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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.

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

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

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

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

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

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

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

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

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

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

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.

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

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

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

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.

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.

The health impacts of caring for people with mental illness (MI) and developmental disabilities (DD) are not well understood.The present study explored whether health outcomes differed between MI and DD caregivers, and if intensity and duration of care moderated health outcomes.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.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.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.

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.

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.

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.

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.

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.

Background People with disabilities experience worse health and poorer access to health care compared to people without disability. Large-scale health surveillance efforts have largely excluded adults with intellectual and developmental disability. This study expands knowledge of health status, health risks and preventative health care in a representative US sample comparing the health of adults with no disability to adults with intellectual and developmental disability and to adults with other types of disability. Objectives The purposes of this study were (1) to identify disparities between adults with intellectual and developmental disability and adults with no disability and (2) compare this pattern of disparities to the pattern between adults with other types of disability and adults without disability. Methods This study compares health status, health risks and preventative health care in a national sample across three groups of adults: No Disability, Disability, and Intellectual and Developmental Disability. Data sources were the 2010 Behavior Risk Factor Surveillance Survey and the National Core Indicators Consumer Survey. Results Adults with disability and with intellectual and developmental disability were more likely to report being in poor health compared to adults without disability. Disability and intellectual and developmental disability conferred unique health risks and health care utilization patterns. Conclusions Significant disparities in health and health care utilization were found for adults with disability and developmental disability relative to adults without disability. Disability training for health care providers and health promotion research that identifies disability as a demographic group is needed.

A large, nationally representative sample from a preexisting dataset, the National Core Indicators, was used to examine the impact of stress and social support on the mental health of adults with intellectual disability (ID). Stress was significantly correlated with both mental illness and severity of behavior problems, with each additional stressor increasing the odds of poor mental health by 20%. This relationship held, even after controlling for level of ID, gender, and place of residence. Lack of social support was associated with having a mental illness; individuals who lacked social support were twice as likely to have a mental illness. The importance of considering these factors in the prevention, diagnosis, and treatment of mental health in this population is discussed.

The editorialists discuss the importance of Whitney and colleagues' findings to patients, health professionals, policymakers, and researchers.

OBJECTIVE: The purpose of this study was to empirically test if siblings of children with disability had higher levels of parent-reported behavioral and emotional functional impairment compared with a peer group of siblings residing with only typically developing children. METHODS: This was a retrospective secondary analysis of data from the Medical Expenditure Panel Survey. We included only households with at least 2 children to ensure sibling relationships. Two groups of siblings were formed: 245 siblings resided in households with a child with disability and 6564 siblings resided in households with typically developing children. Parents responded to questions from the Columbia Impairment Scale to identify functional impairment in their children. RESULTS: On the basis of parent reports and after adjusting for sibling demographic characteristics and household background, siblings of children with disability were more likely than siblings residing with typically developing children to have problems with interpersonal relationships, psychopathological functioning, functioning at school, and use of leisure time (P < .05). The percentage of siblings of children with disability classified with significant functional impairment was 16.0% at the first measurement period and 24.2% at the second (P < .001). For siblings of typically developing children there was a smaller percentage increase from 9.5% to 10.3% (P < .001). CONCLUSIONS: Functional impairment is a key indicator for the need of mental health services and, as such, early assessment and interventions to limit increasing severity and short- to long-term consequences need to be addressed. Health care professionals need to consider a family-based health care approach for families raising children with disability.

Lack of medical training results in physicians being unprepared to provide care to people with disabilities, which, in turn, contributes to the substantial health disparities that are evident in this population. Few medical schools or primary care residencies address the care of adults with disabilities. Competencies and guidelines to assist American physicians in caring for patients with physical or intellectual disabilities have yet to be established, thus making educational goals unclear. This article describes one novel training module regarding people with disabilities that was developed at the University of South Florida Health, Morsani College of Medicine (USF) and inserted into the primary care clerkship during a major curriculum redesign in 2005. Since then, all USF third-year medical students have been required to participate in this disability-related course component. The authors describe the module's development and integration into the primary care clerkship, as well as the specific elements of their curriculum. By using a variety of teaching modalities in the classroom and community, and especially by involving people with disabilities themselves, the medical students have a very comprehensive learning experience regarding people who have physical, sensory, or intellectual disabilities. The authors have been able to show that USF medical students, on completion of this module, demonstrate improved knowledge, attitudes, and comfort in caring for people with disabilities, which the authors believe will lead to improved health and health care access for this underserved population. Suggestions for program replication, including common challenges, are also discussed.

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.

Children and adults with intellectual and developmental disabilities (IDD) are vulnerable to poor health outcomes and have difficulty accessing needed health care. With few exceptions, health care providers have limited knowledge, experience and comfort in caring for patients with IDD. Disability content is sorely lacking in healthcare curricula. To develop disability competence, health care providers may seek continuing education on the topic. This chapter reviews resources for continuing education such as consensus medical guidelines, interactive programs or websites and organizations that provide resources toward improving healthcare quality.

Information on the health and wellness of people with intellectual and developmental disability (IDD) has been furthered by direct clinical assessments, community surveys, and health service research. Each of these presents with limitations, particularly in the area of generalization. Population based surveillance methods address this limitation and provide a representative look at the lives of people with IDD. National surveillance datasets are successful in presenting rich, nationally-representative information on health issues, however, they also present with limitations that do not apply to other methods of health research. For example, this methodology is unable to confirm diagnoses of health conditions endorsed by respondents, and information may not be as in-depth as smaller-scale studies such as direct assessment, community-based surveys, and health record reviews. Despite these limitations, we will in this chapter share examples of research findings that have been published using national surveillance data. Surveillance data has led to many discoveries in terms health status, care, and quality that can help health care providers anticipate the needs of patients with IDD and their families, and ultimately provide better care.

Background: People with developmental disabilities experience worse health than typically developing peers. This health differential is often described in terms of health disparities, which refers to differences caused or exacerbated by social or access issues. Objective: the goal of this study was to compare the weight status and health conditions of adults with Down syndrome to comparison groups of adults with developmental disabilities and adults with no disability. Methods: Information about health risks and health conditions was collected for 291 adults with Down syndrome living in Ohio through an online survey. We compared this data on adults with Down syndrome to state-level data from adults without disabilities (2012 BRFSS) and Ohio data on a random sample of adults with developmental disabilities other than Down syndrome (2012-2013 National Core Indicators). Results: Adults with Down syndrome were 3 times more likely to be overweight or obese than adults without disabilities. Surprisingly, despite having a body mass index in the overweight or obese range, 70% of adults with Down syndrome reported having eating habits that were good to excellent and less than 6% of the Down syndrome sample reported having co-occurring diabetes or hypertension. Discussion: Despite high rates of overweight and obesity, few adults with Down syndrome reported having the chronic health conditions associated with excess weight. Further research is needed to understand the health risks of overweight in adults with Down syndrome and the availability of health promotion programs for this population.

We tested the factorial stability of the Reiss Screen for Maladaptive Behavior (Reiss, 1988a, The Reiss Screen for Maladaptive Behavior test manual). Reasonable fit was demonstrated in a geographically diverse sample of 448 individuals with mild, moderate, severe and profound mental retardation according to four measures of overall fit: RMSEA, ECVI, NNFI, and NFI. The results confirm Reiss' (1988a) factor solution of this widely used dual diagnosis (mental retardation and mental illness) screening instrument.

Objective: This study was undertaken to obtain detailed measurements ofthe volume of the brain, using magnetic resonance imaging (MRI), in a carefully selected group ofautistic subjects and comparison subjects. Method: Twenty-two male autistic subjects and 20 male t’olunteer comparison subjects were examined with detailed (1 .5-mm slices) MRI throughout the entire brain. Total brain, total brain tissue, and total lateral ventricle volumes were measured by using manual tracing and automated techniques. Results: After height and performance IQ were controlled, autistic subjects had significantly greater total brain, total tissue, and total lateral ventricle volumes than comparison subjects. Conclusions: These findings suggest that male autistic subjects have enlarged brains and that enlargement is a result of both greater brain tissue volume and greater lateral ventricle volume. -(AmJPsychiatry 1995; 152:1145-1149)

Objective: The National Association for the Dually Diagnosed, in collaboration with the American Psychiatric Association, adapted the DSM-IV-TR for use with individuals with intellectual disability. This article presents the findings of a study to examine the utility of the Diagnostic Manual-Intellectual Disability (DM-ID) in clinical practice. Method: In a survey conducted during the summer of 2006, clinicians reported on the extent to which the DM-ID was user friendly, whether it allowed the clinician to arrive at an appropriate diagnosis of the patient, if the clinician was able to arrive at a more specific diagnosis than with the DSM-IV-TR, and if it helped avoid the use of “not otherwise specified” (NOS) diagnostic categories. Demographic information about the clinicians and the patients was obtained. Results: Data from 63 clinicians and 845 patients with intellectual disability were included in the study. The patients’ level of intellectual disability was approximately evenly divided among the categories of mild, moderate, and severe/profound. The DM-ID was rated as “easy” or “very easy” to use in over 68% of the 845 responses. The positive response to the DM-ID did not vary significantly across levels of intellectual functioning. Clinicians also indicated that the DM-ID helped them avoid the use of the “NOS” diagnosis category, resulting in a more specific diagnosis. Conclusion: The DM-ID is a useful adaptation of the DSM-IV-TR for persons with intellectual disability. Professionals indicated that it was easy to use, resulted in accurate diagnoses, and can reduce the use of the NOS category. Further research is needed to evaluate the reliability and validity of the DM-ID.

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.

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 efforts must be specifically designed for this population.

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.

Sensitivity theory holds that people differ in both the types of reinforcement they desire and in the amounts of reinforcement they need to satiate. People who crave too much love, too much attention, too much acceptance, too much companionship, or too much of some other fundamental reinforcer are at risk for aberrant behavior because normative behavior does not produce the desired amounts of reinforcement. People who are intolerant of even everyday amounts of anxiety or frustration also are at risk for aberrant behavior. Individual differences in desired amounts of particular reinforcers may predict person-environment interactions, risk factors for psychopathology, and the occurrence of generalized and durable therapy effects versus the occurrence of relapses. Parallel predictions are made for individual differences in tolerance of aversive stimuli. Implications are discussed for applied behavior analysis, the development of psychopathology, and treatment strategies.

This study tested the hypothesis that separate ratings of frequency and duration add significant information to ratings of problem severity in the assessment of psycho-pathology In people with mental retardation. The Reiss Screen was modified to require ratings of problem severity, frequency and duration for each of 38 maladaptive behaviours. The 171 adolescents and adults were rated by caretakers and supervisory staff on the modified Reiss Screen. The three ratings were found to be very highly intercorrelated. Moreover, multiple linear regression analyses revealed that the ratings of frequency and duration did not add significant information to that provided by ratings of problem severity in the prediction of psychiatric diagnosis in the person's case file. The results support the use of composite scaling over multiple-ratings in the assessment of psycho-pathology in persons with mental retardation.

Freeman et al. (1998) asserted that sensitivity theory is circular, unsupported by empirical evidence, and represents an “either/or” decision in regard to applied behavior analysis. We reply by showing that sensitivities are objectively measured and that our theory permits testable predictions. Further, we briefly summarize the results of recent studies that support our theory, including investigations that link sensitivities to genes and challenging behavior. Finally, we reject the idea that sensitivity theory and functional analysis represent an “either/or” viewpoint and call again for research to integrate these approaches.

Low social support is known to be a risk factor for mental illness in the general population. Social strain, or stressful social interaction, has also been shown to correlate highly with psychopathology but has been largely ignored for individuals with mental retardation. Results based on staff ratings of 104 adults with mental retardation are presented, highlighting the relationship among support, social strain, and psychopathology. Data suggest that social strain is more strongly associated with psychopathology than are overall low levels of social support for individuals with mental retardation.

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.