Disability-related inequalities in the prevalence of loneliness across the lifespan: trends from Australia, 2003 to 2020.

BACKGROUND: Experiencing loneliness can be distressing and increasing evidence indicates that being lonely is associated with poor physical and mental health outcomes. Cross-sectional studies have demonstrated that people with disability have increased risk of experiencing loneliness compared to people without disability. However, we do not know if these inequalities have changed over time. This study investigated the prevalence of loneliness for people with disability in Australia annually from 2003 to 2020 to examine whether disability-related inequalities in loneliness have changed over time, and disaggregated results for subgroups of people with disability by age group, sex, and disability group. METHODS: We used annual data (2003-2020) from the Household, Income and Labour Dynamics in Australia Survey. Loneliness was measured by a single question assessing the subjective experience of loneliness. For each wave, we calculated population-weighted age-standardised estimates of the proportion of people experiencing loneliness for people with and without disability. We then calculated the absolute and relative inequalities in loneliness between people with and without disability for each wave. Analyses were stratified by 10-year age groups, sex, and disability group (sensory or speech, physical, intellectual or learning, psychological, brain injury or stroke, other). RESULTS: From 2003 to 2020, the prevalence of loneliness was greater for people with disability, such that people with disability were 1.5 to 1.9 times more likely to experience loneliness than people without disability. While the prevalence of loneliness decreased for people without disability between 2003 and 2020, the prevalence of loneliness did not decrease for people with disability during this period. Inequalities in loneliness were more substantial for people with intellectual or learning disabilities, psychological disability, and brain injury or stroke. CONCLUSION: This study confirms that people with disability have increased risk of loneliness compared to people without disability. We add to the existing evidence by demonstrating that disability-related inequalities in loneliness have persisted for two decades in Australia without improvement. Our findings indicate that addressing inequalities in loneliness for people with disability is a critical public health concern given that loneliness is associated with a wide range of poor health outcomes.

Participation and Companions for Socially Inclusive Community Activities by U.S. Adults With Intellectual and Developmental Disabilities.

We investigated socially inclusive participation in mainstream community groups and religious services by U.S. adults with intellectual and developmental disabilities using weighted secondary analyses of 2018-2019 National Core Indicators data. Overall, 34.4% participated in community groups and 42.4% in religious services. Some 45.0% had an unmet desire for community-group participation, whereas most (75.0%) attended a religious service as often as preferred. The type of companion varied by living arrangements and age group. Attending community groups and religious services were each strongly associated with better friendship outcomes but were not related to loneliness. The large unmet demand for community-group participation reveals a major gap. The friendship outcomes underline the benefits of socially inclusive community participation.

Disability, Loneliness and Health in the UK: cross-sectional survey.

BACKGROUND: Research has suggested that exposure to loneliness can have a powerful detrimental impact on health, including mental health. Addressing socially determined health inequity requires understanding of the situation of marginalized or vulnerable groups. People with disability are increasingly being recognized as one such group. Little population-based research has addressed the association between loneliness and health among working age adults with and without disability. METHODS: Secondary analysis of data collected in waves 8 and 9 of Understanding Society, the UK's main annual household panel study. RESULTS: Rates of exposure to substantial loneliness were 25.4% (95%CI 23.5-27.3%) among adults with persistent disability (disability at W8 and W9), 15.4% (13.3-17.5%) among adults with disability onset (disability at W9 only), 12.3% (10.1-14.5%) among adults with disability offset (disability at W8 only), and 6.9% (6.5-7.3%) among adults with no disability. Exposure to loneliness was positively associated with the incidence (GHQ-12) and prevalence (SF-12 Mental) of mental health problems, but not the prevalence of physical health problems (SF-12 Physical). Disability status appeared to moderate the association between loneliness and health, with the difference between the persistent disability and no disability group increasing with exposure to greater levels of loneliness. CONCLUSION: Loneliness may be an important determinant of the poorer mental health of working age adults with disability in the UK. Exposure rates are significantly higher than among the non-disabled population. The strength of association between exposure to loneliness and poorer mental health is greater for people with persistent disability than people with no disability.

The impact of disability on employment and financial security following the outbreak of the 2020 COVID-19 pandemic in the UK.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. METHODS: Secondary analysis of data collected in Wave 9 and the special April, May and June COVID-19 monthly surveys of 'Understanding Society', the UK's main annual household panel study. RESULTS: During the first 3 months of the introduction of the COVID-19 lockdown in the UK, respondents with disability were more likely than their peers to be working reduced hours and experience higher levels of financial stress. These differences were attenuated, but not eliminated, when estimates were adjusted to take account of pre-lockdown financial status. CONCLUSIONS: Working age adults with disability were particularly disadvantaged by the financial impact of the COVID-19 lockdown in the UK. The UN Secretary-General António Guterres has stated the need for a disability-inclusive COVID-19 government response. The results of our analysis suggest that these pleas have either not been heeded, or if measures have been implemented, they have so far been ineffectual in the UK.

Area-Level Associations between Built Environment Characteristics and Disability Prevalence in Australia: An Ecological Analysis.

The importance of health-promoting neighborhoods has long been recognized, and characteristics of local built environments are among the social determinants of health. People with disability are more likely than other population groups to experience geographic mobility and cost restrictions, and to be reliant on 'opportunity structures' available locally. We conducted an ecological analysis to explore associations between area-level disability prevalence for people aged 15-64 years and area-level built environment characteristics in Australia's 21 largest cities. Overall, disability was more prevalent in areas with lower walkability and lower local availability of various neighborhood amenities such as public transport, healthier food options, public open space, physical activity and recreation destinations and health and mental health services. These patterns of lower liveability in areas of higher disability prevalence were observed in major cities but not in regional cities. Our findings suggest that geographically targeted interventions to improve access to health-enhancing neighborhood infrastructure could reduce disability-related inequalities in the social determinants of health.

The Disability and Wellbeing Monitoring Framework: data, data gaps, and policy implications.

OBJECTIVE: To develop a framework and indicators to monitor inequalities in health and the social determinants of health for Australians with disability. METHODS: The development drew on existing frameworks and input from people with lived experience of disability. RESULTS: The Disability and Wellbeing Monitoring Framework has 19 domains. Australian national data are available for 73% of the 128 indicators in these domains. Data gaps and limitations include the absence of national data and the absence of disability identifiers in some data sources. CONCLUSIONS: The framework will be used to report baseline data for people with and without disability and to monitor inequalities over time in Australia. It will also be used to locate policy priorities and focus efforts to address data gaps. Implications for public health: Inequality between people with and without disability in relation to health and the social determinants of health is a public health issue that warrants greater attention than it has received to date. The framework provides a robust, evidence-informed tool to address the health inequalities of people with disability, inform the development of effective policy and practice responses, and monitor change over time.

The wellbeing of working-age adults with and without disability in the UK: Associations with age, gender, ethnicity, partnership status, educational attainment and employment status.

BACKGROUND: Few population-based studies have examined the association between disability and personal wellbeing (PWB) among working-age adults. OBJECTIVE/HYPOTHESIS: To determine: (1) the magnitude of differences in wellbeing between working-age adults with and without disability in contemporary samples representative of the UK population; and (2) whether the size of any observed differences between people with and without disability is moderated by age, gender, ethnicity, partnership status, educational attainment or employment status. METHODS: Secondary analysis of data from three national cross-sectional surveys. RESULTS: In each survey, people with disability scored lower than people without disability on all four indicators of PWB. Adjusting for the main effects of potentially moderating variables reduced the effect size of disability on PWB by an average of 24%. Subsequently adjusting for the two-way interaction terms between disability and potentially moderating variables reduced the effect size of disability (main effect) on PWB by an additional average of 73%. PWB among people with disability was significantly lower for: (1) men; (2) younger people; (3) those who belong to the majority ethnic group (white British); (4) those without a partner; and (5) people with lower socio-economic position. CONCLUSIONS: Our findings indicate that demographic characteristics and exposure to specific social determinants of poor health play a major role in the negative association between disability and personal wellbeing. A more sophisticated understanding of how social determinants interact to produce inequities associated with identities such as disability, gender, race, sexuality, and class (intersectionality) can inform effective policy interventions.

Longitudinal use and factors associated with public transport and other travel options for older people with an intellectual disability in Ireland.

BACKGROUND: Transport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness. METHOD: Data from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options. RESULTS: Findings confirmed that this population depends on others for transportation. The most frequently used mode, staff-supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes. CONCLUSIONS: Transport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

Effect of deinstitutionalisation for adults with intellectual disabilities on costs: a systematic review.

OBJECTIVE: To review systematically the evidence on the costs and cost-effectiveness of deinstitutionalisation for adults with intellectual disabilities. DESIGN: Systematic review. POPULATION: Adults (aged 18 years and over) with intellectual disabilities. INTERVENTION: Deinstitutionalisation, that is, the move from institutional to community settings. PRIMARY AND SECONDARY OUTCOME MEASURES: Studies were eligible if evaluating within any cost-consequence framework (eg, cost-effectiveness analysis, cost-utility analysis) or resource use typically considered to fall within the societal viewpoint (eg, cost to payers, service-users, families and informal care costs). SEARCH: We searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches and handsearching of the references of the eligible studies. We assessed study quality using the Critical Appraisals Skills Programme suite of tools, excluding those judged to be of poor methodological quality. RESULTS: Two studies were included; both were cohort studies from the payer perspective of people leaving long-stay National Health Service hospitals in the UK between 1984 and 1992. One study found that deinstitutionalisation reduced costs, one study found an increase in costs. CONCLUSION: A wide-ranging literature review found limited evidence on costs associated with deinstitutionalisation for people with intellectual disabilities. From two studies included in the review, the results were conflicting. Significant gaps in the evidence base were observable, particularly with respect to priority populations in contemporary policy: older people with intellectual disabilities and serious medical illness, and younger people with very complex needs and challenging behaviours. PROSPERO REGISTRATION NUMBER: CRD42018077406.

Association of state-level and individual-level factors with choice making of individuals with intellectual and developmental disabilities.

BACKGROUND: State-level factors have not been examined in research on choice, despite findings of between-state differences. AIMS: To examine both individual and state-level factors associated with choice. METHODS AND PROCEDURES: We used multilevel modeling to explore two choice scales, support-related and everyday choice, based on the National Core Indicators (NCI) data from 2013-14. OUTCOMES AND RESULTS: At the individual level, milder ID, greater mobility, fewer problem behaviors, answering questions independently, communicating verbally, and living in a non-agency setting, particularly independent settings, were associated with more choice for both scales. State-level factors overall explained variance for both scales, but were more strongly associated with support-related choice. A higher proportion of people with IDD living independently within the state predicted more support-related choice. High cost of living within a state predicted less everyday choice. Higher proportion of people living with family and lower proportion being served within a state predicted more everyday choice. CONCLUSIONS AND IMPLICATIONS: These findings suggest further study of choice in relation to policies that: (1) increase independent living for individuals with IDD, and (2) assist individuals/families living in high cost states. State differences on important QOL outcomes are likely to be associated with economic and system-based factorsbeyond individual differences.

Exploring Retirement for Individuals With Intellectual and Developmental Disabilities: An Analysis of National Core Indicators Data.

To begin to understand retirement, we examined age-related differences in (a) employment rates, employment hours, and rates of individual-plan employment goals; and (b) participation rates in unpaid formal day programs. We report weighted analyses of 2014-15 National Core Indicators data from 32 states. Unlike younger age groups, a similar proportion of workers with intellectual and developmental disabilities continued working beyond age 65 as for the general community. We found that most workers with intellectual and developmental disabilities retire in older age and that their retirement appears to be sudden, rather than a gradual reduction in work hours. Facility-based day programs were the only program with an increased participation rate in older age groups, revealing an even greater reliance on facility-based services for older participants.

Factors associated with meeting physical activity guidelines by adults with intellectual and developmental disabilities.

BACKGROUND: Many individuals with intellectual and developmental disabilities (IDD) have sedentary lifestyles. AIMS: (a) compare adults with IDD with the general adult population on adherence to U.S. physical activity (PA) guidelines, and (b) determine what factors predict adherence to PA guidelines by adults with IDD. METHODS: We compared adults with IDD from the 2011-2012 National Core Indicators Adult Consumer Survey (NCI-ACS) with the general U.S. population on meeting PA guidelines. We examined the association of demographic, diagnostic, mobility, health and community participation variables with meeting PA guidelines by adults with IDD. RESULTS: The rate for adults with IDD meeting PA guidelines (13.5%) was less than half that of the general population (30.8%). Among adults with IDD, at-risk groups included those with more severe disability, Down syndrome, mobility impairments, obesity, poor health, mental illness, no independent access to community exercise, and less frequent participation in community exercise. Going out for exercise was the only form of community participation associated with meeting PA guidelines. People who accessed the community for exercise independently (i.e., alone) were more likely to meet PA guidelines. CONCLUSIONS: Interventions aimed at increasing PA for people with IDD should consider these factors in their design.

Formal intergenerational mentoring at Australian Men's Sheds: a targeted survey about mentees, mentors, programmes and quality.

Intergenerational mentoring enables a purposeful exchange of skills and knowledge to enhance individual and social outcomes for sub-groups at risk of health and social disparities. Male intergenerational mentoring may be an approach to help address these disparities in young men. Over 1000 Men's Sheds operate in Australia with 39% providing some form of mentoring mainly to youth. Yet, little is known about the variables intrinsic to creating and running quality programmes. This study aimed to identify the characteristics of formal intergenerational mentoring programmes, review their quality against the Australian Youth Mentoring Network (AYMN) quality benchmarks, and identify the factors that predict quality in these programmes. All known Australian Men's Sheds were invited to participate in an online cross-sectional survey. Forty sheds with formal mentor programmes completed the survey for a total of 387 mentees (mean = 9.7 mentees/programme), the majority being male. The majority of mentor programme facilitators were unpaid male volunteers aged 61 years and older, and programmes were unfunded. Promoting social and emotional well-being of the mentees was the primary focus in more than half of the programmes, and working on a shared construction project was the most common activity. Respondents rated the three most important factors that influenced programme effectiveness as being: (i) meaningful activities; (ii) mentors' approach; and (iii) a safe environment. Univariate analyses revealed that mentoring programmes that had a system in place for screening mentors, trained mentors and evaluated the programme were most likely to rate highly against the AYMN quality benchmarks.

Alternative service delivery models for families with a new speech generating device: Perspectives of parents and therapists.

PURPOSE: Research has revealed limitations in the provision of in-person services to families with a new speech generating device (SGD), both in Australia and overseas. Alternative service models such as parent training, peer support and telepractice may offer a solution, but their use with this population has not been researched to date. METHOD: Using interviews and focus groups, this study explored the experiences and opinions of 13 speech-language pathologists and seven parents regarding alternatives to in-person support and training for families with a new SGD. Data were analysed using grounded theory. Themes explored in this paper include the benefits and drawbacks of alternative service models as well as participants' suggestions for the optimal implementation of these approaches. RESULT: Participants confirmed the utility of alternative service models, particularly for rural/remote and underserviced clients. Benefits of these models included reduced travel time for families and therapists, as well as enhanced information access, support and advocacy for parents. CONCLUSION: Participants viewed the provision of ongoing professional support to families as critical, regardless of service modality. Additional issues arising from this study include the need for development of organizational policies, resources and training infrastructure to support the implementation of these alternative service models.

Embedding sustainable physical activities into the everyday lives of adults with intellectual disabilities: a randomised controlled trial.

BACKGROUND: Adults with intellectual disability (ID) are physically very inactive. This study will compare two approaches to increasing physical activity in adults with ID: a lifestyle physical activity (light-moderate intensity) approach and a structured exercise (moderate-vigorous intensity) approach. The trial will compare the short-term (3-month) and long-term (9-month) outcomes and sustainability of each approach with a usual-care control group. METHODS/DESIGN: A three-arm randomised controlled trial (RCT) will be conducted. Ninety adults with ID aged 18-55 will be randomly assigned to one of three groups: 1) a lifestyle physical activity group (n = 30), 2) a structured exercise group (n = 30), or 3) a usual care control group (n = 30). Participants in both groups will receive a 12-week intervention delivered by exercise specialists in the community with disability service staff, after which intervention will continue for 6 months, delivered by disability service staff only. Primary outcomes are aerobic fitness, 12-hour energy expenditure, and proxy-reported everyday physical activity. Secondary outcomes include objectively assessed physical activity and sedentary behaviour, intervention compliance, functional walking capacity, participation in domestic activities, muscle strength, body composition, psychosocial outcomes, quality of life and health care costs. DISCUSSION: The trial results will determine the effectiveness and sustainability of two approaches to increasing physical activity and exercise among adults with ID. TRIAL REGISTRATION: ISRCTN77889248 (18 April 2012).

Environmental risk factors associated with the persistence of conduct difficulties in children with intellectual disabilities and autistic spectrum disorders.

We investigated the association between exposure to environmental risks in early childhood and the prevalence and persistence of conduct difficulties (CD) in children with intellectual disability (ID) who did not have autistic spectrum disorder (ASD), children with ASD and typically developing (TD) children. Results indicated that: (1) exposure to risk was associated with elevated prevalence of CD at age three and, for TD children and children with ID, increased risk of CD persisting to ages five and seven; (2) at all levels of risk, children with ASD were more likely to show persistent CD than other children; (3) children with ID were no more likely to show persistent CD than TD children at low levels of exposure to environmental risk.

I-CAN: the classification and prediction of support needs.

BACKGROUND: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. METHOD: A study is presented comparing scores on the ICF (WHO, 2001) based I-CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. RESULTS: Good internal consistency (range 0.73-0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. CONCLUSIONS: Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.

Interventions provided by parents for children with intellectual disabilities in low and middle income countries.

BACKGROUND: In low- and middle-income (LAMI) countries, there is a lack of well-trained therapists to provide specialist interventions for children with intellectual disabilities and their families. We sought to identify strategies deliverable by families or non-specialist workers. MATERIALS AND METHODS: After searches of appropriate scientific databases, we applied GRADE methodology to rate the quality of evidence for these interventions. RESULTS: We identified small-scale interventions trialled in LAMI countries with limited evidence of effectiveness in supporting development, adaptive behaviour and/or community participation. In high-income countries, the Stepping Stones Triple P program for adaptive behaviour and the Portage program for child development have the most extensive evidence base and may be applicable in LAMI countries. CONCLUSIONS: There is reason to hope that, when combined with community development strategies, the welfare of children with intellectual disabilities in LAMI countries can be advanced within those countries' economic means.