Search

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.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.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%).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.

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.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.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.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.

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).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.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.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.

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).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.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.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.

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.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.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.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.

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.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.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.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.

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.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.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.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.

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.

Levels of personal control exercised by 76 adults with mental retardation were contrasted by substitute decision-making status. Individuals with no guardian or conservator exercised more personal control than did those with a conservator, who exerted more personal control than did participants with a guardian. Similar group differences in self-determination competencies were also observed. When self-determination competencies were controlled statistically, significant group differences in exercise of personal control remained. Restrictive substitute decision-making status, inappropriate to current competencies, may have constrained individuals' levels of personal control. Reviewing substitute decision-making status on a regular basis and limiting or removing guardianship/conservatorship when it is not appropriate, may enhance personal control.

Effectiveness of challenging behavior Individualized Habilitation Plan (IHP) objectives in residential settings was examined. We evaluated three indicators of successful intervention: discontinuation of challenging behavior IHP objectives, change in challenging behavior over time, and frequency of one-to-one crisis intervention and found little evidence of effective intervention. Less than a fourth of participants had a challenging behavior objective discontinued within a year. There was no significant change in challenging behavior from one annual assessment to the next, although the decrease in asocial challenging behavior approached significance. Frequency of crisis intervention also did not change significantly over time. These findings suggest that most challenging behavior IHP objectives are ineffective in reducing challenging behavior.

Predictors of interventions for challenging behavior by residential service providers were examined. Three forms of intervention investigated were (a) Individualized Habilitation Plan (IHP) objectives concerning challenging behavior, (b) one-to-one crisis intervention in the preceding 30 days, and (c) services from behavior management professionals in the preceding 6 months. Findings across these three interventions were largely consistent. Externalized challenging behavior (outwardly directed aggressive or disruptive behavior aimed at other people or objects) was consistently associated with all interventions. The implications of these findings for service providers and service users are discussed.

Individual Habilitation Plan objectives for adults with mental retardation living in institutional or community settings were evaluated for effectiveness and quality. Effectiveness was assessed by contrasting change in relevant outcomes over time for participants with and without individual plan objectives in specified content areas. No significant change in outcomes associated with having an objective was detected for any of the content areas. Except for functionality, ratings of individual plans on all quality domains were poor. Regression analyses mostly failed to show any significant relationship between quality domain ratings and outcomes, although there was weak but inconsistent evidence for validity of the technical adequacy and data-collection quality domains. Findings present a challenge to current expectations that presence and quality of IHP objectives are associated with improved outcomes.

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.

Day-to-day choices available to former institution residents with severe/profound developmental disabilities (movers) were assessed before and after deinstitutionalization and compared with peers who remained in the same institutions (stayers). Data were gathered annually for both groups for 3 years after baseline. Personal characteristics of the two groups did not differ significantly at baseline, except that stayers exhibited more challenging behavior. This was controlled by using baseline challenging behavior as a covariate in group comparisons. Overall, movers exercised significantly more choice, although groups did not differ at baseline. Effects of deinstitutionalization did not differ with level of disability. However, the absolute level of choice available to both movers and stayers was very low.

The impact of size of residence on residents' opportunities for choice was examined for Australian adults with mental retardation who lived in staff-supported community residences housing one to five residents. Significantly greater choice was exercised by individuals living in smaller settings, even when personal characteristics of individual residents were controlled statistically. Staff presence was confounded with living-unit size. Analyses including both staff presence and living-unit size revealed strong effects of staff presence, with more choice displayed in settings with longer periods when no staff members were present. Size effects were less evident once the variability associated with staff presence had been accounted for. Results suggest that both staff presence and living-unit size are important predictors of choice.

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.