Search

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: 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. [This article was co-authored by the Nisonger Center RRTC on Health and Function.]

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.

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.

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.

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.

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]

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.

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.

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.

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]

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]

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.

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.

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.

Parents of 601 children and adolescents with mental retardation rated their children on the Aberrant Behavior Checklist-Community (ABC). Factor analysis revealed a factor structure similar to the original ABC but without the inappropriate speech factor. Analysis of subject variables revealed main effects for gender, age, and classroom assignment on specific subtests. Results support use of the measure for this population. (Contains references.) (Author/DB)

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)

Sensitivity theory divides the causes of challenging behavior into three categories, aberrant contingencies, aberrant environments, and aberrant motivation. This paper replies to criticism that sensitivity theory is circular and unsupported by empirical evidence by reporting on studies that support the theory and rejecting the idea that sensitivity theory and functional analysis represent an "either/or" viewpoint. (Author/DB)

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)

Discusses problems of using applied behavior analysis for individuals with mental retardation who have behavior disorders and presents a sensitivity model of motivation that stresses analysis in terms of aberrant environments, aberrant contingencies, and aberrant motivation. Describes implications for communication theory, assessment, and treatment. (Author/CR)

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]

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]

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]

A study with 1712 diverse participants is done to seek support for Maslow's theory of growth from lower motives like eating and exercise to higher motives like honor and idealism. The results provide support for Maslowe's general idea of human growth revealing that the lower motives were stronger for younger adults while higher motives were stronger for older adults.

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]