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Background While people with intellectual disability (ID) face disparities relating to sexual and reproductive health (SRH) services, little is known about the role of family caregivers who assist women and girls with ID access SRH services. This scoping review examined the findings of studies to elucidate the role of family caregivers with regard to SRH for women and girls with ID. Method We used Arksey and O'Malley's six-stage scoping framework, with Levac, Colquhoun and O'Brien's revisions, to evaluate identified sources. We searched three electronic databases, six ID journals and reference lists in full-text articles. Inclusion criteria included (1) primary and secondary source research studies in peer-reviewed journals; (2) published in English; (3) all research methodologies (i.e. qualitative, quantitative, mixed methods and systematic reviews or commentaries); (4) published between 2000 and 2016; and (5) studies from any country. Results The search yielded 2062 studies; 57 articles met inclusion criteria. Most studies employed purposive, convenience or criterion sampling. Participants included people with ID, family caregivers, paid caregivers and health-care professionals. Findings were summarised thematically: (1) menstruation and menopause; (2) vaccinations and preventive screenings; (3) supporting sexuality and healthy relationships; (4) coordinating with health-care providers and (5) contraception and sterilisation. Conclusions Findings from this scoping review underscore the need for more and better-quality research, including how family caregivers assist women and girls with ID access perinatal and preventive SRH services and sexual abuse education. Family caregivers, women and girls with ID and health-care providers need increased access to information about SRH.

People with intellectual disabilities (ID) have high lifetime risk of abuse and assault, including sexual violence. As adults with ID participate in research, researchers must be prepared for disclosures of past or current abuse. In collaboration with our state’s protective agency, we developed a protocol for responding effectively to disclosures of sexual violence from adult research participants with ID. We completed a literature review clarifying best practices for responding to disclosures of abuse by adults with ID. The literature focused on various professionals but we were unable to find evidence clarifying researchers’ roles in responding to sexual violence. Working with our state protective services agency, we adapted these practices to develop protocols and an algorithm for responding to disclosure, as well as materials for participants. Our protocol for abuse reporting considers all members of the research team to be mandated reporters, emphasizes informed consent, and details specific steps for responding to disclosures of abuse in the context of research. It represents a collaboration between academic researchers and community partners. Research participation by people with ID may represent an opportunity for disclosure of past or current abuse, and therefore, it is imperative that researchers are equipped to respond effectively. Policy-level responses to prevent abuse and enable justice are also needed; however, ensuring that researchers respond systematically and effectively to disclosures is crucial to the ethical conduct of research with a vulnerable population. We anticipate that the frequency with which researchers will need to use this protocol will depend on the nature of their research. In practice, we recommend including this protocol as part of the overall study protocol and submitting it for Institutional Review Board (IRB) approval. Future research to test our protocol in the field is recommended.

RESEARCH OBJECTIVE: The Supplemental Nutrition Assistance Program (SNAP) has been found to reduce food hardships, which are associated with poor health and health care outcomes among children. Evidence that SNAP improves adult health and healthcare outcomes is growing, but studies including children have been limited. The need to assess these potential relationships among children with special health care needs (SHCN) is particularly pronounced, given their heightened social and health care complexity. We therefore aimed to (i) examine relationships between SNAP, food hardships, health status, and health care use among children, and (ii) examine whether SHCN status modified any of these relationships. STUDY DESIGN: To estimate the relationship between SNAP and food hardships, we followed prior studies in using a bivariate probit model with state‐level SNAP administrative policies as instruments (to account for disproportionate self‐selection into SNAP among households with high food hardships). We estimated this model within a structural equation modeling framework to simultaneously estimate downstream associations with health status and health care use. Household food insufficiency (FI) and excellent health status (versus very good, good, fair, or poor; a robust dichotomization among children) were modeled as mediators of the relationship between any SNAP receipt and any emergency department (ED) use over the prior year. We interacted SHCN status with SNAP to assess modification, and we adjusted for sociodemographic and environmental variables (e.g., exposure to smoking). Associations were estimated as the combination of direct and indirect effects. Predicted probabilities were calculated for interpretability. POPULATION STUDIED: Using pooled 2016, 2017, and 2018 National Survey of Children's Health data (nationally representative), we examined 17,791 children in households with income below 150% of the federal poverty level (a cutoff used in prior studies), 4710 of whom had SHCN based on a validated instrument. PRINCIPAL FINDINGS: SNAP was associated with: decreased FI likelihood, increased excellent health status likelihood, and decreased ED use likelihood; SHCN status was associated with an increase in the magnitude of each of these relationships. All associations had p‐values ≤0.001. See table: [Table: see text] CONCLUSIONS: SNAP was associated with significant beneficial effects regarding a child's likelihood of experiencing FI, excellent health status, and ED use, with even more beneficial effects found for children with SHCN. IMPLICATIONS FOR POLICY OR PRACTICE: Though an incomplete solution, SNAP may improve child health and healthcare outcomes, particularly for children with elevated vulnerabilities. Greater investments in food hardship relief by healthcare systems (e.g., SNAP enrollment assistance, food Rx programs) and policymakers (e.g., increased SNAP benefits, reduced enrollment barriers) may pay substantial dividends in improved outcomes for these populations and the health systems providing them care. PRIMARY FUNDING SOURCE: National Institutes of Health.

BACKGROUND Women with intellectual and developmental disabilities (IDD) in the USA are bearing children at increasing rates. However, very little is known whether racial and ethnic disparities in birth outcomes and labour and delivery-related charges exist in this population. This study investigated racial and ethnic disparities in birth outcomes and labour and delivery-related charges among women with IDD. METHODS The study employed secondary analysis of the 2004-2011 Healthcare Cost and Utilization Project National Inpatient Sample, the largest all-payer, publicly available US inpatient healthcare database. Hierarchical mixed-effect logistic and linear regression models were used to compare the study outcomes. RESULTS We identified 2110 delivery-associated hospitalisations among women with IDD including 1275 among non-Hispanic White women, 527 among non-Hispanic Black women and 308 among Hispanic women. We found significant disparities in stillbirth among non-Hispanic Black and Hispanic women with IDD compared with their non-Hispanic White peers [odds ratio = 2.50, 95% confidence interval (CI): 1.16-5.28, P

Background Despite an increase in international studies examining the experiences of parents with intellectual impairments and their children, few have utilised population-based data. This study investigated the behavioural and cognitive outcomes of 3-year-old US children of mothers with intellectual impairments compared with children of mothers without intellectual impairments. Methods This study employed a secondary analysis of the Fragile Families Child and Wellbeing Study, a longitudinal birth cohort study in the US. Our analytic sample included mothers with intellectual impairments (n = 263) and a comparison group of mothers without intellectual impairments (n = 1298), as well as each sampled mother's focal child. When weighted, Fragile Families is representative of all births in US cities with populations over 200 000. Results Children of mothers with intellectual impairments had poorer behavioural and cognitive outcomes in comparison to same-age children of mothers without intellectual impairments. Notably, however, children of mothers with intellectual impairments were not at increased risk of being aggressive unless their family income was below 200% of the federal poverty level. Further, families headed by mothers with intellectual impairments experienced multiple hardships related to socioeconomic factors, limited social supports and poor self-reported health. Conclusion Appropriate policies and programmes must be developed and implemented to effectively support these families, such as increased financial benefits.

Background Children with autism spectrum disorder (ASD) experience a range of severity levels characterised as levels of support they need for everyday functioning. By this definition, greater levels of severity should warrant greater use of services and supports among children with ASD. In previous studies, Latino children with ASD in the USA have been shown to have lower access to diagnosis and treatment services than White children. However, none have examined service use in relation to severity. In this study, we examined whether there are ethnic disparities between Latino and White children with ASD in specialty autism-related services, and whether functional severity moderates the relationship between ethnicity and receipt of autism services. Methods We used data from the Survey of Pathways to Diagnosis and Services, a supplement to the National Survey of Children with Special Health Care Needs and analysed four specialty services commonly used by children with ASD, adjusting for demographic variables. Results We found that Latino children with ASD who had severe limitations received fewer specialty autism-related services than White children with similarly severe conditions. These disparities were evident despite the fact that the sample of Latino children in these data were more privileged than the general US Latino population. Conclusion Assertive policy initiatives are needed to address these disparities and ensure that these highly vulnerable children with severe functional limitations receive appropriate services and supports.

Background There is a critical need for evidence-based health education interventions for women with intellectual disabilities (IDs) to promote receipt of preventive health screenings. Previous research has established Women Be Healthy, an 8-week classroom-style intervention designed to teach women with IDs about breast and cervical cancer screenings, as a promising practice. However, additional research is needed to determine how to further improve screening-related knowledge gains. This study aimed to test a modified version of Women Be Healthy, Women Be Healthy 2, and compare its effectiveness in increasing knowledge gains to the original intervention. Method Women living in the community across one state in the United States were randomly assigned to a treatment (n = 98), delayed treatment, (n = 35), or no intervention group (n = 65). Women in the treatment group received Women Be Healthy, and women in the delayed treatment group received the modified Women Be Healthy 2. Baseline and post-intervention interviews were conducted to measure knowledge of cervical and breast cancer screening. Knowledge scores were compared across groups. Results Among the nine knowledge items measured, one breast knowledge measure and one cervical knowledge measure showed statistically significant group differences; marginally significant differences were observed for two other knowledge measures. After adjusting for covariates, women who received Women Be Healthy 2 had increased knowledge overall compared with the women receiving no intervention. Conclusion Women Be Healthy 2 is promising, but additional efforts appear necessary to increase the knowledge women with IDs have about cervical and breast cancer screening.

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, McNemar'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.

Background The need for evidence-based health promotion interventions for women with intellectual and developmental disabilities is critical. However, significant barriers impede them from participating in research, including those related to recruitment and obtaining informed consent. Methods This study describes a procedure for the recruitment and consent of women with intellectual disabilities into a community-based, multi-site randomised controlled trial. Results Of 269 women who participated in information sessions, 203 (75%) enrolled in the study. While women with and without legal guardians consented at the same approximate rates (83% and 85%, respectively), those with legal guardians enrolled at significantly lower rates (61%) because of lower rates (74%) of guardian consent. Conclusions It is possible to recruit community-dwelling women with intellectual disabilities into randomised controlled trials at relatively high participation rates. Recruiting women who have guardians poses additional challenges for researchers.

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.