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Breastfeeding provides infants with nutrients required for optimal growth and development. We aimed to examine breastfeeding practices and supports that promote exclusive breastfeeding during the birth hospital stay among birthing parents with physical disabilities, sensory disabilities, intellectual or developmental disabilities, and multiple disabilities compared with those without a disability.This population-based cohort study was done in Ontario, Canada. We accessed and analysed health administrative data from ICES and the Better Outcomes RegistryNetwork. We included all birthing parents aged 15-49 years who had a singleton livebirth between April 1, 2012, and March 31, 2018. The study outcomes were breastfeeding practices and supports that promoted exclusive breastfeeding during the birth hospital stay, conceptualised based on WHO-UNICEF Baby Friendly Hospital Initiative guidelines. Individuals with a physical disability, sensory disability, intellectual or developmental disability, or two or more (multiple) disabilities, identified using diagnostic algorithms, were compared with individuals without disabilities on the opportunity to initiate breastfeeding, in-hospital breastfeeding, exclusive breastfeeding at hospital discharge, skin-to-skin contact, and provision of breastfeeding assistance. Relative risks (RRs) were estimated using modified Poisson regression.Our cohort included 634 111 birthing parents, of whom 54 476 (8·6%) had a physical disability, 19 227 (3·0%) had a sensory disability, 1048 (0·2%) had an intellectual or developmental disability, 4050 (0·6%) had multiple disabilities, and 555 310 (87·6%) had no disability. Individuals with intellectual or developmental disabilities were less likely than those without a disability to have an opportunity to initiate breastfeeding (adjusted RR 0·82, 95% CI 0·76-0·88), any in-hospital breastfeeding (0·85, 0·81-0·88), exclusive breastfeeding at hospital discharge (0·73, 0·67-0·79), skin-to-skin contact (0·90, 0·87-0·94), and breastfeeding assistance (0·85, 0·79-0·91). Those with multiple disabilities were less likely to have an opportunity to initiate breastfeeding (0·93, 0·91-0·96), any in-hospital breastfeeding (0·93, 0·92-0·95), exclusive breastfeeding at hospital discharge (0·90, 0·87-0·93), skin-to-skin contact (0·93, 0·91-0·95), and breastfeeding assistance (0·95, 0·92-0·98). Differences for individuals with a physical or sensory disability only were mostly non-significant.Our findings show disparities in breastfeeding outcomes between individuals without a disability and individuals with intellectual or developmental disabilities or multiple disabilities, but not individuals with physical or sensory disabilities. There is a need for further research on the factors that contribute to breastfeeding intentions, practices, and supports in people with intellectual or developmental disabilities and multiple disabilities, especially factors that affect breastfeeding decision making.National Institutes of Health and the Canada Research Chairs Program.

BACKGROUND Mental health conditions are common among individuals with intellectual disability. Under recognition of mental health disorders leading to unmet treatment needs is common in this population. This article addresses one major contributing factor, the lack of cognitively accessible self-report measures for individuals with intellectual disability. METHOD In this literature-informed overview of the state of the field, we discuss the need for, and complexities of, including individuals with intellectual disability in mental health assessments. RESULTS With appropriate supports, many individuals with intellectual disability can respond to mental health questions. We discuss evidence-based strategies to make mental health assessments more accessible. CONCLUSION We highlight the need to engage individuals with intellectual disability to provide first-hand information about their health and well-being. New instruments and research procedures should be developed in partnership with individuals with intellectual disability. Self-report may be essential to advancing the science of mental health research.

Background Accessible and quality care during the perinatal period is critical for optimal maternal and neonatal health. Using the socio-ecological model, the purpose of this study was to explore barriers and facilitators that shape the perinatal care experiences of people with intellectual and/or developmental disabilities (IDD). Methods Semi-structured interviews were conducted with 10 individuals with IDD in Ontario, Canada, who had given birth within the past 5 years. Interviews focused on care experiences before, during, and after pregnancy. Data were analyzed using a directed content analysis approach, and the socio-ecological model guided analysis. Results Barriers at the societal (e.g., cultural norms of motherhood), policy/institutional (e.g., child protection policies and practices), interpersonal (e.g., inadequate formal and informal support), and intrapersonal levels (e.g., internalized stigma) contributed to participants having negative perinatal care experiences. Conversely, we identified facilitators on the interpersonal level (e.g., positive interactions with perinatal care providers and familial and social service supports) as positively shaping participants’ perinatal care experiences. Conclusions Findings reveal that the perinatal care experiences of people with IDD are shaped by several interrelated factors that largely stem from societal-level barriers, such as dominant (stigmatizing) discourses of disability. To improve the perinatal care experiences of people with IDD, there is a need for interventions at multiple levels. These include the development of policies to support perinatal care for diverse populations and training care providers to enact policies at the institutional and interpersonal levels.

The American Association on Intellectual and Developmental Disabilities (AAIDD) has been a leader in the field of intellectual and developmental disabilities since its founding in 1876. Today, student and early career professionals make up approximately 8.5% of the organization, with their engagement supported by the Student and Early Career Professional Interest Network (SECP). An article by Havercamp et al. (2003), “Who Will Lead the Field Beyond 2020?”, recommended organizational changes that have been largely addressed in the years following by SECP. The present research replicates Havercamp et al.'s (2003) original survey of the organization's student and early career professionals, and results support the effectiveness of SECP as a welcoming platform from which students and early career professionals can establish themselves in the organization.

Sexuality education (SE) for individuals with intellectual and developmental disabilities is needed, but is sparse. Seven individuals with intellectual and developmental disabilities and two educat...

Aggression is a known contributor to burnout and caregiver instability among direct support professionals (DSPs) caring for adults with developmental disabilities. However, few studies have explored the differential effects of aggression subtypes on caregivers and what implications these may have for intervention planning. This longitudinal study examined whether different types of aggression were associated with greater burnout and instability in DSPs. Ninety DSPs reported on their experiences working with aggressive clients with developmental disabilities at baseline and at a 3-month follow-up. Participants were roughly representative of the population of DSPs in the United States. Verbal aggression and reduced length of time knowing the aggressive adult significantly predicted caregiver instability, with participants who had stopped working with the aggressive adult experiencing significantly worse verbal aggression than participants who were still working with the adult at follow-up. Hostile affect significantly predicted burnout. Verbal aggression and hostility, which are less frequently targeted for intervention as more dangerous forms of aggression, pose risks for caregivers and therefore warrant active attention through intervention. DSPs would benefit from training on how to diffuse and redirect verbal aggression and hostility, as well as use coping strategies to mitigate against the negative emotional effects of aggression.

While an increasing number of girls and women are being identified with autism, we know little about the health of reproductive-aged autistic women. Our objectives were to (1) describe health characteristics of reproductive-aged autistic women who could potentially become pregnant and (2) compare these characteristics with those of non-autistic women. We conducted a population-based cross-sectional study using 2017–2018 administrative health data from Ontario, Canada. A total of 6,870 fifteen- to 44-year-old autistic women were identified and compared with 2,686,160 non-autistic women. Variables of interest included social determinants of health (neighborhood income, residential instability, material deprivation, rurality), health (co-occurring medical and psychiatric conditions, use of potentially teratogenic medications, history of assault), and health care factors (continuity of primary care). Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, use of potentially teratogenic medications, and history of assault. These findings highlight the need for health interventions tailored to the needs of reproductive-aged autistic women. Lay abstract While an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women’s health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, history of assault, and use of potentially teratogenic medications (i.e. drugs that can be harmful to the development of an embryo or fetus). These findings suggest that there is a need for health interventions tailored to the needs of reproductive-aged autistic women.

According to the World Health Organization, sexuality education (SE) is considered a human right and aims to increase understanding, decrease abuse, unplanned pregnancies, and sexually transmitted ...

Background: There is growing recognition that preconception health, defined as the health of all reproductive-age individuals, impacts reproductive and perinatal outcomes. Although women with disabilities are becoming pregnant at increasing rates, little is known about their preconception health. Our objective was to describe the preconception health characteristics of women with physical, sensory, and intellectual/developmental disabilities and compare these characteristics with women without disabilities. Materials and Methods: We conducted a population-based cross-sectional study of 15- to 44-year-old women with physical (n = 253,184), sensory (n = 93,170), intellectual/developmental (n = 8,986), and multiple disabilities (n = 29,868), and women without these disabilities (n = 2,307,822) using Ontario health administrative data (2017–2018). We described preconception health variables related to social determinants of health, physical health status, psychosocial well-being, history of assault, medication use, and continuity of primary care and compared women with and without disabilities in crude and age-standardized analyses, with standardized differences >0.10 indicating clinically meaningful results. Results: Women with physical, sensory, intellectual/developmental, and multiple disabilities had poorer preconception health than women without disabilities. Disparities were pronounced for physical health status, psychosocial well-being, use of potentially teratogenic medications, and history of assault. Of all groups, women with intellectual/developmental disabilities had the greatest disparities. Conclusion: Further research is needed to identify contributors to poor preconception health among women with disabilities and to develop tailored preconception health interventions to meet their unique needs and experiences.

To examine the risk of perinatal mental illness, including new-onset disorders and recurrent or ongoing use of mental health care, comparing women with physical, sensory, intellectual/developmental, and multiple disabilities to those without a disability.From all women aged 15-49 years with a singleton birth in Ontario, Canada (2003-2018), those with physical (n = 144,972), sensory (n = 45,249), intellectual/developmental (n = 2,227), and ≥ 2 of these disabilities ("multiple disabilities"; n = 8,883), were compared to 1,601,363 without a disability on risk of healthcare system contact for mental illness from conception to 365 days postpartum. The cohort was stratified into: (1) no pre-pregnancy mental illness (to identify new-onset illness), (2) distal mental illness ( 2 years pre-pregnancy, to identify recurrent illness), and (3) recent mental illness (0-2 years pre-pregnancy, to identify ongoing contact). Modified Poisson regression generated relative risks (aRR), adjusted for age, parity, income quintile, and rural residence.About 14.7, 26.5, and 56.6% of women with no disabilities had new-onset, recurrent, and ongoing contact for mental illness, respectively, perinatally. Risks were elevated across disability groups for new-onset (physical: aRR 1.18, 95% CI 1.16-1.20; sensory: 1.11, 1.08-1.15; intellectual/developmental: 1.38, 1.17-1.62; multiple: 1.24, 1.15-1.33), recurrent (physical: 1.10, 1.08-1.12; sensory 1.06, 1.02-1.09; intellectual/developmental: 1.24, 1.11-1.37; multiple: 1.16, 1.09-1.23), and ongoing contact (physical: 1.09, 1.08-1.10; sensory: 1.08, 1.06-1.10; intellectual/developmental: 1.31, 1.26-1.37; multiple: 1.20, 1.16-1.23).The heightened use of new, recurrent, and ongoing mental health care across disability groups in the perinatal period suggests that adapted screening and intervention approaches are critical to optimize perinatal mental health in this population.

OBJECTIVES To assess the risk of neonatal complications among women with a disability. METHODS This population-based cohort study comprised all hospital singleton livebirths in Ontario, Canada from 2003 to 2018. Newborns of women with a physical (N = 144 187), sensory (N = 44 988), intellectual or developmental (N = 2207), or ≥2 disabilities (N = 8823) were each compared with 1 593 354 newborns of women without a disability. Outcomes were preterm birth RESULTS Risks for neonatal complications were elevated among newborns of women with disabilities compared with those without disabilities. Adjusted relative risks were especially high for newborns of women with an intellectual or developmental disability, including preterm birth CONCLUSIONS There is a mild to moderate elevated risk for complications among newborns of women with disabilities. These women may need adapted and enhanced preconception and prenatal care, and their newborns may require extra support after birth.

Importance: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships. Objective: To understand barriers to, the context of, and recommendations for SE for people with IDD. Design: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach. Participants: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators. Results: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child’s sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood. Conclusions and Relevance: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood. What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.

Prior to the start of the pandemic, adults with intellectual disability (ID) were more likely to experience mental health difficulties and face barriers obtaining mental health care. COVID-related public health restrictions, combined with heightened challenges to obtain timely mental health care, have served to worsen this situation internationally, with a combination of new onset conditions and worsening mental health for those already struggling. In this narrative review, we summarize literature on the mental health of adults with ID during the COVID-19 pandemic to describe what is known based on clinician perceptions, existing administrative health data, family and staff perceptions, and self-report. In addition to noting similarities and differences in findings based on the source of information, we also explored how experiences differed depending on where and when the research was conducted. Based primarily on research conducted during the first six months of the pandemic, there is a consistent finding across sources of increased anxiety, stress, and isolation. This review also explored the delivery of virtual mental health care and the impact of pandemic-based mental health interventions. There have been very few research studies evaluating clinical care during this time but clinicians have managed to provide supports virtually, which has been evaluated positively by some individuals. This narrative review concludes by identifying gaps in the literature and suggests key directions for future mental health research, policy, and practice efforts. Any mental health efforts now and during pandemic recovery need to have an understanding of how the mental health needs and services for adults with ID have evolved over the course of the pandemic. Further research is needed on the impact of both clinical interventions and other nonclinical efforts on the mental health of people with ID.

This issue, On Counting What Matters: Finding Adults With Intellectual and Developmental Disabilities in Population Health Data, presents an overview of health surveillance research for people with intellectual and developmental disabilities (IDD) in the United States. Although public health now conducts surveillance of people with disabilities broadly defined and compares their health status with that of individuals without disabilities, there are many challenges in conducting health surveillance of people with IDD. Difficulties include how to define cases, how to find cases, and how to obtain accurate information (Krahn, Fox, Campbell, Ramon, & Jesien, 2010). This issue will present critical conceptual and methodological issues, including recent prevalence and population health analyses, along with proposals that can lead to more equitable health and improved health surveillance for people with IDD.

This qualitative study was carried out in Spain with the aim of identifying the changes that the health system should make to improve healthcare access for older adults with intellectual disability. Three hundred and sixty-nine family members and professionals expressed their opinion on how healthcare access could be improved. Participants responded to two open-ended questions included in a general survey about the health status of older individuals with intellectual disability. Most informants were women and professionals who had known the person with intellectual disability for more than 12 months. A system of categories, which showed good inter-rater agreement, was developed to analyse participants' written responses. Both family members and professionals emphasized the need to improve disability training for healthcare practitioners and highlighted the urgent need for flexibility in the structure of a healthcare system that currently overlooks the specific needs of this vulnerable population.

Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID.This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest).We used an inclusive research approach, in which we collaborated with adults with ID to revise, cognitively test, and pilot test cognitively accessible self-report measures. Technology supported the independent completion of measures. We assessed usability, usefulness, and reliability of these measures in 41 adults with ID.The resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest).Self- report by adults with ID is feasible. A key element of this measure adaptation process was engaging adults with ID. More research is needed to understand the reliability and validity of the adapted measures and the characteristics of the population for whom they are most usable.

Key Points Question What is the risk of severe maternal morbidity or mortality in women with a preexisting disability compared with women without disabilities? Findings This population-based cohort study evaluated more than 1.8 million births in Ontario, Canada. Compared with women without a disability, the adjusted relative risk of severe maternal morbidity or death was 29% higher among women with a physical disability, 14% higher among women with a sensory disability, 57% higher among women with an intellectual/developmental disability, and 74% higher among women with 2 or more disabilities. Meaning These findings suggest that preconception and perinatal care provisions should be considered among women with a disability to reduce the risk of adverse outcomes., Importance Severe maternal morbidity and mortality are important indicators of maternal health. Pregnancy rates are increasing in women with disabilities, but their risk of severe maternal morbidity and mortality is unknown, despite their significant social and health disparities. Objective To determine the risk of severe maternal morbidity or mortality among women with a physical, sensory, or intellectual/developmental disability compared with women without disabilities. Design, Setting, and Participants This population-based cohort study used linked health administrative data in Ontario, Canada, from 2003 to 2018. The cohort included all singleton births to women with preexisting physical, sensory, and intellectual/developmental disabilities as well as with 2 disabilities or more compared with women without a disability. Data analysis was conducted from September 2019 to September 2020. Exposures Disabilities were identified with published algorithms applied to diagnoses in 2 physician visits or more or at least 1 emergency department visit or hospitalization. Main Outcomes and Measures Severe maternal morbidity (a validated composite of 40 diagnostic and procedural indicators) or all-cause maternal mortality, arising between conception and 42 days post partum. Relative risks were adjusted for maternal age, parity, income quintile, rurality, chronic medical conditions, mental illness, and substance use disorders. Results The cohort comprised women with physical disabilities (144 972 women; mean [SD] age, 29.8 [5.6] years), sensory disabilities (45 259 women; mean [SD] age, 29.1 [6.0] years), intellectual/developmental disabilities (2227 women; mean [SD] age, 26.1 [6.4] years), and 2 or more disabilities (8883 women; mean [SD] age, 29.1 [6.1] years), and those without disabilities (1 601 363 women; mean [SD] age, 29.6 [5.4] years). The rate of severe maternal morbidity or death was 1.7% (27 242 women) in women without a disability. Compared with these women, the risk of severe maternal morbidity or death was higher in women with a physical disability (adjusted relative risk [aRR], 1.29; 95% CI, 1.25-1.34), a sensory disability (aRR, 1.14; 95% CI, 1.06-1.21), an intellectual/developmental disability (aRR, 1.57; 95% CI, 1.23-2.01), and 2 or more disabilities (aRR, 1.74; 95% CI, 1.55-1.95). Similar aRRs were observed for severe maternal morbidity or death arising in pregnancy, from birth to 42 days post partum, and from 43 to 365 days post partum. Women with disabilities were more likely than those without disabilities to experience multiple severe maternal morbidity indicators. The most prevalent indicators in all groups were intensive care unit admission, severe postpartum hemorrhage, puerperal sepsis, and severe preeclampsia. Conclusions and Relevance In this study, women with a preexisting disability were more likely to experience severe maternal morbidity or mortality. Preconception and perinatal care provisions should be considered among women with a disability to mitigate the risk of these rare but serious outcomes., This cohort study assesses the risk of severe maternal morbidity or mortality among women with a physical, sensory, or intellectual/developmental disability compared with women without disabilities.

BACKGROUND: Individuals with intellectual and developmental disabilities demonstrate disparities in sexual and reproductive health (SRH) compared to individuals without disabilities (e.g., lack of sexual education and knowledge, increased rates of abuse, unplanned pregnancies and sexually transmitted infections). Therefore, the purpose of this study was to identify topics healthcare providers address and perceived barriers and supports to SRH education. METHODS: We conducted semi-structured interviews with healthcare providers (N = 12). RESULTS: Providers address relationships, safety, protection and appropriate sexual behaviours with clients with intellectual and developmental disabilities. Parent education and client-centred care were identified as supports, while the patient's level of understanding, the provider's lack of knowledge or access to resources and to appropriate referrals were identified as barriers to SRH education. CONCLUSION: Future studies are needed to link providers to resources they can use to provide comprehensive, accessible SRH education for clients with intellectual and developmental disabilities.

Public health is inclusive and collaborative, involving a diverse workforce of practitioners ranging from professionals with expertise in health promotion to healthcare providers. Although many programs and efforts are intended to reach and serve everyone living in the community, yet people with disabilities are often overlooked in public health planning and programs. A fully prepared workforce would have the capacity to include people with disabilities in public health efforts. Disability competencies, such as Including People with disabilities: Public Health Workforce Competencies and Core Competencies on Disability for Health Care Education, were developed to guide disability training of the public health workforce. Workforce capacity may be built through promoting readiness for the change of inclusion of people with disabilities, practical collaboration experiences with partners, and learning from the act of working with people with disabilities in public health efforts. The public health workforce has an opportunity to more fully embrace the meaning of public health in service of the whole community by including people with disabilities.

With the rapidly changing landscape of the Covid-19 outbreak, how to best address the needs and continue to protect the health and well-being of people with disabilities (PwDs) is a global public health priority. In this commentary we identify three public health areas of ongoing need and offer possible strategies to address each. These areas include: the types of data that would help clarify risks for PwDs and help assure their safety long term; the prevention, treatment and mitigation measures for PwDs that are needed through the duration of the outbreak; and the issues of equity in access to and quality of medical care for PwDs. Because of the rapid nature of the public health response, it is critical to reassess and readjust our approach to best address the needs of PwDs in the months and years to come and to incorporate these new practices into future emergency preparedness responses.

Background Considering the growing body of studies investigating the effects of mindfulness-based interventions on caregivers supporting people with developmental disabilities, the current study aimed to explore the role that the cognitive processes of mindfulness, coping style and resilience played in predicting caregiver retention and burnout among a sample of direct support professionals working with aggressive adults with developmental disabilities. Methods Ninety-seven direct support professionals were surveyed to determine level of mindfulness, coping styles, resilience and burnout and were interviewed 3 months later to determine if they were still working with the aggressive adult. Results Mindfulness skills of describing non-judgmentally and observing one's environment, as well as problem-focused coping, emerged as protective factors against burnout, while avoidance-focused and maladaptive coping emerged as risk factors. Mindful openness acted as the only predictor of job retention. Conclusions These results support that paid caregivers should receive trainings in mindfulness and positive coping mechanisms as part of their job trainings, to promote positive outcomes for both themselves and the people they support.

Background Physicians report discomfort when interacting with patients with disabilities, which can negatively impact the quality of healthcare they provide. Objective/Hypothesis An intervention structured around a formative clinical encounter was assessed for its effectiveness in changing comfort towards treating patients with disabilities. It was predicted that this encounter would have a positive short- and long-term impact on medical students. Method During the 2017–2018 academic year, 169 third-year medical students conducted a patient encounter with a person who had a disability. Students met individually with the “patient” and completed a brief social and medical history as if they were meeting a new patient to establish care. A measure of perceived comfort caring for patients with disabilities was administered to students before and after the encounter. One year after the patient encounter, 59 students were surveyed about their satisfaction and the impact of the patient encounter. Results The impact of encountering people with disabilities in a clinical setting was positive, with statistically significant improvements across all items on the measure of perceived comfort. Students were highly satisfied with the experience and anticipated feeling more confident, more comfortable, less awkward, and more skilled and efficacious when encountering a person with a disability in their future practice. A thematic analysis of the one year follow-up data suggest that students valued the encounter and desired more content on disability throughout their education. Conclusions Medical education should include dedicated exposure to persons with disabilities and a simulated patient experience allowing for a safe environment to gain skills and confidence.

Direct support professionals (DSPs) are an essential part of the lives of people with intellectual and developmental disabilities (IDD). High rates of DSP turnover and vacancy have spurred much research into the occupational stress and burnout experienced by DSPs. There are, however, DSPs who remain motivated by and successful in the profession. Less research has been done on what makes these DSPs resilient to the same stressors that negatively affect other DSPs. The present study used the tenets of sensitivity theory to examine the relationships between motivation and outcome measures relevant to DSP success, namely vocational strain, depersonalization, and personal accomplishment. The motive of family related positively and vengeance related negatively with the three outcome variables. To a lesser extent, citizenship and social contact were positively related and prestige was negatively correlated with outcomes. The relevance of these findings and their potential applications to DSP recruitment and training are discussed.

Disability is common in reproductive-aged women, and as many as 1 in 8 pregnancies occur in women with a disability. Women with disabilities experience significant social and health disparities, and are at greater risk than their nondisabled counterparts for perinatal complications. Yet, few studies have examined their postpartum acute care use.To examine risks of postpartum emergency department visits and hospital admissions among women with and without physical, sensory, and intellectual/developmental disabilities.In this population-based study in Ontario, Canada, women with a singleton obstetrical delivery from 2003 to 2019 were classified into those with physical (n=155,500), sensory (n=49,338), intellectual/developmental (n=2650), and multiple disabilities (≥2 disabilities; n=9904), and women without disabilities (n=1,701,574). Primary outcomes were emergency department visits and hospital admissions 0 to 365 days after index delivery hospital discharge. Secondary outcomes were emergency department visits and hospital admissions by primary diagnosis (medical, psychiatric) and by timing (0-7, 8-42, 43-365 days postpartum). Adjusted relative risks comparing each disability group to those without disabilities were adjusted for age; parity; income quintile; rurality; immigrant/refugee status; prepregnancy chronic medical conditions, mental illness, and substance use disorders; and prenatal care provider type.Any postpartum emergency department visit occurred in 23.5% of women without a disability, with risks elevated in women with physical (32.9%; adjusted relative risk, 1.27; 95% confidence interval, 1.26-1.28), sensory (30.0%; adjusted relative risk, 1.16; 95% confidence interval, 1.15-1.18), intellectual/developmental (48.8%; adjusted relative risk, 1.38; 95% confidence interval, 1.33-1.44), and multiple disabilities (42.0%; adjusted relative risk, 1.44; 95% confidence interval, 1.41-1.48) compared with women without disabilities. Similarly, any postpartum hospital admission occurred in 3.0% of women without a disability, with elevated risks in women with physical (4.8%; adjusted relative risk, 1.37; 95% confidence interval, 1.34-1.40), sensory (4.0%; adjusted relative risk, 1.19; 95% confidence interval, 1.14-1.24), intellectual/developmental (9.6%; adjusted relative risk, 1.96; 95% confidence interval, 1.73-2.21), and multiple disabilities (7.3%; adjusted relative risk, 1.77; 95% confidence interval, 1.64-1.90). Results were consistent by primary diagnosis and timing in the postpartum period.Women with disabilities have elevated risk of emergency department visits and hospital admissions in the postpartum period, indicating greater postpartum morbidity, which requires attention through enhanced and extended follow-up across the postpartum period.

The Chronic Disease Self-Management Program (CDSMP) is an evidence-based program that is affective in managing chronic conditions and improving health outcomes in diverse populations; however, the program may not effectively reach the Deaf community. Deafness is associated with chronic health conditions and low health literacy, making a health education program such as CDSMP a good fit for this population. This study adapted and evaluated CDSMP in American Sign Language (ASL). The aims of this study were to (1) adapt the CDSMP curriculum for Deaf participants; (2) evaluate the program fidelity, participant satisfaction, and qualitative feedback; and (3) provide recommendations for improving the accessibility of CDSMP for the Deaf community. We evaluated the CDSMP program offered by lay leaders in ASL to Deaf participants. Program fidelity and participant satisfaction were high (93% and 88.9%, respectively). Qualitative feedback from participants and lay leaders informed implementation recommendations. Based on these findings, we offer 10 recommendations for offering CDSMP to the Deaf community. This study demonstrates that CDSMP can be successfully offered in ASL to Deaf participants with minimal adaptations. Offering CDSMP in ASL to accommodate Deaf learners promises to improve health outcomes in this vulnerable population.

BACKGROUND The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language impairment. On the other hand, the perspective of individuals with ID themselves is critical for internal subjective content such as thoughts and feelings. METHODS Participants were 90 adults with ID and a proxy of their choosing. RESULTS Overall, self and caregiver report were significantly related for subjective health but varied for physical activity, social support and stress. CONCLUSIONS These findings add to the growing literature establishing the importance of considering the self-report of adults with ID, particularity when the subject matter focuses on internal thoughts or feelings. Clinical considerations for the use of self and proxy report are discussed.

This article examines the effects of insurance type and Care Consistent with the Patient-Centered Medical Home (CC-PCMH) on health disparities between children with developmental disabilities (DD) and typically developing (TD) children. Data from a stratified random sample of Ohio households were used to compare children with DD (n = 419) to TD children (n = 7701) on health indicators including health status, utilization, quality, access, and unmet healthcare needs. Children with DD were more likely than TD children to have a fair or poor health status (27.7% vs. 1.1%; P

Mental illness, and its assessment and treatment, is a concern for caregivers and professionals working with people with intellectual disability (ID), as well as a cause of distress and disability ...

Direct support professionals (DSPs) play a large social role in the lives of people with developmental disabilities (DD) and have the potential to influence their health behaviors. Six qualitative focus groups (n = 48) were conducted with DD community agency administrators, DSPs, family members and adults with DD to better understand the perceived role of DSPs in the health promotion efforts of those with DD. Findings from this study suggest that DSPs experience several barriers when trying to promote the health of those with DD, one of which is fear of violating the rights of people with DD. Future work should identify ways to overcome the barriers experienced by DSPs, so that they can better assist people with DD with health promotion efforts.

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the “hidden majority.” Very little is known about the health and well-being of these adults. It remains to be seen if the hidden majority is comparably susceptible to mental health difficulties, given how little is known about this population by DD systems. The purpose of this manuscript is to highlight where one may identify individuals belonging to this hidden population and how researchers might effectively recruit from this group so as to ensure more representative samples of all people with IDD.

Our understanding of health has changed substantially since the World Health Organization initially defined health in 1948 as “a state of complete physical, mental and social and well-being and not merely the absence of disease or infirmity”. These changes include reconceptualizing health on a continuum rather than as a static state, and adding existential health to physical, mental, and social well-being. Further, good health requires adaptation in coping with stress and is influenced by social, personal and environmental factors. Building on prior work, we propose a reconsidered 2020 definition: “Health is the dynamic balance of physical, mental, social, and existential well-being in adapting to conditions of life and the environment.” Health is dynamic, continuous, multidimensional, distinct from function, and determined by balance and adaptation. This new definition has implications for research, policies, and practice, with particular relevance for health considered within a context of disability and chronic conditions.

We explored health care differences across the lifespan comparing people with developmental disabilities to people without developmental disabilities. Health care disparities are inequities occurring during the provision of and in access to health care that are experienced by socially disadvantaged populations. We discovered significant disparities between persons with and without developmental disabilities in health status, quality, utilization, access, and unmet health care needs. Our results highlight the need to educate health care clinicians on the care of patients with developmental disabilities of all ages.

Background Health care providers are unprepared to meet the health needs of patients who have disabilities. Disability training is needed, yet there is little agreement about what should be taught. Objective Establish a national consensus on what healthcare providers across disciplines need to know to provide quality care to patients with all types of disabilities (e.g., mobility, sensory, developmental, mental health). Methods People with disabilities, disability advocates, family members of people with disabilities, disability and health professionals, and inter-disciplinary health educators systematically evaluated and provided feedback on a draft set of disability competencies. Based on this feedback, competencies were iteratively refined. Results After two waves of feedback, six competencies, 49 sub-competencies, and 10 principles and values emerged that addressed topics such as respect, person-centered care, and awareness of physical, attitudinal, and communication health care barriers. An overwhelming majority (89%) agreed or strongly agreed that the disability competencies reflected the core understandings needed to provide quality care for patients with disabilities, were relevant across disability types (85%), and across health care disciplines (96%). Averaging evaluative feedback across competencies, participants reported that the competencies were important (98%) and clear (96%). Conclusions This consensus on what to teach is an important milestone in preparing a disability competent health care workforce. Future directions for research, training, and policy are discussed. When disability is included in health care education, the health care workforce will be prepared to deliver accessible, patient-centered, quality health care to patients with disabilities.

Background Women with disabilities experience significant health disparities. A barrier to progress in addressing these disparities is the lack of population-based data on their health outcomes, which are needed to plan health care delivery systems. Administrative health data are increasingly being used to measure the health of entire populations, but these data may only capture impairment and not activity and participation restrictions. Objective We conducted a systematic review to identify and appraise existing literature on the development and validation of algorithms to identify reproductive-aged women with physical and sensory disabilities in administrative health data. Methods We searched Medline, EMBASE, CINAHL, PsycINFO, and Scopus from inception to April 2019 for studies of the development and/or validation of algorithms using diagnostic, procedural, or prescription codes to identify physical and sensory disabilities in administrative health data. Study and algorithm characteristics were extracted and quality was assessed using standardized instruments. Results Of 14,073 articles initially identified, we reviewed 6 articles representing 2 unique algorithms. One algorithm aimed to correlate diagnoses, procedure codes, and prescriptions with ability to access routine care as an indicator of functional limitation. The other algorithm used diagnostic and procedure codes to identify use of mobility-assistive devices to measure functional limitation. Only one algorithm was validated against self-reported disability. Conclusions Our findings underscore the need to strengthen current methods to identify disability in administrative health data, including linkage with other sources of information on functional limitations, so that population-based data can be used to optimize health care for women with disabilities.