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.

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.

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.

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.

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.

Gendered service delivery: a masculine and feminine perspective on staff gender.

Despite acknowledgement that paid caregivers have a significant impact on the lives of people with intellectual disability, the subjective experience of staff gender is rarely considered in research. Qualitative data from a study on the sexual health needs of men and boys with intellectual disability is presented. We designed this study to determine what impact staff gender has on the sexual health needs of men and boys with intellectual disability. Findings suggest that although staff traverse the same geographies of care, they do it in uniquely gendered ways. Staff gender is an important consideration when dealing with sexual health matters and can enhance the type and quality of relationships between people with intellectual disability.

Satisfaction and sense of well being among Medicaid ICF/MR and HCBS recipients in six states.

Self-reported satisfaction and sense of well-being were assessed in a sample of 1,885 adults with intellectual and developmental disabilities receiving Medicaid Home and Community Based Services (HCBS) and Intermediate Care Facility (ICF/MR) services in 6 states. Questions dealt with such topics as loneliness, feeling afraid at home and in one's neighborhood, feeling happy, feeling that staff are nice and polite, and liking one's home and work/day program. Loneliness was the most widespread problem, and there were also small percentages of people who reported negative views in other areas. Few differences were evident by HCBS and ICF/MR status. The findings document consistent benefits of residential support provided in very small settings-with choices of where and with whom to live-and to individuals living with family.

Factors associated with expenditures for medicaid home and community based services (HCBS) and intermediate care facilities for persons with mental retardation (ICF/MR) services for persons with intellectual and developmental disabilities.

This article examines expenditures for a random sample of 1,421 adult Home and Community Based Services (HCBS) and Intermediate Care Facility/Mental Retardation (ICF/MR) recipients in 4 states. The article documents variations in expenditures for individuals with different characteristics and service needs and, controlling for individual characteristics, by residential setting type, Medicaid program (ICF/MR or HCBS), and state. Annual average per-person Medicaid expenditures for HCBS recipients were less than those of ICF/MR residents ($61,770 and $128,275, respectively). HCBS recipients had less severe disability (intellectual, physical, health service needs) than ICF/MR residents. Controlling these differences, and for congregate settings, HCBS were less costly than ICFs/MR, but this distinction accounted for only 3.3% of variation in expenditures. Persons living with families receiving HCBS ($25,072) and in host families (including foster, companion, or shared living arrangements; $44,112) had the lowest Medicaid expenditures.

Minority status, consumer outcomes, and service inputs in four States.

Data from the Center for Outcome Analysis were subjected to independent secondary analysis involving comparisons by ethnic group of eight indicators of service quality for users of adult developmental disability services in four states. Ethnic group membership had very limited or no association with the consumer outcomes and service inputs evaluated. Where significant ethnic group differences were found, they were small, and there was no consistent pattern of a particular ethnic group doing better. These findings may relate to the substantial influence of developmental disability services in the lives of service recipients and to the effect of disability itself, in that adaptive behavior was strongly related to most consumer outcomes.