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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. [ABSTRACT FROM AUTHOR]

The article presents the discussion on increasing the understanding of health inequities and approaches in improving health care for people with intellectual and developmental disabilities (IDD). Topics include describing health and healthcare inequities for children and adults with IDD, arguing the quest in improving healthcare quality; and accessing health care, high rates of unmet health care needs, and dissatisfaction.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Adults with developmental disabilities face barriers to making healthy lifestyle choices that mirror the barriers faced by the direct support professionals who serve them. These two populations, direct support professionals and adults with developmental disabilities, are likely to lead inactive lifestyles, eat unhealthy diets, and be obese. Moreover, direct support professionals influence the nutrition knowledge, attitudes, and health behaviors of the adults with developmental disabilities whom they serve. We piloted a cooking-based nutrition education program, Cooking Matters for Adults, to dyads of adults with developmental disabilities (n = 8) and direct support professionals (n = 7). Team-taught by a volunteer chef and nutrition educator, Cooking Matters for Adults uses an active learning approach to teach food preparation safety skills and nutrition knowledge to inform healthy food and beverage choices. We assessed healthy food preparation, intake of a balanced diet, healthy food and beverage choices, and cooking confidence and barriers at pre-test, post-test, and 6-months after the intervention. Among both adults with developmental disabilities and direct support professionals, positive trends in healthy food preparation, eating a balanced diet, and reduction in cooking barriers were observed at post-test and 6-months. We also qualitatively assessed knowledge of and attitudes toward healthy eating, frequency of food and beverage intake, knowledge about kitchen skills and safety, as well as overall satisfaction, cooking confidence, and acceptability of the dyad approach. Participants with developmental disabilities and direct support professionals reported that they learned about healthy food and beverage choices and various cooking skills. Participants reported confidence in skills learned and were satisfied with the intervention and approach of including adults with developmental disabilities and direct support professionals in the intervention together. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 for people with ID. Research in this area is hindered by difficulties associated with recognizing symptoms of mental illness and tracking their changes. The use of empirically derived and tested tools can improve clinical and research outcomes. This study compares proxy reports of mental health symptoms using the Psychiatric Assessment Schedules for Adults with Developmental Disabilities (PAS-ADD) Checklist to self-reported symptoms using an interview form of the Brief Symptom Inventory (BSI). While the two scales were statistically correlated, clinically they presented very differently. The PAS-ADD identified 23.6% of participants as scoring in the at-risk category of mental health symptoms, while self-rating of symptoms on the BSI resulted in 67.8% of participants scoring above the cutoff. Concerns regarding the use of the BSI for a wide range of people with ID are discussed, as well as the concerns of using proxy report for subjective topics such as mental health symptoms. [ABSTRACT FROM AUTHOR]

A speech is presented by Dr. Susan M. Havercamp, president of American Association on Intellectual and Developmental Disabilities. Topics discussed include maintenance of regional connections and leadership roles in the field of intellectual and developmental disabilities; promoting health and wellness among people with intellectual and developmental disabilities; and designing of social and environmental interventions for promoting the same.

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. We evaluated whether a novel informed consent process was more effective than current practice at helping adults with ID understand key elements of research. 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. The pilot found encouraging evidence for the efficacy and feasibility of the ITP. The two novel ITP approaches were both superior to current practice. 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. • Current informed consent practices can present barriers to research participation. • Novel consent processes were used for teaching and evaluating capacity to consent. • Novel approaches were both superior and preferred to current practice. • Adults with intellectual disability can be taught informed consent concepts. • Improved comprehension of consent process lowers barriers to inclusion in research. [ABSTRACT FROM AUTHOR]

People with autism spectrum disorder (ASD) and other developmental disabilities have poorer health and face unique barriers to health care compared to people without disabilities. These health disparities can be partially attributed to physicians' limited knowledge about caring for patients with developmental disabilities. The purpose of this study was to determine the effectiveness of ASD training for medical students. Our training included a lecture and a panel presentation that featured people with ASD and family members. Students reported improved knowledge, skills, confidence, and comfort in caring for patients with ASD. [ABSTRACT FROM AUTHOR]

People with intellectual disability (ID) experience high rates of chronic health problems and poor overall health compared to people without disabilities. Recent attention to health risk behaviors such as poor diet, lack of physical activity, and underuse of health care has led to the development of several programs intended to reduce disparities in this population through health promotion programs. A review of the literature was conducted focusing on programs developed to target behavioral changes in the person with ID. Thirteen studies, evaluating 10 different health promotion programs, were found. Programs varied significantly in design, targeted health change, and demonstrated effectiveness. Components of each program are systematically reviewed and recommendations made for future programs based upon the current evidence. [ABSTRACT FROM AUTHOR]

People with intellectual disability (ID) were once considered immune to developing psychopathology, including affective disorders such as depression. Now research has shown that people with ID do suffer from depression, and the focus is on understanding how to best diagnose and provide treatment. Research has come a long way in adapting the diagnostic process for people with mild/moderate deficits in intellectual functioning and communication abilities. However, there is a lack of research and clinical understanding regarding how to assess depression in people who lack communication skills and function with severe or profound deficits in intellectual functioning. This paper reviews the available literature on the occurrence of depression in people with ID, specifically those with more significant deficits, and discusses the difficulties that arise in trying to determine a diagnosis of depression for this population. [ABSTRACT FROM PUBLISHER]

Research has documented disparities in health care and access for people with intellectual and developmental disabilities (IDD) and people in racial and ethnic minority groups. Though both populations are underserved, the additive impact of being both a member of a racial/ethnic minority and having IDD is largely unknown. This study uses data from a nationally representative survey to explore health service utilization among adults with IDD belonging to minority racial/ethnic groups compared to adults with IDD who are White. The results of this study indicated that racial/ethnic minority groups are disadvantaged in several essential areas of health care utilization and that Hispanic Americans are particularly underserved. Additional research is needed to identify and address the factors driving this difference. [ABSTRACT FROM AUTHOR]

Maslow's hierarchy implies that human growth is associated with adult maturity, a decrease in the prepotency of "lower" motives and an increase in the prepotency of "higher" motives. These hypotheses were evaluated with data from 1,712 participants who had been tested with the Reiss Profile, which is a standardized assessment of a comprehensive range of enduring (trait) strivings. The results provided some support for Maslow's general idea of human growth: The lower motives (such as eating and exercise) were stronger for younger versus older adults, whereas the higher motives (such as honor and idealism) were stronger for older versus younger adults. The results demonstrated a new method for studying some of the issues raised by Maslow. [ABSTRACT FROM AUTHOR]

Objectives. The purposes of this study were (1) to identify disparities between adults with developmental disabilities and non-disabled adults in health and medical care, and (2) to compare this pattern of disparities to the pattern of disparities between adults with other disabilities and adults without disabilities. Methods. The authors compared data on health status, health risk behaviors, chronic health conditions, and utilization of medical care across three groups of adults: No Disability, Disability, and Developmental Disability. Data sources were the 2001 North Carolina Behavioral Risk Factor Surveillance System and the North Carolina National Core Indicators survey. Results. Adults with developmental disabilities were more likely to lead sedentary lifestyles and seven times as likely to report inadequate emotional support, compared with adults without disabilities. Adults with disabilities and developmental disabilities were significantly more likely to report being in fair or poor health than adults without disabilities. Similar rates of tobacco use and overweight/obesity were reported. Adults with developmental disabilities had a similar or greater risk of having four of five chronic health conditions compared with non-disabled adults. Significant medical care utilization disparities were found for breast and cervical cancer screening as well as for oral health care. Adults with developmental disabilities presented a unique risk for inadequate emotional support and low utilization of breast and cervical cancer screenings. Conclusions. Significant disparities in health and medical care utilization were found for adults with developmental disabilities relative to non-disabled adults. The National Core Indicators protocol offers a sound methodology to gather much-needed surveillance information on the health status, health risk behaviors, and medical care utilization of adults with developmental disabilities. Health promotion... [ABSTRACT FROM AUTHOR]

The article focuses on strategies of the American Association on Mental Retardation (AAMR) relating to student involvement and cultivating future leadership in the field of mental retardation. The association offers reduced membership dues and conference rates for students and recognizes leadership potential with a Student Award. AAMR presidents host receptions for students to meet the AAMR leadership at the annual AAMR meetings. AAMR has also established a committee to serve the interests of students and young professionals.

Sensitivity theory provides an analysis of personality based on what people say motivates their behavior. After Reiss and Havercamp (1998) confirmed a 15-factor solution to self-reported human strivings, the Reiss Profile of Fundamental Goals and Motivation Sensitivities (Reiss & Havercamp, 1998) psychometric instrument was standardized. In 3 studies, the Reiss Profile was shown to possess good test-retest and internal reliability and concurrent and criterion validity. Ten independent samples of adults (n = 764) and a comparison group (n = 737) participated in these studies. Pearson product-moment correlations between the Marlowe-Crowne Social Desirability Scale (Crowne & Marlowe, 1960) and the Reiss Profile ranged in absolute value from .01 to .39 (M = .16). How people self-reported their trait motives correlated with how they behaved in the "real world." The Reiss Profile can be used to study motivational traits. [ABSTRACT FROM AUTHOR]

Health represents the dynamic balance of physical, mental, social, and existential well‐being in adapting to conditions of life and the environment. Health is essential for the quality of life (QoL) of all individuals, including those with intellectual disability (ID). People with ID experience health inequities and barriers to quality health care that must be addressed to foster the QoL of this population. This paper illustrates how poor health negatively impacts each of the eight domains of the QoL model proposed by Shalock and Verdugo (2002) (e.g., health conditions limit work performance, decreasing opportunities for personal development and self‐determination). Suggestions for healthcare practices and behaviors that would improve the quality of healthcare provided to people with ID, and thus their health and QoL, are offered (e.g., engaging people with ID in the medical conversation, talking to them in plain language and without jargon enhances the personal development, self‐determination, interpersonal relationships, and social inclusion domains of QoL). Finally, we suggest actions that people with ID and their families might implement to maximize their health and wellness (e.g., maintaining a healthy lifestyle, and using the health promotion resources provided by disability organizations). [ABSTRACT FROM AUTHOR]

Tests the factorial stability of the Reiss Screen for Maladaptive Behavior. Demonstration of reasonable fit; Sample of individuals different mental retardations; Confirmation of Reiss factor solution.

Develops psychological instruments to provide a comprehensive assessment of the strength of a person's fundamental end goals and motivational sensitivities. Two categories wherein human motives can be divided; Methods used in the study; Discussion of the results.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

IntroductionMethodResultsConclusionThe current study obtained perspectives on psychotherapy practices from adults with intellectual disability receiving psychotherapy and mental health clinicians serving adults with intellectual disability. The goal was to identify opportunities, successes, and challenges through the perspective of adults with intellectual disability who have received mental health treatment (i.e. clients) and clinicians providing psychotherapy.A total of six virtual focus groups, three with clinicians and three with clients with intellectual disability who had experience with psychotherapy, were conducted. Transcripts were coded by two independent reviewers guided by grounded theory.Broadly, analyses indicated overlapping themes with rich perspectives from both groups. Both clinicians and clients with intellectual disability identified a number of key aspects that were perceived as foundational to therapy and to improving the therapeutic relationship and comfort of the client with intellectual disability. Themes related to rapport building and self-determination emerged, despite not being directly asked of either group. Both clinicians and clients with intellectual disability discussed the therapeutic process at length, related to general types of treatment modality as well as the importance of individualizing treatment strategies. Clinicians spoke of regularly making accommodations to increase treatment accessibility.The focus group results align with and supplement treatment outcome research and have implications for training, practice, and future research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

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. [ABSTRACT FROM AUTHOR]

The authors assessed available prevalence information regarding neuropsychiatric conditions among adults with Down syndrome (DS) and compared these findings among adults with other intellectual disability (non-DS). The study entailed a survey of 291 adults with DS living in Ohio (USA). Twenty-three percent of adults with DS reported having a co-occurring psychiatric disorder, a smaller than the reported occurrence of such conditions in the general adult intellectual disability population. Depression, anxiety disorders, and dementia or Alzheimer's disease were the most frequently reported neuropsychiatric disorders by adults with DS. The likelihood of experiencing a psychiatric disorder increased with age but did not vary by sex among adults with DS. Lower rates of problem behavior were reported in adults with DS compared to adults with intellectual disability (non-DS). The authors' findings indicate that adults with DS may present different rates and types of co-occurring psychiatric disorders than the larger population of adults with other intellectual disability. These findings warrant additional research and could provide critical information for planning and intervention. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Collecting self‐reported health and quality of life (QoL) outcomes is increasingly considered best practice, but people with intellectual and developmental disabilities (IDD) are often excluded from patient‐reported outcome measures. Objective: This article provides a literature‐informed overview of the state of the field of self‐reporting of physical health and QoL in research with adults with IDD. Approach: We first identified and synthesized definitions of key constructs related to the self‐reporting of health. Next, we summarize literature on existing and emerging practices focused on health and QoL assessment, discussing the frequent and sometimes overly broad use of proxy‐respondents in the IDD field. We then highlight emerging directions focused on cognitive accessibility and universal design. Finally, we provide conclusions and recommendations for the field. Conclusions: Informed by the literature, we provide action steps to guide the field in considering how to incorporate self‐reporting of health outcomes by people with IDD in research, policy, and practice. [ABSTRACT FROM AUTHOR]

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). 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. 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. 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. [ABSTRACT FROM AUTHOR]

The parents of 601 children and adolescents, responding to a mail survey, rated their children on the Aberrant Behavior Checklist-Community (ABC-C). Factor analysis of ABC-C ratings revealed a factor structure that was similar to the original ABC but without the fifth factor (Inappropriate Speech). Coefficients of congruence were moderate to large for the four-factor model, and alpha coefficients were moderate to high when the original item assignment was imposed. Confirmatory factor analysis indicated a modest level of fit with the traditional method of scoring the ABC and acceptable fit when the items were coded for occurrence (0 or 1). Analysis of subject variables revealed main effects for gender on one subscale (Hyperactivity), main effects for age on two subscales (Irritability; Hyperactivity), and one main effect for classroom assignment on the Stereotypic Behavior subscale. Normative data for parent ratings were presented by age and gender combined, gender alone, and age alone. With some qualifications, the ABC-C appears to be valid for assessing children in special educational settings, although further research is needed on the ABC’s factor structure in this population. [Copyright &y& Elsevier]

Sexuality education (SE) for individuals with intellectual and developmental disabilities is needed, but is sparse. Seven individuals with intellectual and developmental disabilities and two educators participated in a mixed method participatory design to iteratively refine nine learning activities for SE. We analyzed usability, usefulness, and desirability of each activity. The utilization of multiple modalities, experiential learning opportunities, and inclusion of different perspectives yielded nine learning activities that were usable, useful, and desirable. This work resulted in learning activities to improve accessibility of SE for individuals with I/DD. Additional research is needed to evaluate activity effectiveness in improving knowledge. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The authors reflect on the growth attenuation research results of Gunther and Dickema, and also of Brosco and Feudtner. A perspective is offered regarding the medical community's involvement for these issues regarding quality of life for the disabled. Involuntary institutionalization and sterilization are some historically regrettable medical solutions.