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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.

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.

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.

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.

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.

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.

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.

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.

A study involving 104 adults with mental retardation investigated the relationships among social support, social strain, and psychopathology. Results found that social strain was more strongly associated with psychopathology than were overall low levels of social support for the individuals with mental retardation. (Author/CR)

Two instruments, one a self-report measure and one an informant assessment, were developed to assess the strength of a person's end goals and motivational sensitivities. Results of seven studies involving 2548 adults and adolescents support a 15-factor solution for each instrument, with solutions similar to each other. Implications for a model of fundamental motivation are discussed. (SLD)

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]

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]

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]

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]

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]