individuals with pre-existing disabilities, especially those with a history of interpersonal violence. [ABSTRACT FROM AUTHOR]

Introduction: Postpartum health care among women with intellectual and developmental disabilities has not been well studied. This study uses administrative claims to compare postpartum outpatient visits among women with and without intellectual and developmental disabilities.Methods: Massachusetts All Payers Claims Database 2012-2015 was used to identify women with intellectual and developmental disabilities and a live birth during 2012-2014, matched by infant birth year to 3 women without intellectual and developmental disabilities. Women were followed up for 1 year after delivery. Analyses were conducted in 2019. Poisson regression compared guideline-concordant postpartum and other outpatient visits during the early (21-56 days after delivery) and late (57-365 days after delivery) periods. Types of nonpostpartum care visits were examined.Results: Overall, 962 and 2,886 women with and without intellectual and developmental disabilities, respectively, comprised the sample. Among women with intellectual and developmental disabilities, 23.9% had a postpartum visit in the early and 33.3% in the late postpartum periods, compared with 25.2% and 32.1% of women without intellectual and developmental disabilities who had visits in the early and late postpartum periods, respectively (p=0.49, 0.59). Women with intellectual and developmental disabilities were more likely to have other outpatient visits than those without intellectual and developmental disabilities, both in the early (63.1% vs 40.3%, adjusted RR=1.42, 95% CI=1.28, 1.58, p<0.001) and late (94.2% vs 82.3%, RR=1.11, 95% CI=1.08, 1.14, p=0.008) postpartum periods. Ancillary services, home health services, and alcohol/drug-related visits were much more common among women with intellectual and developmental disabilities.Conclusions: Women with intellectual and developmental disabilities are equally likely to receive guideline-concordant postpartum visits and more likely to have other outpatient visits than other women. Further research is needed to evaluate visit quality and identify best practices to support mothers with intellectual and developmental disabilities during the postpartum period. [ABSTRACT FROM AUTHOR]

Objective: To estimate provision of moderately and highly effective reversible contraceptives to women with intellectual and developmental disabilities.Methods: We used data from the Massachusetts All-Payer Claims Database to identify women aged 15-44 years with and without intellectual and developmental disabilities who were continuously enrolled in a private commercial insurance plan, Medicaid, or Medicare in 2012. We calculated the percentage of women aged 15-44 years who were not medically or surgically sterile and were provided 1) highly effective, long-acting reversible contraception (LARC, the intrauterine device or subdermal implant); or 2) prescriptions for moderately effective methods (pill, patch, ring, shot, or diaphragm). Logistic regression models estimated the odds of LARC and moderately effective method provision by disability status, adjusted for age, income, and Medicaid receipt.Results: Among 915,561 women who were not medically or surgically sterile, 13,059 women (1.4%) had at least one intellectual and developmental disability. Women with intellectual and developmental disabilities were less likely to be provided LARC (2.1% vs 4.2%, P<.001, adjusted odds ratio [OR] 0.43, 95% CI 0.38-0.48, P<.001) and moderately effective methods (21.1% vs 29.9%, P<.001, adjusted OR 0.68, 95% CI 0.65-0.71, P<.001) than women without intellectual and developmental disabilities. The one exception was the progestin shot, which was provided more often to women with intellectual and developmental disabilities than women without these disabilities (14.7% vs 4.3%, P<.001). Among a subset of women who only received moderately effective methods or LARC (n=310,344), women with intellectual and developmental disability had lower odds of receiving LARC than moderately effective methods (adjusted OR 0.59, 95% CI 0.52-0.67).Conclusion: The study findings raise concerns that the provision of LARC and moderately effective methods differs based on the presence of intellectual and developmental disabilities. Greater understanding is needed regarding factors that underlie lower provision of LARC in comparison with moderately effective methods, especially the progestin shot, among women with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]