Disability and loneliness in the United Kingdom: cross-sectional and longitudinal analyses of trends and transitions.

BACKGROUND: Loneliness can have a detrimental impact on health, yet little is known about the association between disability and loneliness. METHODS: Secondary analysis of three waves of data collected between 2017 and 2020 by the UK's annual household panel study, Understanding Society. Direct age-standardisation was used to compare the prevalence of loneliness at each wave and the persistence of loneliness across all three waves for participants with/without disabilities aged 16-65 years. Transitional probabilities for the stability of loneliness, the stability of non-loneliness, the onset of loneliness and the offset of loneliness between consecutive waves were also estimated. RESULTS: At each wave, the prevalence of loneliness was significantly higher among respondents with disabilities than respondents without disabilities; these inequalities persisted with no evidence of change over time. The prevalence of persistent loneliness was 46% for respondents with disabilities compared with 22% for respondents without disabilities. Risk factors for the likelihood of persistent loneliness included disability, financial stress, not living as a couple, living in rented accommodation, being female and not being employed. The probability of the onset and stability of loneliness between successive waves were markedly higher for people with disabilities compared with people without disabilities. CONCLUSION: Adults with disabilities were more likely to experience loneliness, become lonely and remain lonely over time than their peers. Policies and interventions aimed at reducing loneliness should ensure that they are accessible and effective for people with disabilities. Further research is needed to explore the health outcomes of persistent loneliness among people with/without disabilities.

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.

Analysis of an Australian death database of people with intellectual disability living out of the family home: Place of death and associated variables.

This study reports on a five-year data set about the deaths of 599 individuals in New South Wales Australia, who at the time of their death were living in out-of-home care. Analysis aimed to: i) gain a clearer understanding of place of death for people with intellectual disability; and ii) identify and analyse associated variables to investigate how well they predict place of death for this population. Hospital admissions, polypharmacy and living situation were the strongest standalone predictors of place of death. A hospital death was more likely if the target population were subject to polypharmacy, lived in a group home, had a moderate intellectual disability or had GORD. Death, and place of death, is an issue requiring individual consideration. This study has identified some of the variables that need attention when supporting people with intellectual disability to have a good death.

From mainstream employment to mainstream retirement: A randomised controlled trial of a transition to retirement intervention for adults with intellectual disability.

BACKGROUND: We evaluated a transition to retirement intervention that adapted strategies used to support employment of people with intellectual disability in mainstream workplaces. The intervention facilitated their independent participation in mainstream community groups and volunteering. METHODS: We randomised 29 older Australians who currently/previously worked in mainstream employment into an intervention group or wait-list control group. Hours of independent participation in target activities were collected before and after the 13-week initial intervention/waiting period, and at 52 weeks for intervention participants. RESULTS: Six of the 12 intervention participants selected an activity and increased hours of independent participation following 13 weeks in the Keeping Active (KA) program and eight were independently accessing their selected activity at 52-week follow-up. None of the 19 wait-list participants increased their independent participation after 13 weeks. CONCLUSIONS: The intervention was effective and highlighted the need to account for factors such as participant choice in evaluation of individualised programs.

Current services and outcomes of formerly institutionalised and never-institutionalised US adults with intellectual and developmental disabilities: A propensity score matching analysis.

BACKGROUND: Deinstitutionalization research shows better services and outcomes relative to institutional life but has not compared formerly institutionalised and never-institutionalised service users. METHODS: We used propensity score matching (PSM) to match formerly institutionalised and never-institutionalised participants on six personal characteristics. Data came from the 2018 to 2019 National Core Indicators In-Person Survey. We excluded current institution residents, and states with 25% + of missing data on former institutionalisation. RESULTS: Overall, 15.5% of participants in the 29-state full sample had lived in an institution for 1 year or more. Findings from the PSM sample showed that former-institution residents were more likely to use congregate living arrangements and less likely to live with family. They experienced more loneliness, less support-related choice, and had a consistent pattern of disability service-focused social connections. CONCLUSIONS: Many former institution residents remain disadvantaged relative to matched peers. There is a need to identify factors to enhance services and outcomes following deinstitutionalization.

Do Area-Level Environmental Factors Influence Employment for People with Disability? A Scoping Review.

Employment is an important social determinant of health and wellbeing. People with disability experience labour market disadvantage and have low labour force participation rates, high unemployment rates, and poor work conditions. Environmental factors are crucial as facilitators of or barriers to participation for people with disability. Understanding how the physical, social, and economic characteristics of local areas influence employment for people with disability can potentially inform interventions to reduce employment inequalities. We conducted a scoping review of research investigating associations between area-level environmental factors and employment for people with disability. Eighteen articles published between 2000 and 2020 met the inclusion criteria, and data were extracted to map the current evidence. Area-level factors were categorised into six domains relating to different aspects of environmental context: socioeconomic environment, services, physical environment, social environment, governance, and urbanicity. The urbanicity and socioeconomic environment domains were the most frequently represented (15 and 8 studies, respectively). The studies were heterogeneous in terms of methods and data sources, scale and type of geographic units used for analysis, disability study population, and examined employment outcomes. We conclude that the current evidence base is insufficient to inform the design of interventions. Priorities for future research are identified, which include further theorising the mechanisms by which area-level factors may influence employment outcomes, quantifying the contribution of specific factors, and interrogating specific factors underlying the association between urbanicity and employment outcomes for people with disability.

Community participation and staying home if you want: US adults with intellectual and developmental disabilities.

BACKGROUND: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. METHOD: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. RESULTS: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. CONCLUSIONS: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.

The impact of the COVID pandemic on working age adults with disability: Meta-analysis of evidence from four national surveys.

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID-19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID-19. We sought to compare the impact of the early stages of the COVID-19 pandemic and associated government responses among working age adults with and without disabilities in the UK on; COVID-19 outcomes, health and wellbeing, employment and financial security, health behaviours, and conflict and trust. We undertook secondary analysis of data collected in four UK longitudinal surveys; the Millennium Cohort Study, Next Steps, the British Cohort Study and the National Child Development Study. Combining analyses across surveys with random effects meta-analysis, there was evidence that people with disabilities were significantly more likely to report having had COVID-19 and had significantly increased levels of stress, less exercise, poorer sleep patterns, more conflict with their partner and others in their local area, and to have less trust in the government. While most outcomes did not differ significantly between participants with and without disability, the findings suggest that in the early days of COVID-19 a detrimental impact emerges for those with disabilities which is more pronounced among older people with disabilities. Future research is needed to determine the longer-term impact of the pandemic.

Functional Performance and the Allen Cognitive Level Screen for Adults With Mental Illness: A Scoping Review.

IMPORTANCE: Research involving the use of the Allen Cognitive Level Screen (ACLS) in mental health practice has been available for more than 40 yr, yet there has been no comprehensive synthesis and review of this body of literature. OBJECTIVE: To review, summarize, compare, and evaluate the existing literature regarding the relationship between the ACLS and the functional and adaptive functional performance of adults living with mental illness. DATA SOURCES: Searches with no date limits were conducted in the CINAHL, MEDLINE, PsycINFO, ProQuest, and OTseeker databases. Study Selection and Data Collection: A five-stage scoping review methodology was used to examine peer-reviewed English-language literature reporting on the relationship between ACLS scores and functional and adaptive functional performance of adults with mental illness. Information from 15 studies was charted, collated, and numerically and thematically summarized. FINDINGS: A positive relationship between ACLS scores and in-the-moment performance was consistently reported. The relationship of ACLS scores to community living performance was less consistent. Methods of assessing performance, complexity of tasks assessed, and timing of assessments affected relationships with cognition as measured by ACLS. Gaps in the literature were identified. CONCLUSIONS AND RELEVANCE: Findings raise questions about how, why, and when occupational therapists use the ACLS. Increased examination is needed of what aspects of performance and functional cognition reliably determine people's ability to live successfully in the community. What This Article Adds: This article provides the first synthesis of the existing literature on the relationship between ACLS scores and functional and adaptive functional performance of people living with mental illness.

Health and healthcare for people with disabilities in the UK during the COVID-19 pandemic.

BACKGROUND: While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. OBJECTIVE: This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without disability. METHODS: Longitudinal analysis of 12,703 adults (16-64 years) who participated in W9 (2017-2019) and the April and/or May COVID-19 special surveys of the UK Understanding Society study. Descriptive analyses and Poisson regression (adjusted for age, gender, ethnicity and financial stress) were conducted to estimate associations between disability (measured at Wave 9) and a number of different COVID-19-related health and health care outcomes (COVID-19 symptoms, testing and hospitalisation), mental health and loneliness, and non-COVID-19 related health care (e.g. outpatient and inpatient hospital care, prescription medications). RESULTS: Results from the fully-adjusted regression models found that people with disability were more likely: to be hospitalised if symptomatic (adjusted PRR 3.0 95% 1.07-8.43); to experience current symptoms of psychological distress (PRR 1.15, 95% CI 1.05-1.26) and to report being lonely (PRR 1.75, 95% CI 1.46-2.09) compared to non-disabled people. People with disability reported much higher levels of comorbidities than people without disability. However, inability to access health care and treatment were similar. CONCLUSIONS: As the UK opens up, it is important that health care services and social policy address the poor mental health and social isolation of people with disability so that the inequalities occurring early in the pandemic do not become further entrenched.

Policy Implications, Eligibility, and Demographic Characteristics of People With Intellectual Disability Who Access Self-Directed Funding in the United States.

This study identifies factors (state of residence, personal characteristics, and living situation) associated with access to self-directed funding (SDF) for adults with intellectual disability in the United States. Data from 10,033 participants from 26 states in the 2012-2013 National Core Indicators Adult Consumer Survey were analyzed. We examined state, age group, residence type, disability diagnoses, mental health status, and type of disability support funding used. Availability of SDF for people with ID varied by state and aligned mostly with state-by-state policy data on SDF eligibility and availability. The results of a logistic regression analysis demonstrated that access to SDF was lower in older adults and higher for people who lived in their parents' or relatives' home, an independent home, and with certain personal characteristics. Potential influences from policy and practice, and approaches to increase access to SDF are discussed.

Specialist palliative care staff's varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews.

BACKGROUND: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. AIM: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. DESIGN: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. SETTING/PARTICIPANTS: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. RESULTS: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). CONCLUSIONS: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

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.

Australians with intellectual disability share their experiences of retirement from mainstream employment.

BACKGROUND: As part of a larger study exploring the transition to retirement for people with intellectual disability from a working life in mainstream employment, this paper reports on retirement from the perspective of those who have already retired. METHOD: Semi-structured interviews were undertaken with five Australian retirees with intellectual disability. Data were analysed using grounded theory methodology. Employment service records provided background information on participants' employment and supports. RESULTS: Retirement occurred as the solution to ongoing problems primarily related to health. Retirement decisions were made in conjunction with family and support staff, with participants reporting varying levels of self-determination in the process, and mixed feelings about their retirement. None of the participants were participating in mainstream community groups in retirement. CONCLUSIONS: There is a need for retirement preparation for this emerging population to support self-determination in retirement-related decisions including individualized training to facilitate independent participation in mainstream social activities in retirement.

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.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

Factors related to hospital utilisation for people living with schizophrenia: Examining Allen's Cognitive Level Scores, recommended supports and routinely collected variables.

INTRODUCTION: Australian occupational therapists working on mental health inpatient wards are often requested to assess a person's function and, based on that assessment, recommend the best support environments for that person post-discharge. The Allen Cognitive Level Screen (ACLS) is a tool used by some therapists to screen cognitive functioning as a basis with which to make support recommendations. There is limited examination of the outcomes for people post-discharge if the ACLS score-based support recommendations are followed. METHOD: A retrospective cohort design involved quantitative analysis of archival data for 150 adult (18-65 years old) consumers with a primary diagnosis of schizophrenia and an ACLS completed pre-discharge. Data up to 12 months post-discharge from hospital were studied. Outcomes examined included re-presentations or readmission to hospital, length of time in community prior to re-presentation and length of stay in hospital if readmitted. RESULTS: Being younger, male, receiving formal supports, having a drug and alcohol disorder comorbidity, living in public housing and having a lower cognitive level as measured by the ACLS were significant univariate factors associated with higher hospital utilisation for one or more of the outcome variables. Multivariate analyses revealed fewer significant relationships, with being younger and receiving formal supports significantly associated with greater likelihood of return to hospital. CONCLUSION: This research contributes to evidence of the complexity of living with schizophrenia in the community and supporting people to stay out of hospital. More research regarding how the ACLS score-aligned support recommendations are carried out and the impact on hospital utilisation is needed in order to enhance occupational therapists confidence in their use and prescription.

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.