Search

As people with intellectual and developmental disabilities (I/DD) age, it is important that I/DD agencies are prepared to support healthy ageing in homes and in communities. This study explored supports and barriers to sustaining community-based health and participation initiatives (CBHPI) for people ageing with I/DD living in group homes managed by agencies. The study utilized interviews and photovoice with 70 participants--35 individuals with I/DD and 35 management/direct support agency staff. Data were analysed through content analysis and triangulation of data where five themes emerged: Agency values and policies related to healthy ageing; resources and staff competencies; communication between management and staff; community/university partnerships; and peer relations. Findings show that I/DD agencies and people with I/DD value CBHPI, but they find them difficult to sustain due to limited resources and lack of training specific to ageing with I/DD. Conducting system-level research within I/DD agencies to include first-person accounts of people with I/DD, staff and management provides insight on how to effectively support the needs of people with I/DD to improve their health and community participation as they age.

Background: The ageing of people with intellectual disabilities, involving consequences like dementia, creates a need for methods to support care staff. One promising method is Dementia Care Mapping (DCM). This study examined the effect of DCM on job satisfaction and care skills of ID-care staff. Methods: We performed a quasi-experimental study in 23 group homes for older people with intellectual disabilities in the Netherlands. Among staff, we assessed job satisfaction and care skills as primary outcomes and work experience measures as secondary outcomes (N = 227). Results: Dementia Care Mapping achieved no significantly better effect than care as usual (CAU) for primary outcomes on job satisfaction (MWSS-HC) and working skills (P-CAT). Effect sizes varied from -0.18 to -0.66. We also found no differences for any of the secondary outcomes. Conclusion: Dementia Care Mapping does not increase job satisfaction and care skills of staff caring for older people with intellectual disabilities. This result differs from previous findings and deserves further study.

A natural experiment contrasted the social relationships of people with intellectual disabilities (n = 110) before and after they moved from congregated settings to either personalized accommodation or group homes. Contrasts could also be drawn with individuals who had enduring mental health problems (n = 46) and who experienced similar moves. Face-to-face interviews were conducted in each person's residence on two occasions approximately 24 months apart. Multivariate statistical analyses were used to determine significant effects. Greater proportions of people living in personalized settings scored higher on the five chosen indicators of social relationships than did persons living in grouped accommodation. However, multivariate statistical analyses identified that only one in five persons increased their social relationships as a result of changes in their accommodation, particularly persons with an intellectual disability and high support needs. These findings reinforce the extent of social isolation experienced by people with disabilities and mental health problems that changes in their accommodation only partially counter.

Background: People with intellectual disabilities in staffed group homes often need lifelong support and dependency on others. Thereby, special demands are placed on staff and service managers to ensure opportunities for participation in everyday life. This study aims to explore how service managers promote participation in Swedish group homes for adults with intellectual disabilities. Method: A qualitative research design involving individual interviews with 14 service managers was used to gain an understanding of how the participation of adults with intellectual disabilities can be promoted in Swedish group homes. Results: The results comprise two main themes; Creating preconditions for participation and Barriers for promotion of participation. Conclusions: Service managers experienced that promoting service user participation in group homes was an important part of their responsibility. The findings indicate that structural strategies such as coaching, supervision and reflection are important and should be further developed.

Two non-U.S. quasi-experimental studies reported Active Support training was associated with increased engagement in individuals with IDD, but no randomized controlled trials (RCTs) exist. We evaluated effects of Active Support training on staff assistance, and social and nonsocial engagement in 75 individuals with intellectual and developmental disabilities (IDD) in U.S. group homes. We detected no significant effects of active support training. Individuals with more skills and less challenging behavior engaged more in nonsocial activities. Younger individuals with more skills living in homes with fewer staff changes were more socially engaged. Factors associated with nonsocial engagement mirrored those reported in Qian, Tichá, Larson, Stancliffe, & Wuorio, (2015). Staffing-related implementation challenges and statistical power limited our ability to detect differences.

Purpose: This study examines foster care reentry after adoption, in Illinois and New Jersey. The provision of services and supports to adoptive families have garnered recent attention due to concern about the long-term stability of adoptive homes. Method: This study used administrative data to examine the pre-adoption characteristics associated with post-adoption foster care reentry. Children were tracked longitudinally, using administrative data, for five to fifteen years (depending on their date of adoption), or the age of majority. Results: Results indicated that most (95%) children did not reenter foster care after adoption. Findings from survival models suggested key covariates that may help to identify children most at risk for post-adoption reentry: child race, age at adoption, number of placement moves in foster care, and time spent in foster care prior to adoption. Conclusion: Study findings may help identify families most at-risk for post-adoption difficulties in order to develop preventative adoption service.

Background: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. Methods: Data from 182 service users, 20-81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. Results: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). Conclusions: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.

Background: Peers living in the same group form important interaction partners for people with profound intellectual and multiple disabilities (PIMD). Given the severity of their disabilities, direct support persons (DSPs) play a significant role in facilitating interactions between these peers. This study explores the spontaneous interactions between persons with PIMD and the possibilities provided by DSPs related to physical positioning. Method: Observational data were obtained from 14 people with PIMD for three consecutive hours in a non-controlled situation. Results: Of all 213 observed interactions, 5.1% were with peers, 73.4% with DSPs, 14.9% with the observer, and 6.5% with others. In 61.3% of the observed timeframes, the participants with PIMD were positioned in a way that made it impossible to touch or/and to look at a peer. Conclusion: Generally, the observed positioning of the participants made contacts between peers nearly impossible. DSPs should create optimal conditions for interaction between peers.

Background: Research has shown Australian group homes, and supported living options, fail to support people with intellectual disabilities (IDs) to develop social connections. This pilot study evaluates the effectiveness of a visiting dog walking program to facilitate encounters with other community members. Method: Sixteen adults with IDs were assigned to one of two groups, matched on key characteristics. Group 1 had 14, 1-hour outings in the community with a dog and their handler; Group 2 had 14 outings with a handler alone, followed by an additional five outings with a handler and a dog. Within and between group differences were analysed according to number of encounters when a dog was present and absent. Qualitative data provided insights into the nature of these encounters. Results: The number of encounters was significantly higher when a dog was present than when participants went out into the community with a handler alone. This pattern was reflected in the qualitative data, which also suggested the presence of a dog helped to break social norms about speaking to strangers and discourage disrespect towards people with IDs. Conclusions: A dog walking program has the potential to encourage convivial encounters, which in the long term could be catalysts to help people with IDs build social connections in their communities; this should be further explored.

This article will give both examples and methods to use when providing services to individuals with a dual diagnosis of Down syndrome and Dementia. This is a prevalent issue that most care facilities are facing as the population with Down syndrome age. Staff training, schedule adjustments, living space adjustments and a new thought process regarding active treatment are essential for successful, quality care to take place.

The goal of this study was to utilize a phenomenological case study design to investigate the individual and social identity development of an adolescent male who had been placed in a high-security group home setting. The participant had been identified with emotional disturbance (ED), and 48, XYYY karyotype. The participant described his social and emotional development as being impacted by his environment, his level of personal control, and his view of the future. (Contains 1 table.)

We investigated the effects of video modeling on the percentage of correctly implemented problem-solving steps by staff in a group home for adults with developmental disabilities, using a nonconcurrent multiple baseline design across participants. The treatment consisted of staff watching a video model demonstrating the correct implementation of a problem-solving intervention (i.e., teaching clients to identify problems, possible solutions, and consequences to each solution, and to choose the best solution). The percentage of correctly implemented problem-solving steps increased for all participants, and the effect was maintained over time, generalized to novel problems, and generalized from role play with a researcher to actual clients. (Contains 2 figures.)

We evaluated the utility of an assessment for identifying tasks for the functional analysis demand condition with 4 individuals who had been diagnosed with autism. During the demand assessment, a therapist presented a variety of tasks, and observers measured problem behavior and compliance to identify demands associated with low levels of compliance or high levels of problem behavior (low-probability demands) and demands associated with high levels of compliance or low levels of problem behavior (high-probability demands). Results showed that clearer functional analysis outcomes were obtained for 3 of the 4 participants when low-probability rather than high-probability demands were used. (Contains 2 figures.)

Background: A key aim of public policy has been to move people with a learning disability from segregated settings into ordinary housing, with the expectation that they would become integrated in and accepted by the rest of society. Despite this policy, people with a learning disability have high rates of unemployment, social isolation, mental disorders and premature death. Aims: This raises questions about the dominant capitalist mode of care and makes it essential to consider alternative types of residence. Materials and Methods: This study reviews research into shared-care communities in which people with a learning disability share their lives with families and volunteers ("co-workers"), either in dispersed housing or in village settlements. Results: Reviews of research into types of accommodation for people with a learning disability have compared dispersed housing with "congregate" housing, finding that the former provide a better quality of life. However, they also found wide variations in outcome, which can be attributed to the heterogeneous range of accommodation categorised as "congregate." When shared-care communities are analysed separately, they were found to offer accommodation as homely as dispersed housing, with a similar lack of institutional practices. Residents in shared-care communities were also more likely than those in other types of accommodation to be involved in planning their own lives and in accessing professional health and social care. Research into shared-care communities has attributed these outcomes to the availability of meaningful and diverse employment, opportunities for friendship and long-term relationships with co-workers. Discussion: These conclusions are supported by the results of official inspections and by recent research, which has emphasised how the quality of life of residents with a learning disability is improved when there are long-term emotional bonds between staff and clients. It is concluded, therefore, that shared-care communities offer a viable alternative to traditional dispersed housing for people with a learning disability. Choice of accommodation has often been denied to people with a learning disability, even though the rest of the population now live in a wide variety of living circumstances. It is therefore recommended that public policy accepts the need for shared-life communities as one of a range of living options for people with a learning disability, rather than enforcing one type of accommodation deemed "normal.

Background: Paperwork is a key tool that transforms organizational intentions into actions in group homes, although prescriptive procedures may limit how frontline staff use it in practice. The aim of this study was to explore how frontline staff use paperwork in group homes for people with intellectual disability and identify practice implications. Method: Constructivist grounded theory methodology guided the research. Data collection included semi-structured interviews and participant observations. Coding, comparison and sorting methods were adopted to analyse how staff used paperwork. Results: Staff followed organizational paperwork rules when they aligned with their resident-focused approach to work. When they perceived rules to misalign with this approach, they managed paperwork by adjusting the time and place of completion, managing content, creating alternative tools and refusing completion. Conclusions: Staff purposefully managed paperwork rather than simply following procedures. Disability service organizations could develop flexible paperwork procedures and include frontline perspectives in paperwork development.

Purpose: Responding to social work's grand challenge of smart decarceration, this study investigated whether Family Centered Treatment (FCT), a home-based service for juvenile court-involved youth, is more effective than group care (GC) in reducing recidivism. Outcomes are juvenile readjudication and commitment to placement, and adult conviction and sentence of incarceration. Method: Data were drawn from service provider and state administrative databases. Propensity score matching was used to create a sample of 1,246 FCT youth and 693 GC youth. Cox proportional hazard models estimated time to the four outcomes. Results: FCT participants had a significantly lower risk of adult conviction and adult incarceration relative to youth who received GC. The findings for juvenile outcomes were nonsignificant. Discussion: FCT shows more favorable adult criminal justice outcomes than GC, making it a potentially effective community-based service to support smart decarceration for juvenile court-involved youth. [Paper presented at the Stockholm Conference on Behavioral and Social Intervention Research, 11-12 May, 2017.]

Background: Group home frontline staff have a critical role in implementing service policies, yet research typically examines implementation issues from an organisational perspective. The aim of this study was to explore the self-perception of frontline staff about their role in group homes for people with intellectual disability. Method: Constructivist grounded theory methodology guided the study. Data were collected with frontline staff through semistructured interviews and participant observations. Coding and sorting methods were used to analyse participants' self-perception. Results: Frontline staff felt they were valuable contributors who knew the service setting and residents well. Despite this staff felt powerless in their roles, excluded from organisational dialogue, stressed and exhausted. Conclusions: Frontline staff have critical insight into service implementation although disability service organisations may limit their capacity to contribute to this. Further action could explore new ways to better nurture frontline staff engagement in organisational dialogue.

Background: Good nutrition knowledge among carers of people with intellectual disability (ID) living in group homes is essential as they have a primary role in food provision for residents. Research on the nutrition knowledge of carers is limited. Method: This cross-sectional study assessed the level of general nutrition knowledge in a convenience sample of Australian carers (C) of people with ID and compared this to the general Australian community (CM). Nutrition knowledge was evaluated using the validated General Nutrition Knowledge Questionnaire. Total knowledge score as well as performance on instrument sub-sections (dietary guidelines, nutrient sources, healthy food choices and diet disease relationships) were assessed (expressed as %). Knowledge scores were adjusted for known confounders (age, sex, education level, BMI, living arrangement and English spoken at home) using generalised linear modelling. Results: A total of 589 participants were recruited (C: n = 40; CM: n = 549). Age (C: 40.8 ± 12.1 year; CM: 37.8 ± 13.3 years; P = 0.145), sex distribution (C: 62.5%; CM: 67.2% female; P = 0.602) and English spoken at home (C: 82.5%; CM: 89.6%; P = 0.183) were similar between groups, but BMI (C: 28.5 ± 5.7 kgm-2; CM: 25.3 kgm-2; P = 0.002) was significantly lower and tertiary education (C: 52.5%; CM: 85.1%; P < 0.0005) significantly higher for CM. Total knowledge score (C: 56.6 ± 12.6%; CM: 67.2 ± 12.6%; P < 0.0005) and performance on all instrument sub-sections (P = 0.004) were significantly lower for carers. This remained after confounder adjustment except for the knowledge of dietary guidelines sub-section (P = 0.116). Conclusion: Limited carer nutrition knowledge may compromise their ability to plan and adapt meals to support a healthy and appropriate diet for people with ID in group homes.

A natural experiment contrasted the self-rated well-being of people with intellectual disabilities (n = 75) and those with enduring mental health problems (n = 44) after they moved to new accommodation and support options, while others remained in congregated settings or living in the family home. Most support staff also provided well-being ratings. In personalized arrangements, personal well-being was significantly higher than in congregated settings; particularly for people with intellectual disability who had higher support needs compared to people with mental health problems. Moving to a group home also brought some improvement in the well-being ratings of people with intellectual disability but only for those with higher support needs. Such moves seemed to lead to a decline in well-being for those with mental health problems. There were marked discrepancies between ratings given by the person with those of staff. The well-being measure shows promise for use in further comparative and longitudinal studies.

Background: Living active adult lives is both a value and a right, but the right to do so is associated with restrictions among adults with learning disabilities. This research aimed to capture professionals' understanding and perception of active adult living for people with learning disabilities living in clustered housing in a Norwegian community. Materials and Methods: Field notes and transcripts of interviews were analysed by systematic text condensation based on Giorgi's psychological phenomenological analysis, with focus on the professionals' own expressions about their experiences and not an exploration of deeper meanings. Results and Discussion: The analysis identified four main themes: (i) active adult life as independent living and self-determination, (ii) choice of lifestyle, (iii) accommodation and privacy and (iv) the role of professionals. Results are discussed against concepts like dependence, independence and interdependence. Conclusion: The role of professionals and structural conditions for support and care is crucial for how active adult living is realised for people with learning disabilities. The results highlight the need for further discussions of conditions for active adult living in people with learning disabilities.

Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30-35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships.

Background: Paperwork can transform organisational aims into action in group homes, but it can also be problematic for staff. The aim of this study was to explore frontline staff perspectives on paperwork in group homes for people with intellectual disability. Methods: Constructivist grounded theory methodology guided the study. Data were collected from 29 participants through semi-structured interviews, participant observations and journaling. Coding and sorting methods were used to analyse participants' perspectives. Results: Staff have nuanced paperwork perspectives. They described and evaluated paperwork in terms of its value and fit with resident-focused practice. They identified gaps in paperwork and reimagined its design and use. Conclusions: Frontline staffs' reflection suggests some paperwork hinders them from supporting residents well. This suggests organisations could consult better with staff to design paperwork that has a goodness of fit to their practice. Further research could explore how staff manage the limiting characteristics of paperwork.

Background: There is a lack of health promotion programming designed to change the physical activity environment of the group home setting. The Menu-Choice programme assists staff in creating physical activity goals alongside residents with intellectual disabilities and provides strategies to incorporate activity into the group home schedule. The purpose of this study was to complete a process evaluation of Menu-Choice utilizing qualitative methods. Methods: Twelve participants, who completed a 10-week pilot intervention (n = 7 staff, mean age 42; n = 5 residents, mean age 52), participated in face-to-face interviews. Participants represented five group home sites involved in the intervention. Results: Meta-themes included: (i) Programme training, (ii) Programme implementation, (iii) Programme physical activity, (iv) Programme barriers, (v) Programme facilitators and (vi) Programme feedback. Conclusions: Changes in programme training and simplified programme materials are needed to accommodate identified barriers for implementation. The importance of obtaining increased agency support and policy change is highlighted.

Background: The purpose of this study was to uncover and understand factors influencing quality of care received by adults with developmental disabilities and/or mental health disorders living in group homes. Methods: The present authors conducted a secondary analysis of data from nine focus group discussions with adults with developmental disabilities and/or mental health disorders, and their family and paid caregivers (N = 52). To focus the analysis, the present authors drew on the research literature to craft a model of quality of group home care using concepts of social inclusion and self-determination, and corresponding staff approaches that include active support and person-centred care. Results: Social inclusion and self-determination for adults in group homes are facilitated by staff approaches and manifest in residents being understood and experiencing security and freedom. Conclusions: The present authors offer recommendations for group home resources, training, communication and outcome measures that promote residents' being understood and experiencing security and freedom.

Group homes are a frequently used but controversial treatment setting for youth with mental health problems. Within the relatively sparse literature on group homes, there is some evidence that some models of treatment may be associated with more positive outcomes for youth. This article explores this possibility by examining differences across time for youth served in group homes utilizing the Teaching Family Model (TFM) and geographically proximate homes using more eclectic approaches. Data come from a longitudinal quasi-experimental study that included 554 youth. Results suggest that youth showed, on average, significant and rapid improvement during initial months in a group home. Improvement did not differ for TFM and non-TFM homes during this initial period. Post-discharge results, though, show that TFM was associated with continued improvement after discharge and significantly better outcomes by 8 months post-discharge. Results also discuss youth-level factors that may influence outcomes as well as need for additional work to more fully understand processes and practices that are key for maximizing and maintaining youths' positive outcomes during and after group home placements.

Social support and psychiatric severity are known to influence substance abuse. However, little is known about how their influences vary under different conditions. We aimed to study how different types of social support were associated with substance abuse outcomes among persons with low and moderate psychiatric severity who entered Sober Living Houses (SLHs). Two hundred forty-five individuals entering 16 SLHs were interviewed at baseline and 6, 12 and 18 months. The Brief Symptom Inventory assessed psychiatric symptoms and the Important People Instrument and a modified AA Affiliation Scale assessed social support. Social support variables predicted substance abuse outcomes for persons with low and moderate psychiatric severity. However, they were the strongest and most consistent predictors for the low severity group.

Background: Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised. Method: Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods. Results: Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness. Conclusions: If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships.