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BACKGROUND: Sensitivity theory proposes that there are wide individual differences in what motivates people with intellectual disability. The Reiss Profile MR/DD is a rating scale that measures 15 fundamental motives. This study examined the internal consistency and interrater reliability of the 15 subscales as well as the validity of motivational profiles. METHOD: The study consisted of two distinct but related steps. First, the interrater reliability of the rating scale was established by having pairs of raters evaluate 48 individuals. Second, raters were presented with three different motivational profiles and asked to identify which one corresponded to the individual they had rated 4 weeks earlier. RESULTS: Results indicated good internal consistency (average alpha=0.84), significant variability in the interrater reliability (average intraclass correlation coefficient=0.52), and excellent validity (95% of the correct profiles were chosen). Average discrepancies between pairs of raters are presented. CONCLUSIONS: Interrater reliability is an important topic for professionals working in the field of intellectual disability and results are discussed in terms of the factors that affect it. This is the first published study to report on the interrater reliability of the Reiss Profile MR/DD. [ABSTRACT FROM AUTHOR]

Americans with disabilities represent the largest historically underserved and marginalized health disparity population in the United States. This perspective piece will raise the awareness of physical therapist faculty and clinicians on gaps in health care provider knowledge about disability and provide actionable strategies, frameworks, and resources available to improve disability competence to make changes in clinical education and practice. In this perspective piece, 3 contributions are made. First, health disparities experienced by Americans with disabilities as a result of health care providers' biased assumptions about disability and lack of disability competence are described through an in-depth illustration of lived experiences of people with disabilities. Second, a discussion of disability competence in physical therapist education is provided. Finally, critical and evidence-based insights and actionable frameworks and resources to address disability competence training gaps and to promote anti-ableist practice are provided., (© The Author(s) 2024. Published by Oxford University Press on behalf of the American Physical Therapy Association. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice., (©AAIDD.)

Background: Physicians' erroneous assumptions about individuals with intellectual disability (ID) negatively impact the quality of care provided to this population. This study aimed to investigate the psychometric properties of the Beliefs About Adults with ID (BAID), an instrument we developed for measuring physicians' erroneous assumptions about adults with ID., Methods: Two hundred ninety-two American physicians participated. Classical test theory and Rasch measurement theory were used to refine the scale (through item analysis, exploratory factor analysis, infit and outfit mean-squares statistics, and differential item functioning) and investigate its psychometric properties (functioning of the response scale, reliability, and validity)., Results: The BAID provided a unidimensional, reliable, valid, and precise measure in assessing high levels of erroneous assumptions. It showed convergent and divergent validity with the different factors of a scale measuring attitudes towards ID. The BAID items were discriminant, non-redundant, unambiguous, and invariant across gender and previous ID training. The BAID response scale was found to be appropriate for measuring physicians' erroneous assumptions about adults with ID., Conclusions: BAID is a brief instrument with good psychometric properties to assess erroneous assumptions about adults with ID in physicians of different genders and who have/have not previously received ID training. Therefore, it might be helpful for research and medical education purposes., (© 2024 John Wiley & Sons and MENCAP.)

Purpose: The study purpose was to examine the effect of emotional support on the overall mental health and stress for caregivers of children with autism spectrum disorder (ASD)., Methods: A cross-sectional retrospective study using secondary data from the 2016-2019 National Survey of Children's Health was conducted using single variable and multivariable linear regression analyses., Results: More informal emotional support sources were associated with better overall mental health (β = 0.124, SE = 0.015, p < .001) and reduced stress (β = -0.261, SE = 0.039, p < .001) for caregivers of children with ASD, controlling for covariates. The number of formal emotional support sources was not significantly associated with caregiver overall mental health or stress when controlling for covariates. Increased amounts of total emotional support sources were significantly associated with increased overall mental health (β = 0.042, SE = 0.010, p < .001) and reduced stress (β = -0.093, SE = 0.024, p < .001) for caregivers. Other factors significantly associated with caregiver outcomes included caregiver sex, caregiver marital status, caregiver education level, economic hardship, child sex, child race/ethnicity, ASD severity, and child receipt of ASD treatment., Conclusion: More emotional support sources, in particular informal support sources, may be a protective factor for well-being for caregivers of children with ASD., Practice Implications: Health care providers should evaluate the impact of their formal support services on caregivers of children with ASD and advocate for increased informal and formal support resources for these caregivers., Competing Interests: Declaration of competing interest We have no known conflict of interest to disclose., (Copyright © 2024. Published by Elsevier Inc.)

Lack of disability-competent health care contributes to inequitable health outcomes for the largest minoritized population in the world: persons with disabilities. Health care professionals hold implicit and explicit bias against disabled people and report receiving inadequate disability training. While disability competence establishes a baseline standard of care, health professional educators must prepare a disability conscious workforce by challenging ableist assumptions and promoting holistic understanding of persons with disabilities. Future clinicians must recognize disability as an aspect of diversity, express respect for disabled patients, and demonstrate flexibility about how to care for disabled patients' needs. These skills are currently undervalued in medical training, specifically. This article describes how integrating disability consciousness into health professions training can improve health equity for patients with disabilities., (Copyright 2024 American Medical Association. All Rights Reserved.)

Disabled people, and particularly people with intellectual disability and autism spectrum disorder, experience significant health disparities compared to nondisabled people. These disparities are not explained by the underlying disabling condition but, rather, by unfair and avoidable conditions. One prevailing condition, implicit bias and discrimination against disabled patients in the healthcare sector, limits quality of care and health outcomes for this population. Most healthcare professionals have strong implicit bias against disabled people, which negatively impact clinical decision-making and the behavior of healthcare professionals toward disabled patients. For example, most healthcare providers believe that disability confers poor quality of life. According to quality of life research with disabled people, this belief is false and damaging. Because training programs fail to challenge implicit biases and damaging beliefs about disability, healthcare providers are not prepared to provide quality health care to disabled patients. Including disabled people in didactic and clinical training as instructors, members of panels, and as healthcare students is the first essential step to preparing a disability competent healthcare workforce.

Aim: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives., Design: A qualitative study with semi-structured interviews., Methods: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth. Thematic analysis was used identify common themes., Results: We identified three overall themes concerning participants' postpartum care experiences and the different types of formal services received in and out of hospital: (1) lack of adequate care, (2) lack of provider awareness of disability and disability accommodations, and (3) fear of judgement, discrimination, and intrusive surveillance. The identified themes were applicable across disability groups. However, most comments on disability accommodations came from participants with physical or sensory disabilities, while participants with intellectual/developmental disabilities most commonly reported concerns about lack of adequate care and fear of judgement, discrimination, and intrusive surveillance., Conclusion: Findings indicate that postpartum care often fails people with disabilities. This could contribute to negative health consequences for them and their newborns., Impact: Birthing people with disabilities need multidisciplinary, proactive, and strengths-based postpartum care to mitigate risk for health complications. Further, disability-related training and guidelines for health and social service providers is required., Reporting Method: Consolidated criteria for reporting qualitative research (COREQ)., Patient or Public Contribution: Our research team included two peer researchers with physical disabilities who served as co-interviewers and participated in data analysis, contributing their lived experience of disability and interactions with the health care system. All stages of the study were also informed by feedback from the study's Advisory Committee, which comprised women with disabilities (many of whom are parents), disability organization staff, clinicians, and policy representatives., (© 2023 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Importance: Emergency department (ED) use in pregnancy is common and occurs for a variety of reasons, including obstetrical complications, exacerbated underlying conditions, and inadequate outpatient health care access. People with disabilities have elevated rates of certain medical, psychiatric, and obstetrical conditions as well as inadequate access to prenatal care; their risk of ED use in pregnancy is not known, however., Objective: To compare the risk of ED use in pregnancy among people with physical, sensory, and intellectual or developmental disabilities with those without disabilities., Design, Setting, and Participants: Population-based cohort study leveraging linked administrative health data sets in Ontario, Canada, April 2003 to March 2019. Analysis included all recognized pregnancies to people with a preexisting physical, sensory, intellectual or developmental, or 2 or more (multiple) disabilities, and those without a disability. Data were analyzed from May 2022 to January 2023., Exposure: Disability was ascertained using algorithms applied to 2 or more outpatient physician visits or 1 or more ED visits or hospitalizations before conception., Main Outcomes and Measures: Modified Poisson regression-generated adjusted relative risks (aRR) and 95% CIs for any ED visit in pregnancy, from the estimated conception date up to the end of the pregnancy, adjusted for age, parity, income quintile, rurality, immigrant status, and preexisting chronic conditions, mental illness, and substance use disorders., Results: The cohort included 2 659 895 pregnant people with physical (221 739 participants; mean [SD] age, 29.8 [6.1] years), sensory (71 891 participants; mean [SD] age, 29.1 [6.4] years), intellectual or developmental (3877 participants; mean [SD] age, 26.1 [6.7] years), and multiple disabilities (14 359 participants; mean [SD] age, 29.5 [6.5] years), and pregnant people without a disability (2 348 023 participants; mean [SD] age, 29.4 [5.9] years). The rate of ED visits in pregnancy was 25.4% in people without a disability (596 771 visits). Relative to these individuals, the aRR for ED use was elevated in people with physical (aRR, 1.26; 95% CI, 1.25-1.27), sensory (aRR, 1.15; 95% CI, 1.14-1.17), intellectual or developmental (aRR, 1.33; 95% CI, 1.28-1.38), and multiple disabilities (aRR, 1.43; 95% CI, 1.40-1.46)., Conclusions and Relevance: In this population-based study, people with disabilities were at elevated risk of ED use in pregnancy. This finding underscores the need for research on the benefits of proactive strategies to manage preexisting conditions in these individuals, improve their access to outpatient obstetrical and medical care, and prepare them for when ED visits occur.

We describe the disability-related education and training experiences of perinatal care providers in Ontario. Twenty perinatal care providers (e.g., obstetricians, midwives) participated in semi-structured interviews. Using a content analysis approach, we found most acquired disability-related training through their own initiative as opposed to education through professional training programs. Barriers to training included lack of data on disability and pregnancy and limited experiential learning opportunities. Providers recommended that future training focus on experiential learning and social determinants of health, with people with disabilities involved in developing and delivering training. These efforts are vital to optimize pregnancy outcomes for people with disabilities., (Copyright © 2023 The Society of Obstetricians and Gynaecologists of Canada/La Société des obstétriciens et gynécologues du Canada. Published by Elsevier Inc. All rights reserved.)

Background: Pregnancy and the postpartum period are a high-risk time for venous thromboembolism (VTE). Decreased mobility is also a major risk factor. However, the risk of peripregnancy VTE among individuals with physical disabilities is unknown., Objectives: To compare the risk of peripregnancy VTE between people with a physical disability and those without a physical disability., Methods: This population-based cohort study comprised all births in Ontario, Canada, from 2007 to 2018. Physical disability was defined as a condition diagnosed before conception that was likely to result in restricted mobility. Modified Poisson regression was used to compare the risk of VTE during pregnancy and up to 6 weeks postpartum between people with a physical disability and those without a physical disability. Adjusted relative risks (aRRs) were calculated, controlling for demographics, history of VTE, thrombophilia, and other comorbidities. An additional analysis was used to evaluate the risk of peripregnancy VTE among people with physical disabilities who used a mobility aid., Results: Of 1 220 822 eligible people, 13 791 (1.1%) had a physical disability. VTE occurred during pregnancy or up to 6 weeks of the postpartum period in 0.85% of the individuals with a physical disability and 0.47% of those without a physical disability (aRR, 1.52; 95% CI, 1.26-1.83). The rate of VTE was notably higher in those with a physical disability requiring a mobility aid (3.0%), generating an aRR of 3.05 (95% CI, 1.45-6.41), than in those without a physical disability., Conclusion: Pregnant people with a physical disability, especially those using a mobility aid, are at an increased risk of VTE. Anticoagulant prophylaxis could be considered in this group, especially in the presence of additional risk factors., (Copyright © 2023 International Society on Thrombosis and Haemostasis. Published by Elsevier Inc. All rights reserved.)

Background: Incomplete knowledge and unfamiliarity with intellectual disability (ID) contribute to erroneous assumptions of physicians towards ID, which negatively impact the health equity of people with ID. This study aimed to identify the erroneous assumptions that, based on the ID stakeholders' perceptions, were the most prevalent in physicians and damaging for the healthcare of adults with ID, verify their unidimensionality and that no personal characteristics of ID stakeholders were associated with their ratings of erroneous assumptions' prevalence and damage., Methods: Seventy-four possible physician erroneous assumptions were developed concerning health, daily living skills and quality of life of individuals with ID. ID stakeholders rated each one for perceived prevalence in physicians and damage for the healthcare of adults with ID. Frequency analysis, exploratory factor analysis and correlations were run separately for participants' prevalence and damage ratings., Results: Twenty-seven erroneous assumptions were identified as those perceived most prevalent and damaging. Their unidimensionality was ascertained and participants' characteristics were not associated with their prevalence and damage ratings., Conclusions: The identified assumptions are appropriate to represent the items of a new instrument that can be used in medical education to guide the development of curricula to change erroneous assumptions., (© 2023 The Authors. Journal of Intellectual Disability Research published by MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Objective: To explore the care experiences of childbearing people with physical, sensory, and/or intellectual/developmental disabilities during pregnancy., Design: Descriptive qualitative., Setting: Ontario, Canada, where physician and midwifery care during pregnancy are provided at no direct cost to residents., Participants: Thirty-one people with physical, sensory, and/or intellectual/developmental disabilities (who self-identified as cisgender women [n = 29] and trans or nonbinary persons [n = 2]) who gave birth in the last 5 years., Methods: We recruited childbearing people with disabilities through disability and parenting organizations, social media, and our team's networks. Using a semistructured guide, we conducted in-person and virtual (e.g., telephone or Zoom) interviews with childbearing people with disabilities in 2019 to 2020. We asked participants about the services they accessed during pregnancy and if services met their needs. We used a reflexive thematic analysis approach to analyze interview data., Results: Across disability groups, we identified four common themes: Unmet Accommodation Needs, Lack of Coordinated Care, Ableism, and Advocacy as a Critical Resource. We found that these experiences manifested in unique ways based on disability type., Conclusion: Our findings suggest the need for accessible, coordinated, and respectful prenatal care for people with disabilities, with the requirements of such care depending on the needs of the individual person with a disability. Nurses can play a key role in identifying the needs and supporting people with disabilities during pregnancy. Education and training for nurses, midwives, obstetricians, and other prenatal care providers should focus on disability-related knowledge and respectful prenatal care., (Copyright © 2023 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses. Published by Elsevier Inc. All rights reserved.)

Background: Adults with intellectual disability (ID) are both underrepresented in research and enrolled in studies they may not understand. Instead of facilitating research engagement, the informed consent process often fails to elucidate its essential elements., Aims: We evaluated whether a novel informed consent process was more effective than current practice at helping adults with ID understand key elements of research., Methods and Procedures: 21 adults with ID completed a novel iterative teaching process (ITP) for teaching and assessing informed consent. The ITP was used to compare the baseline (Conventional) approach to an Easy Read and a Conversational approach. Participants were asked a series of questions to assess their attitudes toward, and their comprehension of, the materials., Outcomes and Results: The pilot found encouraging evidence for the efficacy and feasibility of the ITP. The two novel ITP approaches were both superior to current practice., Conclusions and Implications: This project contributes to a growing literature by introducing a process for teaching and evaluating informed consent. Results indicate that comprehension of informed consent materials can be taught to, and learned by, adults with ID with proper accommodations., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

Background: 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., Methods: This population-based cohort study was done in Ontario, Canada. We accessed and analysed health administrative data from ICES and the Better Outcomes Registry & Network. 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., Findings: 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., Interpretation: 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., Funding: National Institutes of Health and the Canada Research Chairs Program., Competing Interests: Declaration of interests SNV receives royalties from UpToDate for authorship of materials related to depression and pregnancy. All other authors report no competing interests., (Copyright © 2023 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

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&gt;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., Competing Interests: Financial Disclosure Natasha Saunders receives an honorarium from the BMJ Group (Archives of Diseases in Childhood). Simone N. Vigod receives royalties from UpToDate for authorship of materials related to depression and pregnancy. The other authors did not report any potential conflicts of interest., (Copyright © 2022 by the American College of Obstetricians and Gynecologists. Published by Wolters Kluwer Health, Inc. All rights reserved.)

Purpose: 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., Methods: 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., Results: 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)., Conclusion: 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., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany.)

Background: 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., Aims: 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)., Methods and Procedures: 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., Outcomes and Results: The resulting measures are useful (independently completed) and usable (elicit a range of responses), with modest reliability (internal consistency and test-retest)., Conclusions and Implications: 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., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

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 <37 and <34 weeks, small for gestational age birth weight (SGA), large for gestational age birth weight, neonatal morbidity, and mortality, neonatal abstinence syndrome (NAS), and NICU admission. Relative risks were adjusted for social, health, and health care characteristics., 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 <37 weeks (1.37, 95% confidence interval 1.19-1.58), SGA (1.37, 1.24-1.59), neonatal morbidity (1.42, 1.27-1.60), NAS (1.53, 1.12-2.08), and NICU admission (1.53, 1.40-1.67). The same was seen for newborns of women with ≥2 disabilities, including preterm birth <37 weeks (1.48, 1.39-1.59), SGA (1.13, 1.07-1.20), neonatal morbidity (1.28, 1.20-1.36), NAS (1.87, 1.57-2.23), and NICU admission (1.35, 1.29-1.42)., 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., (Copyright © 2022 by the American Academy of Pediatrics.)

Background: 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., Objective: To examine risks of postpartum emergency department visits and hospital admissions among women with and without physical, sensory, and intellectual/developmental disabilities., Study Design: 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., Results: 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., Conclusion: 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., (Copyright © 2022 Elsevier Inc. All rights reserved.)

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., (© 2022 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC.)

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., (© 2021 John Wiley & Sons Ltd.)

Background: Attitudes of physicians toward intellectual disability (ID) impact access and quality of the health care services provided to individuals with ID. Attitudes are conceptualized as composed of cognitive, affective, and behavioral dimensions. However, research on attitudes toward ID frequently neglects to define the underlying theoretical framework. This work aimed to review research over the past 20 years on physicians' attitudes toward and health care practices for individuals with ID. Findings are reported on the cognitive, affective, and behavioral dimensions of attitudes., Methods: A systematic review was conducted following the PRISMA guidelines. Articles published in English between 2000 and October 2021 were searched in Scopus and Web of Science. Descriptive statistics and frequencies were used to describe the attitudes of physicians., Results: A total of 14 studies were included in the review. Considering the cognitive dimension of attitudes, physicians had a medium to good but almost always incomplete knowledge of ID and its associated conditions, rights and capabilities of individuals with ID, and health care practices for this population. Concerning the affective dimension, approximately half of physicians expressed feelings of pity, unsatisfaction, frustration, discomfort, and lack of confidence. With respect to the behavioral dimension of attitudes, approximately half of physicians preferred to avoid patients with ID., Conclusions: Physicians' attitudes are rather complex. From this work emerges a clear need to change these generally unfavorable attitudes, especially in the aspects regarding emotions and behaviors, to provide better health care to individuals with ID. Educational and training programs on ID for physicians should be developed to improve attitudes toward ID and consequently foster the wellbeing of this population.

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., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Problem: Caregivers of children with Autism Spectrum Disorder (ASD) report high levels of stress, social isolation, and poor mental health. Social and emotional support may buffer negative effects of stress for caregivers of children with ASD, however, those living in rural areas may be disadvantaged due to social isolation and increased distance from resources. This scoping review examined the literature regarding the mental health and impact of support for rural caregivers of children with ASD., Eligibility Criteria: Articles were limited to those available in the English language and conducted in a high income country. Articles had to include a population of rural caregivers of children with ASD and focus on caregiver mental health and/or the impact of support on caregiver mental health., Sample: Searches were conducted with Embase, PubMed, CINAHL, ERIC, and PsycINFO and 22 articles were included., Results: Study findings indicate overall poor mental health for rural caregivers of children with ASD. Formal and informal support appear to be beneficial in decreasing stress for rural caregivers of children with ASD. However, a few studies indicated that formal support may add stress to rural caregivers., Conclusion: There is limited information regarding support needs and the impact of support services on the mental health of rural caregivers of children with ASD., Implications: There is a need to increase access to support resources in rural areas for caregivers of children with ASD. Healthcare professionals, including nurses, can play a fundamental role in supporting, educating, and connecting caregivers to other support services., (Copyright © 2021 Elsevier Inc. All rights reserved.)

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., (Copyright © 2021 Jacobs Institute of Women's Health. Published by Elsevier Inc. All rights reserved.)

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., Competing Interests: Conflicts of interest Authors have no conflicts of interest to disclose., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

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., (©AAIDD.)

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.

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., Competing Interests: Declaration of competing interest The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services., (Copyright © 2020 The Author(s). Published by Elsevier Inc. All rights reserved.)

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., Competing Interests: Declaration of competing interest The authors report no conflicts of interest., (Copyright © 2020 Elsevier Inc. All rights reserved.)

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.

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.

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., (Copyright © 2020. Published by Elsevier Ltd.)

People with disabilities make up the largest minority population in the country, yet our health care workforce is unprepared to meet their needs. Two initiatives - and the Alliance for Disability in Health Care Education's Disability Competencies and the Resources for Integrated Care Disability-Competent Care model-provide essential tools to build a health care workforce prepared to meet the health needs of people with disabilities. We note gaps in health education and continuing education curricula, document barriers to progress, and demonstrate how the two initiatives offer a clear roadmap to effect systemic change. Finally, we issue a call to action for health care education, practice, and research to ensure a health care workforce prepared to provide quality health care to people with disabilities., Competing Interests: Declaration of competing interest The authors have no conflicts of interest to report., (Copyright © 2020 Elsevier Inc. All rights reserved.)

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., Competing Interests: Declaration of competing interest Coleen Boyle: no conflicts of interest or outside funding Michael Fox: no conflicts or outside funding Susan Havercamp: I do not have any conflicts of interest to disclose. I would like to acknowledge support from CDC: Susan Havercamp’s effort on this article was supported by the Cooperative Agreement Number, NU27DD000015-02, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services. Jennifer Zubler: no conflicts of interest or outside funding, (Copyright © 2020 Elsevier Inc. All rights reserved.)

Background: People with disabilities disproportionately use tobacco and suffer associated negative health consequences. Research is needed to explore tobacco cessation programming for people with disabilities to counter these health disparities., Objective: We evaluated the impact of Living Independent From Tobacco on tobacco use, knowledge and attitudes about tobacco use, coping skills, and perceived health status among people with disabilities. We also assessed participants' subjective impressions at post-test., Methods: Living Independent From Tobacco was evaluated via train the trainer model at three Midwestern sites serving people with disabilities. Outcomes were assessed at four time points: pre- and post-test (n = 30), and again at 1-month (n = 26) and 6-months (n = 13)., Results: Long-term tobacco users with disabilities significantly reduced tobacco use from pre-test to post-test (p = 0.003), and, compared to baseline, this reduction continued to be significant 1-month after the intervention (p = 0.02). From pre-test to post-test, perceived health status significantly improved (p = 0.0001). No significant changes were observed across time points for knowledge and attitudes about tobacco use nor for coping skills. Qualitative data revealed the importance of coping skills to mitigate the negative effects of nicotine withdrawal. Peer accountability was also noted as an important source of motivation for tobacco cessation., Conclusions: Data from the present study provide evidence for the short-term effectiveness of Living Independent From Tobacco to reduce tobacco use and improve health status among people with disabilities. Qualitative data revealed the importance of coping skills and peer accountability to support tobacco cessation. Implications for tobacco cessation programming for people with disabilities are discussed., Competing Interests: Declaration of competing interest The authors report no conflicts of interest., (Copyright © 2019 Elsevier Inc. All rights reserved.)

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., (Copyright © 2020 Elsevier Inc. All rights reserved.)

People with disabilities have more health complications and higher healthcare utilization related to tobacco use than people without disabilities. Yet, they are less likely to use tobacco cessation resources. Important to meaningful and lasting health behavior change are relationships developed in the home, workplace, and community. Some people with disabilities rely on paid and unpaid caregivers. Just like people with disabilities, paid caregivers are more likely to use tobacco, creating a unique opportunity to target smoking cessation to people with disabilities and their caregivers. Living Independent From Tobacco (LIFT), an evidence-based tobacco cessation intervention, was implemented with dyads of people with disabilities (n = 5) and their caregivers (n = 7). Qualitative analyses revealed that participants valued the dyadic approach and the opportunity to learn coping skills to help with smoking cessation. Lessons for offering inclusive health promotion interventions to people with disabilities and their caregivers are discussed., (©AAIDD.)

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 health impacts of caring for people with mental illness (MI) and developmental disabilities (DD) are not well understood., Objective: The present study explored whether health outcomes differed between MI and DD caregivers, and if intensity and duration of care moderated health outcomes., Methods: Nationally representative 2016 Behavioral Risk Factor Surveillance System survey data were used to explore how caring for people with MI (n = 1071) and DD (n = 888) impacted general health status and physical and mental health days, and whether intensity and duration of care moderated health outcomes. Logistic regression models and cumulative logistic regression models were used to model health outcomes., Results: Caregivers had worse health (p = 0.0001) and more poor physical (p < 0.0001) and mental health days (p < 0.0001) than non-caregivers. Relative to DD caregivers, MI caregivers had worse health status (p = 0.02) and more poor physical (p = 0.02) and mental (p = 0.003) health days. As intensity of care increased, MI caregivers had more poor physical health days (p = 0.04) than DD caregivers and as duration of care increased, MI caregivers had worse health status (p = 0.03) than DD caregivers., Conclusions: Although the care provided to adults with DD was more intense and for a longer duration, MI caregivers had poorer health outcomes and were more impacted by intensity and duration of care. Implications for supporting MI and DD caregivers are discussed., (Copyright © 2019 Elsevier Inc. All rights reserved.)

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., (© 2019 John Wiley & Sons Ltd.)

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.

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey. We identify core constructs that must be measured to identify sample members with IDD in population surveys, and additional constructs which, if measured, would support more comprehensive identification of sample members and enhance ongoing surveillance of the health status, outcomes, and unmet needs of this population. We conclude with a brief review of methodological considerations to improve IDD national surveillance including cultural and linguistic sensitivity and the inclusion of U.S. territories in national surveillance protocols.

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., (© 2019 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)