Mothers and fathers with intellectual and developmental disabilities who use US disability services: prevalence and living arrangements.

BACKGROUND: Little information is available on the prevalence of mothers and fathers with intellectual and developmental disabilities among US disability-service users. Child removal is a key issue for these parents. METHODS: We analysed 2018-19 National Core Indicators data from 35 states on US adults with intellectual and developmental disabilities being a parent. For parents of a child under 18, we examined whether the child lived with them. RESULTS: Prevalence of parenthood was 3.7% (6.0% women, 2.1% men). Among parents of a child under 18, 44.0% had their child living with them. Being a mother, being married and living with family were positively associated with child co-residence. Parents with co-resident children mainly lived in their own home (59.7%) or their family's home (32.3%). CONCLUSIONS: Our prevalence estimate suggests a national total of 33 794 US parents who use intellectual and developmental disabilities services. For parents living with their child, a critical task for disability services is to enable parents and children to live in a family setting.

Social and community inclusion outcomes for adults with autism with and without intellectual disability in Australia.

BACKGROUND: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability. METHOD: Eighty-four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co-occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer-report and self-report. RESULTS: Participants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self-report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes. CONCLUSION: Autistic adults encountered numerous difficulties in leading an independent life. Adults with co-occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer-report and self-reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer-report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently.

Vaccine hesitancy among working-age adults with/without disability in the UK.

OBJECTIVES: To estimate levels of COVID-19 vaccine hesitancy among working-age adults with disabilities in the United Kingdom. STUDY DESIGN: Cross-sectional survey. METHODS: Secondary analysis of data collected on a nationally representative sample of 10,114 respondents aged 16-64 years. RESULTS: The adjusted relative risk for hesitancy among respondents with a disability was 0.92 (95% CI 0.67-1.27). There were stronger associations between gender and hesitancy and ethnic status and hesitancy among participants with a disability. The most common reasons cited by people with disabilities who were hesitant were: concern about the future effects of the vaccine, not trusting vaccines and concern about the side effects of vaccination. CONCLUSIONS: The higher rates of vaccine hesitancy among women with disabilities and among people from minority ethnic groups with disabilities are concerning.

Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability.

BACKGROUND: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. METHODS: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. RESULTS: We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. CONCLUSIONS: People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.

The impact of individual and organisational factors on engagement of individuals with intellectual disability living in community group homes: a multilevel model.

BACKGROUND: Being engaged in daily activities is a strong indicator of quality of life for individuals with intellectual disability (ID) who live in small community group homes. This study aimed to identify individual and organisational factors that predict high levels of engagement. METHOD: Individuals with ID (n = 78), direct support professionals (DSPs; n = 174) and supervisors (n = 21) from 21 US group homes participated in the study. For each individual with ID, we conducted 80 min of observation at the person's residence. Information was also gathered regarding demographic characteristics, DSP competence, supervisor years of experience and management practices. Data were analysed using multilevel modelling. RESULTS: On average, individuals were engaged in social activities 12% of observed time and non-social activities 35% of the time. Individuals with greater adaptive skills who were supported by more competent staff showed significantly higher levels of social engagement. Individuals with less severe deficits in adaptive behaviours and less challenging behaviour showed higher levels of non-social engagement. Although none of the factors related to group homes were significant, 24% of the variance in non-social engagement existed among group homes. CONCLUSION: These results suggested that engagement is a dynamic construct. The extent to which an individual with ID is engaged in daily life is a result of interplay between the individual's characteristics and the group home environment. Future research is needed to investigate the influence of variables specific to the group home on the engagement level of individuals with disabilities.

Transition to retirement and participation in mainstream community groups using active mentoring: a feasibility and outcomes evaluation with a matched comparison group.

BACKGROUND: This paper reports on the feasibility and outcomes of a transition to retirement programme for older adults with disability. Without activities and social inclusion, retirees with disability are likely to face inactivity, isolation and loneliness. METHODS: Matched intervention and comparison groups each consisted of 29 older individuals with disability. There were 42 men and 16 women with a mean age of 55.6 years While attending their individual mainstream community group 1 day per week, intervention group participants received support from community group members trained as mentors. We assessed participants' loneliness, social satisfaction, depression, life events, quality of life, community participation, social contacts, and work hours before and 6 months after joining a community group. RESULTS: Twenty-five (86%) of the intervention group attended their community group weekly for at least 6 months. They increased their community participation, made an average of four new social contacts and decreased their work hours. Intervention participants were more socially satisfied post-intervention than comparison group members. CONCLUSIONS: The results demonstrate that participation in mainstream community groups with support from trained mentors is a viable option for developing a retirement lifestyle for older individuals with disability.

Reconstructing the fall: individual, behavioural and contextual factors associated with falls in individuals with intellectual disability.

BACKGROUND: Falls are a significant and recurrent problem for individuals with intellectual disability (ID). There has been little exploration of the fall event from the perspective of the individual who falls or their carers. Research has focused predominantly on personal risk factors, leaving the behavioural and contextual analysis of falls much less understood. This study aimed to identify these additional factors as well as briefly explore the fall experience for individuals and their carers. METHOD: A qualitative design was used incorporating fall reconstructions and ethnographic-style interviews conducted in the home setting. Nine people with ID and their carers/family member participated: five pairs were living at home and four were in out-of-family-home settings. Interviews were recorded, transcribed verbatim and major themes identified via thematic analysis. RESULTS: We identified 17 themes that contributed to falls and fell under the three headings of individual, behavioural or contextual factors. Themes include decreased physical capacity, unsafe behaviours, limited hazard awareness and the impact of others in the home on an individual's fall behaviours. Additionally, families and individuals identified a number of consequences and adaptations which they implemented to alleviate possible fall impact. CONCLUSIONS: Qualitative interviews, observational methods and carer assistance are valuable in offering insight into understanding the individual, behavioural and contextual factors associated with falls in people with ID. The fall reconstruction technique may be a useful supplement when evaluating intrinsic risk in programmes designed to reduce falls.

Responsiveness to self-report questions about loneliness: a comparison of mainstream and intellectual disability-specific instruments.

BACKGROUND: We compared responsiveness to two self-report assessments of loneliness: the UCLA Loneliness Scale (UCLALS) designed for the general community, and the Modified Worker Loneliness Questionnaire (MWLQ) designed for people with intellectual disability (ID). METHODS: Participants were 56 older adults with disability - 40 individuals with ID and 16 without ID. They were individually assessed on the MWLQ and the UCLALS. The difficulty of the items in both scales was evaluated in relation to readability, features of question wording, question length and response format. RESULTS: The UCLALS was more difficult than the MWLQ on each of the difficulty dimensions assessed. There was significantly greater responsiveness to the MWLQ than the UCLALS, especially among people with ID. CONCLUSIONS: To enable as many people with ID as possible express their views on loneliness, the ID-specific MWLQ is a much better choice. However, this choice comes at the cost of ready comparison to loneliness data for the general community, which is available for widely used assessments such as the UCLALS.

What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death.

BACKGROUND: The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death. METHOD: Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. RESULTS: There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. CONCLUSIONS: The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur.

'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying.

BACKGROUND: The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. METHOD: Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. RESULTS: While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. CONCLUSIONS: People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.

Engagement in retirement: an evaluation of the effect of Active Mentoring on engagement of older adults with intellectual disability in mainstream community groups.

BACKGROUND: As adults with intellectual disability age, retirement options need to be explored. One option is to attend a mainstream community group for retirees. Support within these groups could come from group members who are trained to act as mentors for the older adults with intellectual disability. This research evaluated a support training programme, Active Mentoring, which combines elements of Active Support and Co-worker Training. METHOD: Three older women with intellectual disability participated in a non-concurrent multiple baseline design. Effect size analyses (Percentage of Non-overlapping Data) were used to evaluate observational data. RESULTS: Active Mentoring was effective in increasing most types of engagement in activities, but there was no observed effect for social engagement. Mentor help also increased. CONCLUSION: Active Mentoring was effective in eliciting support from mentors, and in increasing activity engagement of older adults with intellectual disability in mainstream community groups.

Experiencing rights within positive, person-centred support networks of people with intellectual disability in Australia.

BACKGROUND: This research describes issues related to human rights as they arose within the everyday lives of people in nine personal support networks that included adult Australians with an intellectual disability (ID). METHOD: The research was part of a wider 3-year ethnographic study of nine personal support networks. A major criterion for recruitment was that people in these networks were committed to actively developing the positive, meaningful future of an adult family member with an ID. Data were collected from November 2007 to March 2011 via interviews, participant observations and analysed within the framework of situational analysis. Findings were checked with network members. RESULTS: The issue of rights was challenging to network members. Subtle rights violations could have a major impact on an individual with a disability. Network members worked to protect the rights of people with ID by building and maintaining an empathic and respectful support network, developing the person's self-confidence and autonomy and ensuring that the person with an ID was an active member of the personal support network. CONCLUSION: The maintenance of rights within a supportive environment remains a difficult task. It can be facilitated by a deep knowledge and respect for the person being supported, the promotion of his or her active participation in the planning and provision of support, and an experimental and reflective approach.

Choice of living arrangements.

BACKGROUND: The rights to choose where and with whom to live are widely endorsed but commonly denied to adults with intellectual disabilities (ID). The current study provides a contemporary benchmark on the degree of choice exercised by adult service users in the USA. METHOD: Data came from the National Core Indicators programme. Participants were 6778 adult service users living in non-family-home service settings in 26 US states. RESULTS: Most adults with ID did not participate in choosing where and with whom to live. Those with more support needs because of more severe ID and/or co-occurring conditions experienced less choice regarding living arrangements. Individuals living in their own home or an agency-operated apartment were more likely to choose where and with whom to live than individuals in nursing homes, institutions or group homes. However, few individuals with severe or profound ID chose where and with whom to live regardless of where they lived. CONCLUSIONS: In 2008, despite community-living policies that emphasise choice, many adult service users with ID in the USA experienced little or no choice about where and with whom to live, especially those individuals with more severe ID. Our findings provide a clear endorsement of policies promoting more individualised living settings, such as one's own home or an agency apartment, because these settings do provide substantially more choice about living arrangements.

Incidence of and risk factors for falls among adults with an intellectual disability.

BACKGROUND: Falls among people with intellectual disability (ID) occur at a younger age than the general population and are a significant cause of injury and hospitalisation. There is very limited research investigating risk factors for falls among people with ID and none with people living outside of formal care arrangements, either independently or with their family.We used a medical chart audit to identify the incidence and risk factors for falls among people with ID living in a variety of settings. METHODS: We retrospectively identified 114 consecutive patients, aged 18 years and over who attended a clinic for people with developmental disabilities within a 15-month period. Fall information was measured by carer recall of falls in the past 12 months. Potential risk factors were extracted from medical reports and a patient information questionnaire. Potential predictors were identified using univariate analysis and entered into a multiple logistic regression. RESULTS: Of 114 participants, 39 (34%) reported a fall in the previous 12 months.The number of reported falls was similar for formal care and non-formal care arrangements.The vast majority of fallers (84%) reported sustaining an injury from a fall and many potential risk factors were identified. Multivariate analysis revealed having seizures in the past 5 years, a history of fracture and increasing age were risk factors for falls. CONCLUSIONS: Falls are a significant health concern for adults with ID of all ages as a result of their incidence and the resulting injuries. Falls appear to be equally an issue for people residing in formal and non-formal care accommodation. Further research is needed to develop screening tools and interventions for this population.

Penile hygiene: puberty, paraphimosis and personal care for men and boys with an intellectual disability.

BACKGROUND: Supporting men and boys with an intellectual disability (ID) to meet their penile hygiene needs is perhaps one of the least acknowledged but most confronting issues facing care staff. The delivery of intimate hygiene can be a challenging topic particularly as it has been drawn into the emerging sexuality discourse and the ongoing abuse narrative. Compounding this challenge is the lack of guidance in intimate care for support staff. In addition, whereas the male with an ID outnumber the female, female care staff greatly outnumber male staff. Whether this situation affects outcomes for men and boys with an ID is unknown but it is an issue which should be examined. METHOD: This paper reports data from two separate studies, one quantitative the other qualitative, which sought to explore penile hygiene as a male health issue. RESULTS: Results show the practice of care staff to be inconsistent, the views and values of care staff to be divergent. Some patterns and contextual differences were identified depending upon the gender of care staff. An emerging dialogue described some of the positive contributions that male staff make to men and boys with an ID. CONCLUSIONS: The penile health needs of men and boys with an ID are being compromised by a lack of guidance, training, knowledge and limited gender-sensitive care.

Utility, economic rationalism and the circumscription of agency.

BACKGROUND: Great strides have been achieved over the past few decades in service provision for people with intellectual disability (ID). However, there has also been a growth in the use of economic rationalism and a related rise in managerialism in forming service provision outcomes. METHOD: An account of the focus on process and means of provision directed within the managerialist agenda to determine how individual authority has become subsumed within patterns of dependence. RESULTS: An underlying influence of utilitarianism has led to a focus on servicing the average through service provision trajectories which in turn have weakened the pace for social change and perpetuated a vulnerable conception of people with ID. CONCLUSIONS: There has been a qualification of the idealised intent of providing individualised support, choice and recognition of the moral worth of people with ID into relative features of equality. There remains an overriding static conception of the person with ID within funding frameworks and service provision which relies on economic and rationalist depictions of the individual.

Assessing opportunities for choice-making: a comparison of self- and staff reports.

Self-report responses by adults with mental retardation about the availability of choice were compared with staff responses. Self-reports and staff responses were in clear disagreement on 3 of 10 items. In each case subjects reported that they had significantly more choice than was perceived by staff members. These items involved issues of major life impact for which less choice was available than for other items. Intermingling self-report and third-party responses in research about choice seems unwise because their equivalence cannot be assumed. In contrast to some previous studies, high levels of choice were reported on most items.

Analysis of expenditures and outcomes of residential alternatives for persons with developmental disabilities.

Expenditures, staffing, and outcomes were examined for 116 adults with severe or profound mental retardation who moved from state institutions in Minnesota to various community living settings and a comparison group of 71 persons who remained institutionalized. Outcome variables included community access, social activities, community inclusion, family relationships, and choice. Comparison of participants' personal characteristics revealed no differences between groups, but several differences emerged when the community sample was grouped by residence size or public versus private ownership. Where necessary, covariance analysis was used to adjust for these preexisting differences. Community residences were less costly and had more favorable staffing and uniformly better outcomes than did institutions. Few outcome differences were evident between community residents when compared by residence size or service ownership.

Longitudinal study of institutional downsizing: effects on individuals who remain in the institution.

In a 4-year study we examined the longitudinal effects of deinstitutionalization programs on those who remain in institutions being downsized. Individual outcomes investigated were community access, social activities, community inclusion, family relationships, and choice. Effects of residential relocation on individual outcomes such as adaptive behavior were evaluated and total daily per-person expenditure on institutional services for participants was determined. Downsizing was associated with decreased community integration but no change in most other outcomes. Availability of therapy services fell over time, and individuals experienced many residential and day program moves within the institution. Per person expenditure on services increased substantially. Finally, no significant changes in adaptive behavior were associated with intrainstitutional moves.

Personal control and the ecology of community living settings: beyond living-unit size and type.

Personal control exercised by 74 adults from community living settings in Minnesota was evaluated. Comparisons between living-unit sizes or types controlled statistically for pre-existing differences in adaptive and challenging behavior. Individuals living semi-independently exercised more personal control than did residents of HCBS Waiver-funded settings, who had more personal control than persons from community ICFs/MR. Within the 1- to 5-person size range, size-related differences were detected in personal control. Using hierarchical regression, we found that personal characteristics, self-determination competencies, and environmental variables all made significant, unique contributions to predicting personal control. Path analysis also revealed that this range of variables was related to personal control. These findings strongly support an ecological approach to self-determination.