Article

Uncovering Dimensions of Culture in Underperforming Group Homes for People with Severe Intellectual Disability

Authors:
To read the full-text of this research, you can request a copy directly from the authors.

Abstract

Abstract Culture recurs as an important but under-investigated variable associated with resident outcomes in supported accommodation for people with intellectual disability. This study aimed to conceptualize the potential dimensions of culture in all group homes and describe the culture in underperforming group homes. A secondary analysis, using an inductive interpretative approach, was undertaken of a large qualitative data set from a study that had used ethnographic and action research methods to explore the quality of life outcomes for residents in 5 small group homes. Five categories were developed: misalignment of power-holder values with organizations espoused values, otherness, doing for not with, staff centered, and resistance. Differences from institutional culture are discussed, and the potential of the findings as a starting point to consider culture in high performing group homes and develop a quantitative measure of culture.

No full-text available

Request Full-text Paper PDF

To read the full-text of this research,
you can request a copy directly from the authors.

... Dass die Lebensqualität von Menschen mit intellektueller Beeinträchtigung, die von Wohndiensten unterstützt werden und häufig in Wohneinrichtungen leben, stark variieren kann, wurde von verschiedensten Forscher*innen um die Jahrtausendwende nachgewiesen (Emerson und Hatton 1996;Young und Ashman 2004;Kozma et al. 2009;Bigby et al. 2012b, S. 452, Bigby und Beadle-Brown 2016Bigby und Beadle-Brown 2018, S. 182-183). Diese Lebensqualitätsunterschiede variieren von Wohngruppe zu Wohngruppe und zwischen den Organisationen unterschiedlicher Wohndienste der Behindertenhilfe (Bigby und Beadle-Brown 2018, S. 183). ...
... Sozialpsychologische Merkmale von sozialen Einrichtungen rückten erneut in den Fokus, als Erving Goffman im Rahmen seiner Forschung zur totalen Institution (1961,1978,2009) auf negative Arbeits-und Verhaltensweisen der unterstützenden Mitarbeiter*innen im Umgang mit Bewohner*innen verwies (Bigby et al. 2012b, S. 453). Im Zusammenhang mit Vorwürfen von Fehlverhalten und Missbrauchsfällen durch unterstützende Mitarbeiter*innen wurden Merkmale einer Kultur in den jeweiligen Einrichtungen identifiziert, die diese negativen Arbeits-und Verhaltensweisen fördern (Bigby et al. 2012b;Hutchinson und Stenfert-Kroese 2015;Cambridge 1999;Marsland et al. 2007). ...
... Wegweisend sind die Studienergebnisse der australisch-englischen Forschergruppe um Christine Bigby und Julie Beadle-Brown (u. a. Bigby et al. 2012b), die im Folgenden ausführlicher dargestellt werden. 5 Der Organizational Culture Inventory (OCI) von Cooke und Lafferty (1987) misst die Kultur mithilfe von zwölf Kategorien von Verhaltensnormen, die drei breiteren Kulturtypen zugeordnet sind: konstruktiv, passiv/defensiv und aggressiv/defensiv (Cooke und Szumal 2000, S. 147) 6 Der COMPASS von Cragg und Look (1992) wurde entwickelt, um zu bewerten, inwieweit das Leben der Menschen mit intellektueller Beeinträchtigung mit dem Normalisierungsprinzip übereinstimmt (Gillett und Stenfert-Kroese 2003, S. 280). ...
Chapter
Full-text available
Zusammenfassung Viele Menschen mit intellektueller Beeinträchtigung sind für ihre individuelle Lebensführung auf die Unterstützung professioneller Assistent*innen angewiesen. Die Assistent*innen arbeiten überwiegend in Mitarbeiterteams, die in Organisationsstrukturen und -hierarchien von Wohndiensten eingebunden sind. Die Anleitung und die Zusammenarbeit in diesen Mitarbeiterteams spielen eine zentrale Rolle für die Planung und Umsetzung einer personenorientierten Unterstützung und damit für die individuelle Teilhabe und Lebensqualität der Bewohner*innen bzw. Mieter*innen. Mit dem Konzept der Organisationskultur können Werte, Haltungen und Arbeitspraxen in Wohndiensten, die sich im alltäglichen Handeln und Denken der Mitarbeiter*innen zeigen, besser verstanden werden. Auf diese Weise werden die unausgesprochenen und weniger sichtbaren Anteile, die sich in der unterstützenden Arbeitspraxis widerspiegeln und mögliche Barrieren darstellen, (er)fassbar und verständlich. Das eigene Handeln wird überprüfbarer und die Weiterentwicklung von Teams und Organisationen kann befördert werden. Im deutschsprachigen Raum gab es bislang kein Messinstrument zur Erfassung der Organisationskultur in Wohndiensten. In Kooperation mit Dr. Humphreys und Prof. Bigby (LaTrobe University Melbourne) ist mit der Teamkulturskala für Wohndienste (TKS-W) ein deutschsprachiges Messinstrument entstanden, das empirisch überprüft ist. Die TKS-W ist im Anhang abgedruckt. Das Instrument kann von sozialen Organisationen dazu genutzt werden, die Organisationskultur in Wohndiensten zu diagnostizieren und partizipativ Interventionen zu ihrer Verbesserung zu planen und einzuleiten.
... Community living is expected to provide greater person-centredness, community participation, and choice, and be free of the regimentation of institutions. However, institutional practices persist in some staffed community-living settings, such as group homes (Bigby, Cooper, & Reid, 2012;Bigby, Knox, et al., 2012). Kozma et al.'s (2009) review of deinstitutionalisation research concluded that most community-living residents are better off than institution dwellers, but there is considerable variability in outcomes among community-living settings, with staff support practices being an important influence on outcomes. ...
... An example is all group home residents being required to attend a community outing together irrespective of each person's interest in the activity or preferences for companions. Bigby, Knox, et al. (2012) examined staff working practices in Australian group homes that had poorer resident outcomes, such as community participation. They found group treatment to be a key dimension of detrimental institution-like, staff-centred working practices and reported that 'group treatment was particularly integral to activities that occurred outside the house' (p. ...
... However, we had no data on other types of block treatment, so could not test these relationships empirically. Bigby, Knox, et al. (2012) found that work practices in poorly performing group homes prioritised staff preferences, convenience, and needs. For example, some staff considered that taking an individual client into the community was unfair on the staff member who remained at home with the other residents, so all staff and residents had to go out together (Bigby, Knox, et al., 2012). ...
Article
Full-text available
Background: Requiring adults with intellectual and developmental disabilities to go on community outings with co-residents and staff is contrary to community-living policy's focus on person centredness and choice of activities/companions. Method: We analysed 2018-19 National Core Indicators data from 36 US states concerning 7968 adults living in staffed, non-family, multi-client settings. The focus outcome was being able to stay home if you want when others in your home go out. Results: The 42.0% of participants who could stay home were more likely to go out with friends, family or alone, and less likely to go out with staff. Those who could stay home participated in a similar variety of community activities and went out more often to shop or for errands. Conclusions: Individuals who could stay home likely had more choice about where, when and with whom they went out. Strategies for greater person-centredness are proposed.
... Although the concept of culture has been frequently mentioned as an important issue in terms of research about services for people with ID and ASD-in terms of measurement of prevalence, detection and diagnosis to some extent, and support services including especially residential or day programs-a variety of definitions of culture have been used and in many instances culture has been mentioned but not actually taken into account in analysis, evaluation, or planning. Bigby et al. [1] developed a definition of culture that is useful for evaluating and improving support services (including residential and day programs) for people with ID and ASD. In addition to a formal culture as endorsed by an overarching institution that provides administrative indications and proposes the model of care to be implemented, there is also an informal culture that is expressed through what care professionals and teams do in their day-to-day activities in order to implement this model of care (or often, not implement or at least not implement entirely) [1]. ...
... Bigby et al. [1] developed a definition of culture that is useful for evaluating and improving support services (including residential and day programs) for people with ID and ASD. In addition to a formal culture as endorsed by an overarching institution that provides administrative indications and proposes the model of care to be implemented, there is also an informal culture that is expressed through what care professionals and teams do in their day-to-day activities in order to implement this model of care (or often, not implement or at least not implement entirely) [1]. These authors adapt a definition proposed by Schein (1992) which states that culture is "A pattern of shared basic assumptions that the group learned as it solved its problems of external adaption and internal integration, that has worked well enough to be considered valid and, therefore, to be taught to new members as the correct way to perceive, think, and feel in relation to those problems" (Schein 1992, p. 12, cited in Bigby et al. [1]). ...
... In addition to a formal culture as endorsed by an overarching institution that provides administrative indications and proposes the model of care to be implemented, there is also an informal culture that is expressed through what care professionals and teams do in their day-to-day activities in order to implement this model of care (or often, not implement or at least not implement entirely) [1]. These authors adapt a definition proposed by Schein (1992) which states that culture is "A pattern of shared basic assumptions that the group learned as it solved its problems of external adaption and internal integration, that has worked well enough to be considered valid and, therefore, to be taught to new members as the correct way to perceive, think, and feel in relation to those problems" (Schein 1992, p. 12, cited in Bigby et al. [1]). Adapting Schein's ideas, Bigby et al. [1] posit three levels of culture: artifacts (visible organizational structures and processes); espoused values (strategies, goals, philosophies or espoused justifications); and basic underlying beliefs, perceptions, and feelings, which are unconscious or taken-for-granted, for example, "local" common sense among the staff. ...
Chapter
Culture and contextual factors are inter-related fundamental frameworks for a correct conceptualization of intellectual disability (ID), autism spectrum disorders (ASD), and other neurodevelopmental disorders as well as for adequate provision and planning of mental health services. Implications on grading of individual functioning impairment, support needs, and quality of life are also relevant.In many countries, there is a lack of a public health approach and population-level screening for neurodevelopmental disorders, which leads to a lack of recognition of the need for treatment or services, or delays in their use. In addition, especially in lower- and middle-income countries, current, evidence-based tools for diagnosis are inaccessible due to their high cost and are seldom used. Also, most of these tools are developed in Western world, and very limited research is done on validity of these tools in developing countries. Services that facilitate independent living and community integration for people with ID and ASD and their families may not be available, depending on the context; this is especially true in lower- and middle-income contexts, such as Africa, Latina America, and some parts of Asia.Informal caregiving of people with ID and ASD exists in all cultures, but type and level vary from culture to culture. The burden of informal caregiving also varies depending on sociocultural issues as well as on existing policies and services. In some cultures, caregiving may be expected from family members (especially women), while in other contexts placing people with ID (and sometimes people with ASD) in “professional,” often institutionalized, care may be acceptable or even promoted. In addition, a cultural issue such as whether there is an extended family network participating in caregiving, or a lone informal caretaker, can have a significant effect on caregiver stress and the burden implied by care. The existence, quality, and availability of different types of public services and assistance will also affect caregiving and caregivers. Research on caregiving for people with ID and ASD focusing on both positive and negative impacts is needed to provide inputs for services and programs that can build on caregiver strengths in different cultures.Organizational culture within programs that provide services or care for children and adults with ID and ASD has an important impact on service users. This includes group homes of different sizes, special education schools or educational programs mainstreamed into regular schools, occupational services, etc. Different types of organizational culture (as lived and acted out by program staff) can influence the quality of the services provided and determine whether a truly humanistic and person-centered and strength-based approach is implemented. Clinicians and other care providers can improve practice by being aware of cultural issues and how they affect services and programs as well as considering each person with ID and/or ASD they are treating as an individual who lives in a specific social and cultural milieu. This is part of what is implied in providing person-centered care.KeywordsIntellectual disabilityAutism spectrum disorderCultural issuesIndependent livingCommunity inclusionOrganizational cultureInformal caregivingLower-income countriesMiddle-income countriesAfricaLatin AmericaAsia
... positive attitudes towards residents, acknowledgment and attendance to difference, recognition and respect for service-user preferences, intrinsic motivation, confidence to challenge bad practice and having a positive relationship with senior colleagues, whereby staff felt listened to and valued (Bigby et al., 2012;Bigby & Beadle-Brown, 2016;Calcraft, 2007;Gillett & Kroese, 2003;Hutchison & Kroese, 2016). McCartney and Campbell (1998) shared responsibility for practice quality, enabling teamwork and person centered working practices (Bigby et al., 2012;Bigby & Beadle-Brown, 2016;Calcraft, 2007;Cambridge, 1999;Furey et al., 1994;Hutchison & Kroese, 2016;Jones & Kroese, 2006;Rees & Manthorpe, 2010;Rytterström et al., 2013). ...
... positive attitudes towards residents, acknowledgment and attendance to difference, recognition and respect for service-user preferences, intrinsic motivation, confidence to challenge bad practice and having a positive relationship with senior colleagues, whereby staff felt listened to and valued (Bigby et al., 2012;Bigby & Beadle-Brown, 2016;Calcraft, 2007;Gillett & Kroese, 2003;Hutchison & Kroese, 2016). McCartney and Campbell (1998) shared responsibility for practice quality, enabling teamwork and person centered working practices (Bigby et al., 2012;Bigby & Beadle-Brown, 2016;Calcraft, 2007;Cambridge, 1999;Furey et al., 1994;Hutchison & Kroese, 2016;Jones & Kroese, 2006;Rees & Manthorpe, 2010;Rytterström et al., 2013). Protective factors created a caring culture characterised as coherent, respectful, enabling for service-users and motivating for staff. ...
... Furthermore, staff should have a good knowledge of the service-users they are working with and ensure the service-user's interests are identified and prioritised through reflective practice (Bigby et al., 2012). ...
Article
Background The abuse of adults with intellectual and developmental disabilities in care services seems to be relatively common, although there are anecdotal suggestions that abuse may be predictable and preventable. Method Evidence related to how abuse is detected and prevented within services was reviewed. Database and ancestry searches were conducted, and the methodological quality of studies assessed using the mixed methods appraisal tool. Results A total of 48 articles were reviewed. The characteristics of victims, perpetrators and organisations were summarised. Several recommendations for how abuse can be detected and prevented were made, including better staff training, supervision and monitoring of services. The quality of studies limits the reliability and validity of research findings. Conclusion Risk and protective factors related to the abuse of adults with intellectual and other developmental disabilities remain largely consistent. Further research is required to support the implementation of recommendations aimed to detect and prevent abuse.
... For example, low-performing group homes with less community activities for residents tend to have staff who regard residents as different and prioritise staff's interests over residents' interests. These staff members also feel isolated from the rest of the organisation (Bigby, Knox, Beadle-Brown, Clement, & Mansell, 2012;Bigby, Knox, Beadle-Brown, & Clement, 2015;Gillett & Stenfert-Kroese, 2003). In contrast, in higher-performing group homes with respect to quality of life outcomes for residents, staff members have emotional bonds with their residents, who are regarded as being 'like us' (i.e. they have ordinary lives, need human company), which is promoted by, for example, an experienced staff member who is always present to teach and monitor staff members . ...
... A strong, authentic organisational mission statement stimulates, shapes and reinforces staff's behaviour and attitudes, as is the development and consistent implementation of organisational procedures to monitor and direct staff behaviour (Bigby et al., 2012;Bigby et al., 2015;Walker, 2012). Bigby et al. (2015) demonstrated the tension between an orientation programme for new staff focused on values as stated in a mission statement, i.e. positive attitude towards residents with ID, and an introductory programme focused on procedures, i.e. focused on risk management. ...
... Culture. Culture is a key factor affecting staff members' behaviour and residents' quality of life (Bigby et al., 2012;Felce et al., 2002;White et al., 2003). Bigby et al. (2012;Bigby et al., 2015) identified five dimensions of group home cultures for residents with ID: (1) alignment of power-holders' values, (2) regard for residents, (3) perceived purpose, (4) working practices, and (5) orientation to change and innovative ideas. ...
Article
Full-text available
Background.-This literature review explores the relationship between the organisational environment of residential disability services and challenging behaviour in people with intellectual disabilities (ID) using Bronfenbrenner's ecological theory as a theoretical framework. Method.-Literature published between 2000-2016 was retrieved, using a scoping study with the search terms 'intellectual disability', 'challenging behaviour', and 'organisation'. Results.-At all layers of Bronfenbrenner's ecological theory, relationships were identified. Organisational aspects affect staff and residents with ID and challenging behaviour ranging from overall disability policy and budget systems (macrosystem), to organi-sational philosophy, leadership, power structure, staff coaching and working methods (exosystem), to staff beliefs and attitudes (microsystem) and client characteristics (ontosystem). Conclusions.-The use of an ecological model for residents with ID and challenging behaviour helps to identify organisational environment aspects that influence challenging behaviour in residents with ID. Understanding organisational environments in terms of their ecology enhances evidence-based provision of quality supports to this population. Mots clés : Comportements-défis Environnement organisationnel Déficience intellectuelle Théorie écologique Revue de littérature r é s u m é Contexte.-Exploration bibliographique sur la question de la relation entre facteurs organisationnels et comportements-défis au sein des services pour personnes atteintes d'une déficience intel-lectuelle. Méthode.-Des publications entre 2000 et 2016 ont été examinées à partir de mots-clés dont déficience intellectuelle, comportements-défis, besoins spéciaux, organisation, service. Les résultats ont été classifiés et interprétés suivant le modèle écologique de Bronfen-brenner. Résultats.-Des facilitateurs et des barrières ont été identifiés à chaque niveau du modèle. Les facteurs d'organisation les plus importants sont : le modèle de leadership, les méthodes de travail du personnel d'accompagnement et la gestion du service. Conclusion.-Le modèle écologique est utile pour compren-dre les relations entre des comportements-défis d'utilisateurs et l'organisation d'un service, et peut contribuer à la qualité des services comme à la qualité de vie des personnes concernées.
... They found that the residential unit with the more positive culture, as measured on the Organizational Culture Inventory, had higher QOL outcomes. More recently, Bigby and colleagues (Bigby & Beadle-Brown, 2016;Bigby, Knox, Beadle-Brown, Clement, & Mansell, 2012) conducted two ethnographic studies of five underperforming and three better performing group homes for people with severe intellectual disabilities. They identified five dimensions of organizational culture in group homes. ...
... Although suggestive of organizational culture accounting for differences in residents' QOL outcomes, the design of these previous studies (Bigby & Beadle-Brown, 2016;Bigby et al., 2014;Bigby et al., 2012;Gillett & Stenfert-Kroese, 2003) precluded determining whether culture predicts QOL outcomes. Finding a way to statistically test for a predictive relationship between culture and QOL outcomes would offer the potential to develop strategies to enhance service delivery and residents' QOL. ...
... Finding a way to statistically test for a predictive relationship between culture and QOL outcomes would offer the potential to develop strategies to enhance service delivery and residents' QOL. Building on Bigby and colleagues' (Bigby & Beadle-Brown, 2016;Bigby et al., 2012) proposed dimensions of group home culture, Humphreys, Bigby, Iacono, and Bould (2020) developed the Group Home Culture Scale (GHCS) to provide a quantitative measure of staff perceptions of group home culture. The GHCS comprises seven dimensions and provides a means to examine the relationship between culture and residents' QOL outcomes. ...
Article
Full-text available
Background Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes. Method The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL‐dependent variables. Results Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents’ engagement in activities. Supporting Well‐Being significantly predicted residents’ community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making. Conclusions The findings suggest that strategies to improve Effective Team Leadership and Supporting Well‐Being dimensions of culture may contribute to enhancing certain QOL outcomes.
... Using an ethnographic approach, and Schein's (2010) definition of culture, Bigby and colleagues (Bigby & Beadle-Brown, 2016;Bigby, Knox, Beadle-Brown, & Clement, 2015;Bigby, Knox, Beadle-Brown, Clement, & Mansell, 2012) conducted two studies in five underperforming and three better performing group homes for people with severe intellectual disabilities. They identified five dimensions of culture: (a) alignment of power holders' values, (b) regard for residents, (c) perceived purpose, (d) working practices and (e) orientation to change and new ideas. ...
... Furthermore, Bigby, Knox, Beadle-Brown, and Bould (2014) showed that the residents who lived in the group homes with more positive cultures had higher QOL. Bigby and colleagues (Bigby & Beadle-Brown, 2016;Bigby, Knox, et al., 2012) suggested that the dimensions they identified could provide a basis to develop a quantitative measure of organizational culture in group homes, with potential advantages over the generic instruments used to date. They further argued that such an instrument would be more likely to point to relevant implications for service delivery, and be more translatable into strategies to improve culture than generic instruments. ...
... This study aimed to develop the type of instrument for measuring culture in group homes suggested by Bigby and colleagues (Bigby & Beadle-Brown, 2016;Bigby, Knox, et al., 2012). The definition of organizational culture used required concepts that could be more readily measured using quantitative methods, than those in Schein's (2010) definition, such as staff members' assumptions, which require intensive observations and interviews to be identified. ...
Article
Full-text available
Background: Organizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under-researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure. Method: The Group Home Culture Scale (GHCS) was developed using a theory-driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front-line staff were used for exploratory factor analysis. Results: The content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92. Conclusions: The GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL.
... These individuals are at increased risk for premature morbidity or mortality associated with preventable illness or deterioration (3)(4)(5)(6)(7)(8)(9)(10)(11) and have a 20year decrease in life expectancy (12). Adults with IDD are also at risk for neglect and mistreatment, a finding documented across multiple countries and in a variety of care settings (13)(14)(15)(16); key contributing factors have been identified (13,(17)(18)(19)(20)(21). Thus, adults with IDD represent a large and vulnerable population that experiences disparities in health and overall well-being. ...
... Protective factors include positive attitudes of the staff toward the residents, value congruence and the perception of a relationship [reviewed in Collins and Murphy, 2021] (13,19,22). Conversely, a perception of 'otherness' , 'resistance' or an attitude of 'staff-centeredness' were associated with worse care performance (18). Care workers in under-performing living situations were more likely to consider the service user as 'too disabled' or lacking skills (23); in some instances, individuals with IDD may not even be considered as persons. ...
Article
Full-text available
Adults with intellectual or developmental disability (IDD) comprise 1–2% of the population worldwide. IDD is a significant risk factor for premature morbidity or mortality. This is likely due in part to preventable health conditions, which are modifiable with the intervention of direct care providers in areas including nutrition, promotion of an active lifestyle and effective identification of health or functional deterioration. Adults with IDD are also at increased risk for neglect or mistreatment, a finding that has been documented across multiple countries and in a variety of care settings. Contributing factors include resource availability, lack of person-centered care, management culture and care worker training. Practical and economical interventions may address the known disparities and challenges facing the large community of adults with IDD. To promote person-centered care, improve record-keeping/documentation, and aid in protecting the health and safety of this vulnerable population, we propose incorporation of a video into the evaluation of adults with IDD living outside the home.
... More recently, researchers have examined dimensions of culture associated with service quality and QOL outcomes for people with intellectual disabilities. In an ethnographic study of five underperforming group homes, Bigby et al. (2012) identified five dimensions of culture proposed to have relevance to all group homes: (a) alignment of power-holders' values with the organisation's espoused values, (b) regard for residents, (c) perceived purpose, (d) working practices, and (e) orientation to change and new ideas. The descriptions of the culture in the underperforming group homes arguably resembled some of the characteristics of culture identified in the studies into abuse, suggesting that there are patterns across poor quality services. ...
... Drawing on the findings from Bigby and colleagues (Bigby & Beadle-Brown, 2016;Bigby et al., 2012), Humphreys et al. (2020b) developed the Group Home Culture Scale (GHCS) to provide a quantitative measure of staff perceptions of culture. Using the GHCS, data from 23 group homes and multilevel modelling, Humphreys et al. (2020a) examined dimensions of culture as predictors of QOL outcomes. ...
Article
Full-text available
Background Organisational culture in group homes for people with intellectual disabilities has been identified as an influence on service delivery and staff behaviour. The aim was to examine patterns of culture across group homes in disability organisations. Method The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture. Data were available from 260 staff who worked across 58 group homes managed by eight organisations. Using scatterplots and measures of dispersion, the scores on the seven GHCS subscales were examined for patterns of integrated (i.e., similarities) and differentiated (i.e., variability) culture within the organisations. Results Patterns of differentiated culture were found in six organisations for one or more GHCS subscales. Patterns of integrated culture were found in three organisations for one subscale. In two organisations, patterns of both integrated and differentiated culture were found. Conclusions The findings contribute to the conceptualisation of and research into organisational culture in group homes, with implications for changing and maintaining culture.
... A small number of qualitative studies has explored staffing practices in poorly performing community group homes. In Australia, Bigby et al. (2012) found a staff clique dominated the group home culture. They were opposed to national policies, to the values of the organisation, and to change overall, and many examples of 'othering' were found in their language and practice, suggesting an 'us and them' attitude towards people with intellectual disabilities (e.g. ...
... The culture of an organisation is expressed in multiple ways: in assumptions and attitudes of managers and staff (explicit or implicit); and in manager and staff practices. Similar to the structure of organisations, their culture is not created in a hierarchical process from power holders' values through staff attitudes and practices; rather, it most likely results from complex interactions of external and internal factors such as leadership commitment; power, structures and control systems; formal policies and processes; and informal stories, rituals and routines (Alvesson, 2002;Bigby et al., 2012;Johnson & Scholes, 2002). ...
... A valuable contribution to the literature for future researchers is a commitment to inclusive research practices that includes individuals with severe to profound intellectual and developmental disabilities: a commitment to "inclusive research" is a commitment to representing and engaging with the diversity of the population who live with intellectual and developmental disabilities in participatory and collaborative approaches. Along with Bigby, Knox, Beadle-Brown, Clement, and Mansell (2012), we acknowledge that including the direct voices of individuals with severe to profound intellectual and developmental disabilities is difficult given that their thoughts, feelings, and other mental states cannot be directly accessed. Nind and Kellet (2002) deliberately questioned how best to empower individuals with more severe impairments in research. ...
... Perhaps, as suggested above (drawing upon Nind and Vinha, 2012), a key may be in leaving room for a multiplicity of approaches to inclusive research that centres the value of the work for those most affected and an openness to employing innovative and adaptable methods. For example, Bigby et al. (2012) reported on a secondary analysis of the data from two studiesan ethnographic study (Hammersley & Atkinson, 2007) and an action research study (Hart & Bond, 1995). Of note, these studies (while beyond the temporal scope of the present review) described using observational methods as a means to capture group home residents' behaviours and responses to life in their group homes. ...
Article
The rights of people with intellectual and developmental disabilities to be included in research is increasingly being recognised. Given this, there is a need for further understanding of the extent to which inclusive research practices with self-advocates have been successful in creating meaningfully collaborative research teams. The following review examined how often descriptions of methods and practice have aligned in inclusive research with people with intellectual and developmental disabilities, using the categories of advisory, leading and controlling, and collaborative group. Did the description of the research process fit the type of inclusive approach intended? A sample of 53 studies was systematically selected. Findings indicated that 48 of the 53 studies described their research process in terms of the advisory (n = 3), leading and controlling (n = 4), or collaborative group category (n = 41) and matched their intention, while 5 of the 53 studies described a collaborative group approach but enacted an advisory group approach. While the majority of articles described their process as congruent with the intentions that they set out, improvement in inclusive research practices is still needed. The use of a collaborative approach dominated, and leadership and control by people with intellectual and developmental disabilities was rare. Future research should explore the potential for self-advocates to lead. Also, the majority of the studies tended to collaborate with individuals with mild to moderate intellectual and developmental disabilities. Future research should consider a commitment to including individuals with severe to profound intellectual and developmental disabilities.
... International studies that investigate the transition of aging people with intellectual disabilities are also limited (Egan et al. 2022). But we do know from international studies that staff are important people in the lives of group home residents (Bigby et al. 2012), and that staff is involved in the decision whether or not a person with intellectual disabilities relocates es to another care setting (Bigby et al. 2011). ...
... The Commission's stance towards group homes from the outset seemed tilted towards the negative. For example: the Chair commenced hearing 3 talking about the need to explore negative assertions about group homes as places conducive to violence, neglect, abuse, and exploitation; in much of the text stereotypical and disparaging labels were applied unquestionably to group homes; prominence was given to interpretations of the UNCRPD that cast group homes as inherently restrictive of human rights and in contravention of Article 19; and assertions about the institutional nature of group homes were not interrogated to test which of the 8 characteristics described by Kayess in her evidence (CoA, 2019, Exhibit 3-033) are found in Australian group homes, as there is certainly some research that suggests not all of these characteristics are found in all group homes, particularly the better ones (Bigby et al., 2012;Bigby & Beadle-Brown, 2016). ...
... Research findings about underperforming group homes include the powerful influence of certain staff on how things are done, poor leadership, task-oriented staff, staff seeing people with disability as different and less than themselves, incongruencies between staff practices and espoused organisational values and aims, service isolation and staff resisting others' ideas (Bigby et al., 2012;Clement & Bigby, 2010). ...
Article
While scholarship regarding the promises and challenges of deinstitutionalisation is expansive, less is known about deinstitutionalisation within the context of contemporary neoliberal disability policy frameworks. This article reports on a study exploring recent transitions from institutional to community living within the context of the highly contested National Disability Insurance Scheme (NDIS) in Australia. The perspectives of family members and staff within disability services reveal diverse understandings of the transition. Thematic analysis identified multiple complexities, including hope simultaneously experienced alongside grief and loss, and the non‐linear processes involved in taking on new roles and identities. The study demonstrates that deinstitutionalisation is not constituted merely by a physical re‐location and that undoing institutional practices requires ongoing attention and resources. Significant concerns raised by participants relating to the impacts of privatisation, fragmented services and a casualised workforce disrupt simplistic thinking about the inevitability of social inclusion through deinstitutionalisation, particularly within neoliberal policy settings.
... Even in poorer group homes the culture is more person centred and flexible than that found in institutions (Bigby et al., 2012). For example, rather than the shared dormitories of institutions, people in group homes generally have their own bedroom. ...
Chapter
Full-text available
Many people with intellectual disabilities live in poor-quality supported accommodation services where they spend a significant part of their day disengaged—doing nothing. It is clear that it is the quality of staff support rather than the number of staff that makes the difference and that all people with intellectual disabilities can be engaged for much of their day. Engagement in meaningful activities and social interactions is a fundamental prerequisite to a good quality of life. When staff consistently use a practice known as Active Support, people with intellectual disabilities have higher levels of engagement and a better quality of life. This chapter lays out the essential elements of Active Support and the frontline managerial practices and organisational features necessary to embed it in services. Finally, it considers the connections between Active Support and other person-centred practices, such as support planning, positive behaviour support, and supported decision making.
... Research over several years has provided evidence that community-based solutions have positive outcomes in terms of effectiveness compared to the support provided by institutions [55,56,57]. Several researchers also point out that costly improvements to the physical conditions of existing institutions (particularly 24hour institutions) or splitting/redesigning existing institutions into smaller units does not change the institutional culture and makes them more di cult to close in the long term [58,59]. In conclusion, the underlying assumption of the rights-based approach, in addition to the general decent quality of life, is to let persons with disabilities have the same life problems and challenges as the population without disabilities. ...
Preprint
Full-text available
Background The concept of subjective well-being (SWB) is frequently used in economic, social, and other research. It is extremely relevant to assess the well-being of vulnerable groups, e.g., persons with disabilities. The 2006 United Nations Convention on the Rights of Persons with Disabilities urges countries to introduce policies that ensure equal life opportunities for this group. The aim of this article is therefore to assess the impact of public policies in selected European countries on the life satisfaction of people with disabilities. Methods We use nationally representative data from five waves of the European Social Survey covering 25 countries and public policy data from the OECD database. Multivariate regression was applied to estimate the influence of public spending due to incapacity (on a country level) on the individual life satisfaction of persons with disabilities, controlling for country dummies, individual characteristics and other macroeconomic factors. Results The results show that the amount of public spending on disability as a percentage of GDP is statistically significantly associated with the life satisfaction of people with disabilities in European countries. The relative increase in expenditure on the country level increases the life satisfaction of people with disabilities. Among other macroeconomic factors, the HDI is also positively associated with life satisfaction, while the disability employment gap is negatively associated. Moreover, we proved that in more developed countries, the impact of incapacity spending on life satisfaction is smaller. Conclusions To our knowledge, this is the first study examining the influence of public policies on the individual well-being of persons with disabilities. Our results confirmed that the level of public expenditure targeting vulnerable groups has a clear and positive impact on the subjective well-being of individuals. These findings present important evidence that targeted policies can improve the lives of individuals.
... The ethnographic research focused on culture, and categorised the group homes as underperforming in terms of community inclusion, engagement, choice, and control. It found that the culture in these homes was similar to that of the institution, albeit less harsh and extreme (Bigby, Knox et al., 2012). Nevertheless, in 2008, former Kew Cottages residents in these group homes experienced: rigid routines that were staff centred and inflexible around getting up, meals, going out during the day. ...
... The cultural domains framework developed by Bigby et al. (2012) provide clarity to what organisational culture is within support services, though its primary focus is the roles of support workers. ...
Article
Full-text available
Background Service culture refers to the practices, views and values within service organisations. Developing positive cultures has been thought imperative to improving social care, though day services and their cultures remain an under‐researched area. For many autistic people with profound learning disabilities, day services are the sites at which they orientate their Monday–Friday adult lives and so service cultures are fundamental to the way they experience adulthood. It was thus the purpose of this study to explore day service culture through the perspectives and experiences of this group. Methods This study took a phenomenological approach involving extended participatory observations with an autistic person with profound learning disabilities at their day service, as well as broader ethnographic work within this context. Data was analysed through theory‐led thematic analysis. Findings The study found that autistic people with profound learning disabilities contribute their customs and values to service culture in everyday life and that space, time and place were important in this endeavour. It highlighted how these customs and values could be adopted or challenged by the service, its staff and their established culture. Conclusion It is argued that positive service cultures are ones in which day services acknowledge and respond to the views and values of autistic people with profound learning disabilities. A potential framework is discussed to support services with this aim.
... The semi-institutional nature of group homes also forces residents to keep living with their former partners after breaking up with them. 2. Organizational culture and practices: Various studies (e.g., Bigby et al., 2012;Walker, 2012) have highlighted the crucial, unique role of group homes' formal and informal culture in determining the quality of services these settings provide, as well their support in meeting residents' sexual needs (Charitou et al., 2021). Particularly important in our case is the risk-averse culture that all too often informs the conduct of professionals working with people with intellectual disabilities. ...
Article
Full-text available
Introduction Despite recent progressive changes in policy, practices, and discourse, when it comes to intimacy and sexuality, the rights of individuals with intellectual disabilities remain unrealized. Drawing on interviews with Israeli social workers employed in residential settings, the study seeks to better understand mechanisms and factors behind this reality. Methods Semi-structured interviews were conducted with fifteen Israeli licensed social workers employed in small and large group homes. All interviews were transcribed and analyzed thematically. Results Using a temporal perspective, the identified themes are organized according to common, potential relationship stages: (a) forming a relationship; (b) practicalities of relationships: private and shared time; (c) dealing with relationship conflicts; (d) cohabitation; and (e) breakup. We trace the barriers experienced in each stage as well as the way social workers perceive both these barriers and their own role in overcoming them. Conclusions We suggest four root causes that underlie the intimacy-challenged life of people with intellectual disabilities in residential settings: (a) the institutional nature of residential services; (b) organizational culture and practices; (c) limited resources; and (d) the human factor. Policy Implications The current study suggests that to support individuals with intellectual disabilities in realizing their intimate citizenship, multilayered policy efforts are needed, requiring changes in the four root causes.
... Thus, even individuals who favour change might resist it because change challenges the existing norms of behaviour in their organisation (Schwartz and Davis, 1981). On these grounds, it can be understood why in learning disability services, individuals submit to the cliques of staff managing the group norms (Bigby et al., 2012). ...
Article
Purpose This paper aims to focus on why some practitioners in learning disability services resist implementing evidence-based approaches, such as positive behaviour support, despite its benefits. Design/methodology/approach Status quo bias theory was used to explain why practitioners choose existing practices over evidence-based approaches despite the negative consequences to their well-being. Findings Staff members’ decision to maintain the status quo should not be based solely on a cost–benefit analysis, as is commonly believed, as several factors influence it. Originality/value This lies on the development of leadership action based on the factors that influence staff's decision making in favour of the status quo.
... Often person-centred is contrasted, as in the Royal College of Nursing Definition, with staff-or service-centred and this has become one of the dimensions of service culture described by Bigby et al. (2012;Bigby 2016 ...
Book
Social services for people with disabilities have undergone substantial changes over time, in particular in the past two decades. Whilst lack of affordable and appropriate housing is a barrier to community living for many people with disabilities, it is only one part of the jigsaw. This book traces some of these changes, in particular related to living situation and support available, in a range of different countries and considers the factors that have influenced these changes. This book considers other aspects of what is needed to bring about real change in the lives of all people with disabilities.
... A series of qualitative investigations based in community residential settings for people with intellectual disabilities in Australia, has led to the development of a cultural framework (Bigby et al., 2012). Group homes which rated highly on quality of life outcomes for service users were characterised by close alignment of values between staff and senior managers; positive regard for service users; a perceived purpose of empowering service users; person-centred working practices and; an embracing attitude to new ideas and working with external stakeholders. ...
Article
Purpose Research into culture within intellectual disability services, has predominantly focussed on small group homes in Australia. The current investigation aimed to explore the transferability of the dimensions of culture identified in the literature, to a residential Intellectual Disability service in the UK. The purpose of this study was to better understand the impact of informal culture upon the behaviour of direct care staff, particularly around managing behaviour that challenges. Design/methodology/approach Semi-structured interviews were conducted with direct care staff. Interview transcripts were analysed thematically using template analysis. Findings Themes regarding leadership, perceptions of managers, team functioning, and relationships between direct care staff and service users, were identified, corroborating the existing literature. Additional themes relating to being aware of the risks posed by service users, and the emotional impact of behaviour that challenges, also emerged. Originality/value To the best of the authors’ knowledge, this is the first qualitative study to explore informal culture within a community residential Intellectual Disability service in the UK.
... Rigidity around routines and navigating caregiver surveillance and control is not unique to being diagnosed with dementia, but a documented phenomenon in the lives of people with intellectual disabilities in group home and institutional environments (Bigby et al., 2012;Johnson & Bagatell, 2018). These experiences and the ways they have shaped behaviour may have been part of daily life for many years. ...
Article
Accessible Summary • This project focuses on people with intellectual disabilities and dementia that live in group homes or care facilities in the United States. • People in this project shared how their life changed as they got older. They talked about where they live, what they do for work and how they get to spend their day. • All the people in this project talked about how it was important for them to see their friends, even if where they lived or worked changed. • People in this project worried that they would have to move or stop doing activities that were important to them if they started to need more help. • People with intellectual disabilities and dementia should receive support to continue to see friends and do their favourite activities as they get older. Abstract 1 Background For people with intellectual disabilities and dementia, transitions are likely to become increasingly common as they age. While transitions experienced by people with intellectual disabilities in young adulthood are frequently studied, less is known about transitions in older adults, including residential, vocational and leisure changes. This article aims to explore the experiences of transition from the perspectives of people with intellectual disabilities and dementia, including the impact on their daily lives. 2 Methodology Three women with intellectual disabilities and dementia living in residential settings participated in participant observations and informal interviews across a variety of environments and activities. Field notes and interview transcripts underwent a thematic analysis focusing on transitions. 3 Findings Participants experienced the impact of transitions in their residential placements, day programming, leisure activities and relationships. Themes related to their experiences of transitions included making sense of transitions, utilising peer care networks for support and tackling the looming threat of loss and transition. 4 Conclusions Peer care networks and friendships are crucial in supporting people during and after transitions. Receiving effective supports to maintain relationships, roles and activities, even in seemingly minor ways, is an important right for people with intellectual disabilities and dementia, particularly as care needs increase.
... Le développement de compétences, la socialisation et la découverte de soi peuvent y être laissés de côté, que ce soit à cause d'un manque de personnel, de formation ou de moyens (Mansell et al., 2008;Van Der Putten et Vlaskamp, 2011). Ainsi, de façon générale, dans les services pour les personnes ayant une incapacité sévère, il est constaté que le personnel considère que les usagers ont un handicap trop important pour participer de façon significative (Bigby et al., 2012), malgré que la croyance aux capacités de ceux-ci soit un facteur contribuant à la qualité du soutien . De surcroît, les accompagnateurs tendent à croire aux principes de l'autodétermination et de l'inclusion, mais considérer que ceux-ci ne sont pas applicables aux personnes ayant les incapacités les plus sévères ) et à avoir une compréhension erronée du concept de participation sociale ). ...
... It is surprising to find out that there are almost no differences in the participation and living in the community indicators between those who are living at a residential facility and those who live in a supervised apartment (group home) in their community, regardless of the person's support needs. The reason for this could be that independent living services such as group homes often differ from nursing homes in size or location, but still keep some of facilities' characteristics [54], such as rigid routines, social distance or depersonalization [80]. As noted by certain authors [81,82] the type of home might be not as important as the type of support provided, which should be focused on the person and encourage participation. ...
Article
Full-text available
People with intellectual disability (ID) and extensive support needs experience poorer quality of life than their peers whose disability is not as severe. Many of them live in residential settings that limit community participation and prevent them from exercising control over their lives. This work analyzes the extent to which professional practices are aimed at promoting the right to community living for people with ID and extensive support needs, as well as the rights that are particularly linked to it, such as the right to habilitation and rehabilitation and the right to privacy. A specific questionnaire was designed and administered to 729 adults with intellectual disability (M = 37.05; DT = 12.79) living in different settings (family home, residential facilities and group homes). Measurement and structural models were estimated using exploratory structural equation modeling. Results obtained reveal that people with extensive support needs receive less support in terms of guaranteeing their right to independent living and privacy, especially when they live in disability-related services. This study highlights the need to implement and monitor, using valid and reliable indicators, mesosystem strategies that guarantee the right to live and participate in the community, especially for individuals with ID and extensive support needs.
... There are usually ordinary or purpose-built group homes, that could either be dispersed or clustered, and potentially with supported living ). The outcomes in these housing solutions are, however, influenced by the support provided within these settings with Bigby, Knox, Beadle-Brown, Clement, and Mansell (2012) finding support staff engage in practices resembling those of institutions, such as centring work practices on staff rather than residents. This is, in part because a significant proportion of housing for disabled people, and indeed other marginalised and/or vulnerable groups such as homeless people, those with mental health needs or managing drug or alcohol addiction in the UK is provided by charitable organisations as part of their supported housing offer. ...
Article
Full-text available
In recent years there has been an ideological push within social care away from segregated housing provision towards supported housing integrated within the wider community (McConkey, Keogh, Bunting, Iriarte, & Watson, 2016; Merrells, Buchanan, & Waters, 2019; Overmars-Marx, Thomése, Verdonschot, & Meininger, 2014). Despite this, many housing solutions for older and disabled people continue to be built on a designated basis, with physical and emotional wellbeing outcomes being both contested and mixed. After reviewing key policy relating to social care housing alongside some of the theoretical and ideological positions, this article explores the social and emotional outcomes of a diverse group of disabled people living with mental health difficulties, physical and intellectual impairments, illnesses and age-related conditions, who moved into a small, purpose-built estate of smart homes. Drawing primarily on qualitative data collected from tenants prior to moving and again seven months following relocation, the impact of moving into the estate on tenants’ sense of wellbeing and feelings of inclusion will be analysed and discussed in relation to efforts to build a new community.
... Related to the research on Active Support but adopting a different lens, Australian research has identified five dimensions of culture as common to all supported accommodation services using rigorous observational methods. Summarised in Figure 2 this work describes the positive and negative end of each of the dimensions, which are in turn associated with poor and better quality services Bigby et al., 2012;Bigby et al., 2015;Bigby & Beadle-Brown, 2016b). ...
Technical Report
Full-text available
The research aims to map this broad literature on the abuse of people with intellectual disabilities and identify: 1) personal, environmental and relational aspects, as well as factors in service environments and organisational cultures associated with the vulnerability of people with intellectual disabilities to violence and abuse; 2) preventative abuse strategies for people with intellectual disabilities, and, 3) review the evidence about the quality and effectiveness of these strategies.Report for the Disability Services Commissioner. Living with Disability Research Centre, La Trobe University
... Responses to statements were gathered on a 5-point scale from, strongly agree to strongly disagree. (Bigby, Knox, Beadle-Brown, Clement, & Mansell, 2012;Shrogen et al., 2015). This is particularly salient in view of recent national scandals that have occurred in intellectual disability services in the UK (see below and Panorama, British Broadcasting Corporation, 2019). ...
Article
Very little is known of the activities of the most senior managers in organisations providing social care in the community to people with intellectual disabilities. Yet the importance of the focus and activities of senior managers in directing and supporting staff practice and staff experiences is likely to be central to an organisation's functioning and support provided for staff and service users. This study employed Delphi methodology with a panel of 11 senior managers, mostly chief executives, managing small to very large organisations providing support for people with intellectual disabilities, in the UK. Answering three rounds of questions, senior managers described their face‐to‐face and non‐face‐to‐face contacts with staff and decision‐making. Narrative data were subject to quantitative and thematic analysis. In the last round, themes were subject to quantitative analysis. Most contacts between senior managers and staff were in formal structured contexts and all managers used social media to promote the organisations' ambitions regarding good practice. The panel focused upon accessing and understanding the informal aspects of their organisations and staff factors. Decisions were both short‐term reactive and long‐term strategic and an effort to link these was felt to improve organisational functioning. A framework for understanding senior managers' activities emerged showing two sources of demands and opportunity, extra‐organisational focused upon meeting legal and regulatory demands and intra‐organisational focused upon understanding and influencing informal staff practices/experiences and cultures within their organisations.
... Moreover, research indicates that staff members' attitudes toward the capability of adults with PI(M)D affect everyday life participation ( Bigby et al., 2012Bigby et al., , 2015. In addition, low quality of support leads to social isolation and disengagement among adults with PI(M)D (Beadle-Brown et al., 2016). ...
Article
Participation is the goal of Swedish disability policy, but it is difficult to achieve for adults with profound intellectual (and multiple) disabilities (PI(M)D). Since these adults are dependent on others in every aspect of their lives, others control their ability to participate in everyday life decisions. This study used observations, analyzed with Shier’s ladder of participation, to elucidate and describe participation in daily life for adults with PI(M)D living in a group home. The results showed that the adults often reached the first three levels of Shier’s ladder, one adult reached the fourth level once, and no one reached the fifth level. Participation on a higher level, therefore, seems hard to reach for adults. Staff members’ attitudes toward the adults’ capability can also be a barrier to participation. Applying Shier’s ladder of participation can provide valuable information that might lead to increased participation in daily life for adults with PI(M)D.
... Research suggests a link between staff who hold negative values, beliefs and attitudes toward people with disabilities and their likelihood of committing acts of abuse, neglect and exploitation (Marsland, Oakes, & White, 2007). In particular, staff who believe that people with disabilities are "not like them" are likely to deliver poor quality support (Bigby, Knox, Beadle Brown, Clement, & Mansell, 2012). Observing staff practice and actively collecting feedback from people with disabilities about the way staff support them, could help services to identify undesirable staff behaviors and attitudes that lead to poor support, abuse or neglect. ...
Article
Systems that measure service quality in disability organizations commonly review service delivery processes, rather than quality of life outcomes for service users. Disadvantages of measuring processes rather than outcomes are that funders and regulators may fail to identify poor quality support until major crises occur. One solution has been the development of quality systems that combine measuring processes and the personal outcomes of service users, though the efficacy of such systems has not been explored. The aim of this article was to identify quality systems that combine measurement of processes and personal outcomes, and explore the advantages and limitations of these to inform future development of quality assurance systems. The study used an internationally accepted eight domain quality of life framework and a qualitative content analysis to map and evaluate the characteristics of three combined quality systems currently used in the disability sector; the Care Quality Commission framework for community adult social care services, the adult social care outcomes framework and personal outcome measures. The three systems were unbalanced, focusing more on procedure than personal outcomes. None of the systems measured personal outcomes comprehensively against all eight quality of life domains and the rigor applied to such measurement varied markedly. Combined systems have potential to compensate for limitations of systems that measure either processes or outcomes, but could be improved by a greater focus on measuring service user outcomes, including all quality of life domains and use of mixed methods such as interviews and observation of the support people receive.
... People-first language focuses on people whom staff support in contrast to focusing on their ASD or particular behavioral characteristics (Bigby and Beadle-Brown 2016). It is likewise recommended that staff speak to and about adults with ASD in a manner respectful of their adult status in contrast to how people usually interact with and refer to children (Bigby et al. 2012). It is further recommended that staff refrain from speaking to each other about people with ASD when the latter are present but are not included in the interaction (Reid et al. 2018). ...
Article
Full-text available
Many adults with autism spectrum disorder (ASD) receive support from staff within human service agencies. Those staff, and especially personnel in direct service roles, usually require training to ensure they have the skills to provide desired support in a quality manner. Staff training is particularly important in regard to adults with severe symptoms of ASD who require more staff support than individuals with less significant ASD challenges. This paper describes training of front-line, human service staff in key performance skills for providing quality support for adults with severe symptoms of ASD. A summary of performance- and competency-based behavioral skills training is initially provided as a means of ensuring staff acquire skills to fulfill job expectations. A description of skills that warrant training based on behavior analytic research involving adults with severe ASD symptoms is then presented. The targeted skills focus on how to provide meaningful day activities tailored for adults with severe symptoms of ASD, teach in a naturalistic manner in light of common staffing characteristics of adult service settings, promote daily happiness, provide beneficial social attention, and treat adults with ASD in general with dignity. The important yet qualified role of staff training in the overall provision of quality support is also emphasized.
... Levels of engagement are positively associated with the provision of staff physical, non-verbal or verbal assistance (Felce, Lowe, & Jones, 2002a;Jones et al., 1999). DSP interactions are influenced by service expectations, DSP values, motivation, and competence, and individual characteristics of the people they support (Bigby et al., 2012;Felce et al., 2002b). For example, staff spent less time interacting with individuals with more severe disability and greater challenging behavior (Felce & Perry, 1995). ...
Article
Full-text available
Two non-U.S. quasi-experimental studies reported Active Support training was associatedwith increased engagement in individuals with IDD, but no randomized controlled trials(RCTs) exist. We evaluated effects of Active Support training on staff assistance, and socialand 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 nonsocialactivities. Younger individuals with more skills living in homes with fewer staff changes weremore socially engaged. Factors associated with nonsocial engagement mirrored thosereported in Qian, Ticha ́, Larson, Stancliffe, & Wuorio, (2015). Staffing-related implemen-tation challenges and statistical power limited our ability to detect differences
Article
Person-centered planning has been shown to benefit people with disabilities and their quality of life. However, we have little knowledge of how person-centered planning can benefit staff and administration within a group home organization, as well as the extent to which it results in changes to organizational practices and procedures, as well as perceptions of people with disabilities. In this qualitative study, we explored the perspectives of organizational employees, an affiliating behavioral consultant, and residents with intellectual and developmental disabilities, taking into consideration key insights from person-centered planning consultant-coaches, to understand the effects of a person-centered planning initiative on the group home organization. Accompanying our findings are five stories that poetically describe each of the participating residents and their experiences with organizational employees throughout the implementation of the initiative. Implications for research and practice are discussed.
Article
The 2014 Centers for Medicare and Medicaid Services “Settings Rule,” which took effect in 2023, restricts Home and Community Based Services funding for adults with intellectual disabilities to small integrated settings and person-centered supports. The Settings Rule responds to the fact that community services, mandated by the Americans with Disabilities Act (ADA) and the Supreme Court Olmstead ruling, while integrated physically, often operate as institutions. The Settings Rule is meant to create integration and individualization. I argue that the regulation cannot, on its own, accomplish these goals. The deinstitutionalization movement has had mixed outcomes—and without change across multiple socio-ecological systems, the Settings Rule will also deliver mixed results.
Article
Background Shared housing for adults with intellectual disabilities with staff support, is a common housing model internationally. We explored an overlooked aspect of group homes, namely the extent to which they enable a sense of ‘feeling at home’ for residents. Method A diverse group of 19 housemates participated in a photovoice study. Participants took photos in their homes and discussed them in individual interviews and in groups. Data was analysed using reflexive thematic analysis. Results Residents' experience of home was multi‐dimensional. ‘Feeling at home’ related to home as a site of identity cultivation (personal home); physical comfort or ‘misfitting’ (physical home) and home as the locus of key relationships (social home). Conclusion Achieving a sense of ‘feeling at home’ requires engagement in practices of home‐making. Many of our participants required support from staff to engage in these practices. For some housemates their experience of home was conditional and precarious.
Article
Purpose Institutional abuse is a worldwide phenomenon with the UK also subject to several high-profile abuse scandals perpetuated on people with learning disabilities and/or mental health conditions living within institutional settings. This study aims to provide a broad perspective of safeguarding practices within institutional care to inform practice and service development in this area. Design/methodology/approach A narrative overview was undertaken of a range of empirical evidence, discussion papers, enquiry reports, reports from regulatory bodies and professional guidance to explore safeguarding practices within institutional care for individuals with learning disabilities and/or mental health conditions. Findings A range of literature was identified that exposed and explored abuse in this context. Three key themes were identified: failings within institutional care; safeguarding issues and concerns; and good practice within institutional care. Whilst guidance is available, standards are explicit and protocols facilitate improvement potential in this area, a consistent message was that statutory recommendations for reform have not been effective. Originality/value This paper provides an important resource for practitioners and service providers involved in institutional care. An accessible overview of both the empirical evidence and grey literature on adult safeguarding within institutional settings is provided, along with a range of standards and resources that specify practice in these settings.
Article
Background The strength of practice leadership predicts the quality of Active Support but it can be compromised by other demands on frontline managers. The study aimed to identify and understand differences in practice leadership over time and between organisations. Method Data collected in 2022 in 96 services from 11 organisations using the Observed Measure of Practice Leadership were compared to similar data from 2013 and 2018. Qualitative fieldnotes were analysed thematically. Findings Practice leadership scores increased significantly between 2013 and 2018 but declined significantly between 2018 and 2022. Scores were significantly higher in organisations that had implemented Active Support since 2013 compared to later adopters. Higher scoring organisations had structures that supported frontline managers with practice leadership and that countered increasing administrative demands. Conclusions Establishment of support structures for practice leadership by organisations warrants further investigation together with the relative importance of each task of practice leadership.
Chapter
Full-text available
Culture refers to shared beliefs, values, basic assumptions, norms, and patterns of behaviour that influence how staff think, feel, and act. It exists at multiple levels within organisations (e.g., whole of organisation, senior managers, frontline service) and it enables and constrains what staff do. Most research on culture in disability organisations has occurred at the service level. Culture can account for poor practice and abuse of people with intellectual disabilities living in supported accommodation services. Conversely, it can contribute to good quality support and quality of life outcomes. This chapter explains what is culture, how it influences staff behaviour, the characteristics of culture in good and poor quality services, and how to change culture.
Article
The concept of quality of life, teacher enthusiasm, and organizational climate of school for teachers has received the attention of researchers and practitioners since their origin and is connected to a variety of outcomes, which influence the school's overall performancehool as an organization. The present investigation planned to give a comprehensive overview of previous research. The study highlights the significance, influential aspects, research stream and themes. The study contains 110 journal publications from 1984 to 2021 related to the field. Biblioshiny has been used to conduct and visualize bibliometric analysis in the present study. The study highlighted key aspects of organizational climate, quality of life, and teachers' enthusiasm literature in education. The study found that the “Journal of applied research in intellectual disabilities” is the most useful. The word quality of life appears the most frequently in keyword plus; the leading country based on collaborations with other countries is the United Kingdom. The researchers utilized a conceptual framework to uncover hidden research streams and themes in the literature on quality of life, teacher enthusiasm, and organizational climate. Using a co-occurrence network, three research streams were discovered. Finally, a thematic map was utilized to offer a complete picture by classifying important themes as basic or transversal, emerging or declining, motor, fully developed, yet isolated. These themes have suggested future directions and major research areas
Article
A policy norm enshrined in the United Nations Convention on the Rights of Persons with Disabilities 2006 reflected in Australia's National Disability Insurance Scheme is for people with psychosocial and other disabilities to have choice and control over their lives and not to live in institutional settings. In Australia, private congregate care settings remain in most states and territories, yet are not recognised as institutional settings in policy or academic literature. This recognition is long overdue and is the focus of this article. The article reports on findings from an ethnographic study in a type of private congregate care setting in Victoria—supported residential services (SRS). Adopting criteria adopted by Davies (1989) from Goffman's notion of “total institution,” observations and interviews with 12 residents with psychosocial disability are analysed. These settings are found to meet many of the criteria for total institution. This finding has two critical implications for policy and practice. First, the extent to which institutionalisation in SRS impacts on the choices residents are able to make. Second, the extent to which independent support and advocacy are needed to ensure residents can exercise choice and control over their lives to find pathways out of SRS.
Chapter
Trends in the provision of accommodation and support for people with intellectual disabilities have primarily taken the form of deinstitutionalisation, the development of community living and the individualisation and personalisation of funding and support. The UN Convention on the Rights of Persons with Disability Article 19 conveys the right to a home in the community, with choice over where and with whom to live and support to participate fully in society. Although the data available to judge whether community living is a reality for people with intellectual disabilities are limited, what does exist indicates that there has been little change over time and those with intellectual disability still tend to live in, often congregate, residential care settings. This chapter presents an overview of the definition and development of community living, the outcomes of deinstitutionalisation and the factors that impact outcomes, drawing on the finding that an ordinary home dispersed in the community is a necessary but not sufficient condition for better quality of life outcomes.KeywordsResidential careCommunity livingDeinstitutionalisationService qualityHuman rights
Article
Full-text available
Positive developments in inclusion in line with ‘Nothing about us without us’ have rarely extended to people with profound intellectual disabilities. Advances in inclusive research are in danger of leaving this group (and their families and allies) on the outside, with researchers relying on proxies at best, or more often omitting this group as ‘too difficult’ to include in the research process at all. This paper argues that finding a way for people with profound intellectual disabilities to belong in inclusive research is important. Using examples, small stories and photographs, it explores and illustrates potential ways to research with and alongside those with profound intellectual disabilities that celebrate different kinds of agency and personhood and that support relational autonomy. The paper concludes that rather than starting from how inclusive research is currently conceived, the starting point should be a deep knowledge of people with profound intellectual and multiple disabilities. The way forward is likely to be an inclusive research culture that can accommodate ‘being with’ as core to its research approach. This will enable the voices of people with profound intellectual disabilities to inform the research in creating intersubjective knowledge together.
Article
Full-text available
Deinstitutionalisation has increased the likelihood of adults with intellectual disabilities residing in neighbourhoods either in staff supported accommodation or in their family home. However, it raises the question of whether national policies on disability have translated into practice actions by service providers that result in positive social inclusion outcomes for individuals. This study examined the practice initiatives supporting social inclusion in neighbourhoods in specialist state-funded service providers for adults with intellectual disabilities. Using a mixed methods design, CEOs/service leaders of 40 organisations completed an online survey. Follow-up interviews were completed with a randomised sample. Shifting towards new service models and strategic links with mainstream organisations were most often mentioned as furthering social inclusion goals. A wide range of service initiatives were reported, with positive outcomes alongside a range of challenges. Service providers play an important role in providing individualised supports that foster local engagement. However, the service context is complex and service leaders have reported many challenges that may impede progress on social inclusion.
Article
Purpose The purpose of this paper is to provide a commentary on Banks et al. , and sets the wider context. Design/methodology/approach It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people’s experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised.
Article
Choice and control are pivotal in UK Government policy for achieving personalisation of social care for people with learning disabilities; however, little is known about the role care management plays in supporting people with learning disabilities finding social care services. This article explores that the support care managers provide people with learning disabilities, how care managers source and use information to offer choice in relation to accommodation and support, with a focus on people receiving managed budgets. Qualitative interviews with eight care managers from two local authorities in the South East of England were analysed using thematic network analysis, producing three global themes. The first ‘shaping choice’ describes the role of the care management process and assessments have in determining opportunities for choice. The gathering and interpretation of quality information is explored in the second global theme, highlighting the role of visiting settings to understand their quality. ‘Choice in principle’ is the third global theme, whereby the factors shaping choice come to be seen as choice akin to that anyone else has. These findings have implications for future policy and practice in relation to care management for people with learning disabilities.
Article
Positive Behavior Supports for Adults with Disabilities in Employment, Community, and Residential Settings by Keith Storey and Michal Post (2019) presents valuable information for support providers and clinicians working with adults in inclusive settings who display challenging behavior. Numerous examples of challenging behavior encountered in such settings are provided along with a multitude of interventions for addressing the behavior in ways that comport with the values of positive behavior support (PBS). This review highlights contributions of the Storey and Post book and considers the content in regard to the controversial relationship between PBS and applied behavior analysis (ABA). The authors specify ABA as the foundation of PBS, but questions linger about the exact PBS–ABA relationship that will likely affect the book's ultimate contribution. Concern over the relationship is illustrated in regard to qualifications of behavioral professionals whom the authors often refer to as being necessary to help support providers develop and implement PBS interventions.
Article
Purpose The purpose of this paper is to reflect on the difficulties highlighted by Ntinas around supporting change in services for people with intellectual and developmental disabilities. Design/methodology/approach This commentary examines what is needed for change and reflects on staff culture. Findings The authors propose that it is not sensible to separate the culture of a service from the implementation of person-centred approaches and attempt to map how the concepts overlap and are interconnected. Originality/value Whilst some elements of culture are clearly important in order to start the process of change, other elements will change as an intervention is introduced and embedded.
Article
Full-text available
The purpose of this article is to identify the general methodologic and data set-specific challenges that must be overcome when attempting a secondary analysis of qualitative data. Two separate examples of secondary analyses of qualitative data sets are also described, including one unsuccessful beginning.
Article
Full-text available
Background In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her ‘best interests’. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live ‘a life like ours’. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of ‘good’ care.
Article
Full-text available
Organizational culture has been shown by organizational psychology to influence important aspects of staff behaviour. In particular, mismatches between staff perceptions of real and ideal organizational cultures have been shown to be associated with a range of negative outcomes for staff, such as stress, sickness and staff turnover. The present study investigates organizational culture in services for people with intellectual disabilities. The aim was to discover the prevalent organizational cultures in these services, and associations between organizational culture and staff outcomes. As part of a large-scale survey of staff in services for people with intellectual disabilities, information concerning organizational culture and staff outcomes was collected from 450 staff. A self-report measure of real and ideal organizational culture produced nine dimensions of organizational culture: (I) tolerant/staff-oriented; (2) achievement-oriented; (3) innovative; (4) analytical; (5) social relationships; (6) rewarding staff; (7) stable work environment; (8) demanding; and (9) conflict management. These nine dimensions of organizational culture showed generally adequate psychometric properties. While there was some variation in organizational culture across services, there is little variation across staff with different job titles. Overall, the staff rated real organizational cultures to be relatively high in achievement orientation and fostering social relationships, and relatively low in managing conflict and providing rewards for staff. Staff rated ideal organizational cultures to be high in rewarding staff, being tolerant/staff-oriented and fostering social relationships, and low in demands on staff. Except for the dimension of making demands on staff, where staff rated organizations as considerably higher than ideal, staff generally rated organizations as being less than ideal on all dimensions of organizational culture. Organizational psychology theory predicts that poor 'person-organization fit' (i.e. a greater mismatch between real and ideal organizational culture) will be associated with a range of negative staff outcomes. This theory was largely supported by findings of the present study. The implications for practice and for future research are discussed.
Article
Full-text available
The costs, nature, and benefits of residential supports were examined for 86 adults with mental retardation living in village communities, 133 adults living in newly built residential campuses, and 281 adults living in dispersed housing schemes (small community-based group homes and supported living). Results indicated that (a) the adjusted comprehensive costs of provision in dispersed housing schemes were 15% higher than in residential campuses and 20% higher than in village communities; (b) dispersed housing schemes and village communities offered a significantly greater quality of care than did residential campuses; and (c) there appeared to be distinct patterns of quality of life benefits associated with dispersed housing schemes and village communities, with both approaches offering a greater quality of life than did residential campuses.
Book
Group homes emerged in the United States in the 1970s as a solution to the failure of the large institutions that, for more than a century, segregated and abused people with intellectual and developmental disabilities. Yet community services have not, for the most part, delivered on the promises of rights, self-determination, and integration made more than thirty years ago, and critics predominantly portray group homes simply as settings of social control. This book presents an ethnography of a New York City group home based on more than a year of field research. The text shows how the group home needs the knowledgeable and voluntary participation of residents and counselors alike. The group home is an actual workplace for counselors, but for residents group home work involves working on themselves to become more autonomous. The book reveals that rather than being seen as the antithesis of freedom, the group home must be understood as representing the fundamental dilemmas between authority and the individual in contemporary liberal societies. No longer inmates but citizens, these people who are presumed—rightly or wrongly—to lack the capacity for freedom to actually govern themselves. The text demonstrates that the group home depends on the very capacities for independence and individuality it cultivates in the residents. At the same time, it addresses the complex relationship between services and social control in the history of intellectual and developmental disabilities, interrogating broader social service policies and the role of clinical practice in the community.
Chapter
The rapid growth of staffed housing as a replacement for institutional care in hospitals and hostels has offered many people with severe learning disabilities a better life in the community: nearer to family members, in better accommodation, with more staff and more individualized care. But the opportunities created by the staffed housing model are often only beginning to be realized. Some people, especially those with challenging behaviour, have exchanged long hours of boredom and isolation in hospital for more of the same in the community.
Book
The landmark International Handbook of Applied Research in Intellectual Disabilities presents, explains, and illustrates key methods of research and evaluation of proven relevance and value to the field of intellectual disabilities. It features sections on the concepts and theoretical models underlying research and evaluation, the methods and techniques themselves, and the key application areas where the methods are demonstrated in action. Coverage includes applications in educational, social, family, health, and employment aspects of care and provision for those with intellectual disabilities.
Article
This study examines the relationship among space, identity, and storytelling in a group home for men with mental retardation. Using participant observation, interviews, and analysis of relevant documents, the author explains how residents use a particular type of narrative performance—"localized tellings"—to create “locales” within which they resist the constraining factors in the group home and to reassert their agency and individual identities.
Article
Background: In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice. Methods: An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence. Results: Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence. Conclusions: There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice.
Article
This article examines caretakers' definitions of residents at public institutions for the mentally retarded. The attendants at these institutions are officially responsible for the daily care of residents, maintenance of wards or living units and, increasingly, the provision of "therapeutic activities" and programming. Attendants often have been the target of institutional reform efforts. New policies prohibiting abuse of residents have been written; new mandates to provide programming have been handed down; new staff training programs have been implemented. Yet, at the institutions in this study, these reform efforts have not resulted in significant changes in attendants' definitions of residents.
Article
In this 2002 manual (10th edition), the American Association on Mental Retardation (AAMR), through its Ad Hoc Committee on Terminology and Classification, continues its contribution of information on the definition and classification of the state of functioning currently known as mental retardation. With this work, the AAMR attempts to state, describe, organize, and extend the thinking in the field of mental retardation that has occurred over the past 10 years since the publication of the AAMR's 1992 manual. The present manual contains and describes the logical continuation in conceptualizing mental retardation as functional and contextual. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
This article presents the findings of a review of evidence related to quality of life in models of supported accommodation for adults with intellectual disabilities identified in English-speaking nation deinstitutionalization and postdeinstitutionalization studies. An international literature-based investigation of research published between 1995 and 2005 in English-language peer-reviewed academic journals was conducted to: (1) review the outcome of deinstitutionalization and postinstitutionalization studies; (2) examine instruments used to measure outcomes for individuals; and (3) compare costs and benefits associated with different models of supported accommodation. In the deinstitutionalization studies, there was consistent evidence of greater choice and self-determination, participation in social networks or relationships and community-based activities, and personal satisfaction in community-based settings. Postdeinstitutionalization studies provided consistent evidence for greater choice, self-determination, and participation in community-based activities in smaller settings, but no evidence for greater physical health or material well-being, and little evidence for a relationship between type of setting and employment. Future research is needed to meet methodological challenges identified here, to investigate the apparent failure of smaller residences to improve residents’ well-being and to study systematically factors not directly addressed in the studies under review: poverty and income, organizational culture, and geographical variation.
Article
Background Typically people with intellectual disability have small, highly restricted social networks characterized by interactions with other people with intellectual disabilities, family members, and paid workers. The goal of ‘inclusion’ has been central to policies that have shaped services over the past 30 years. It is an ill defined concept with disagreement about its meaning, the problems it seeks to overcome and how it should be realized. Method Ethnographic and action research methods were used to support and collect data on the implementation of a programme, known as the Community Inclusion Framework, in a group home for five adults with severe intellectual disabilities in Victoria, Australia. Results and Conclusions A pattern of service delivery based on community presence rather than participation evolved and endured over 16 months. The findings show that most staff attached a different meaning to inclusion from that proposed in the Community Inclusion Framework, disagreed with the proposed meaning or felt these residents were too different for it to be meaningful. This suggests that priority will only be accorded to activities that lead to inclusion if staff are convinced of the veracity of this and given strong and consistent direction and support.
Chapter
IntroductionDescribing and Measuring the Characteristics of Residential Support ServicesPersonal Characteristics and Comparisons Among Models of Residential SupportOutcomes of Residential ServicesConclusions References
Article
Background Variation in staff performance between small community housing services indicates the need for research on the factors which predict high-quality care. Methods The associations between service sector, staffing levels, staff characteristics, internal organization or working practices, non-institutional milieu, and staff activity and the nature and extent of staff attention to residents were explored in a study of 10 statutory, 10 voluntary and nine private sector community housing schemes. Results There were few significant differences between sectors after differences in resident abilities were taken into account. Higher staff to resident ratios predicted greater resident receipt of attention and assistance but also a lower proportion of time during which each member of staff was directly concerned with residents. A greater range in resident ability predicted lower resident receipt of attention and assistance. A higher proportion of qualified staff was not shown to be a positive attribute but greater prior experience was associated with staff spending more time directly concerned with residents, less time doing ‘other’ activity and residents receiving more assistance. Measures of the internal organization and non-institutional milieu of the settings were not strongly related to staff activity. Conclusions The findings are consistent with previous research that there are diminishing marginal returns associated with increasing staff. Size of residence was unimportant. Links between service organization and staff performance require further research but retaining experienced staff appears to be important. As resident receipt of attention and assistance was unrelated to their adaptive behaviour level, there is a need to find ways to ensure that staff support matches the needs of residents better.
Article
Background This pilot study investigates organizational culture in small community-based residential services for people with intellectual disabilities, one of the under-researched determinants of staff behaviour and performance. Staff performance is of primary importance in the provision of quality services. Materials and methods Two matched residential units were assessed using COMPASS: A Multi-Perspective Evaluation of Quality in Home Life, and identified as ‘high’ and ‘low’ performing. The organizational culture of the units was assessed using the Organizational Culture Inventory in order to investigate any associations. Results The unit with better quality outcomes demonstrated a more positive organizational culture overall, with statistically significant lower scores on three negatively influential cultural styles, namely, oppositional, competitive and perfectionistic. Conclusions There may well be a meaningful relationship between organizational culture and quality outcomes, although the nature of this relationship is far from clear. The continuation of investigations into organizational culture is encouraged.
Article
Background An important question in community living is what factors influence the extent to which staff provide ‘active support’. Methods Engagement, care practices and a range of staff and organizational characteristics were studied in 72 residential homes serving 359 adults with intellectual disabilities. Managers in 36 settings were trained in person‐centred active support (PCAS). A group comparison design and multivariate analysis was used to investigate the relationship between variables. Results The PCAS group showed more active support, assistance, other contact from staff and engagement in meaningful activity but no difference in choice‐making or assessment of participation in activities of daily living. The PCAS group had more staff with a professional qualification, were more likely to think that challenging behaviour was caused by lack of stimulation, had attitudes more in line with a policy of community care, rated most care tasks as less difficult, and were more organized to deliver active support. The comparison group were more likely to think that challenging behaviour was learned negative behaviour, showed more teamwork and were more satisfied. Multivariate analysis identified a range of staff and organizational variables associated with engagement and active support. Conclusions The results suggest that some variables which have not hitherto been studied in relation with active support are associated with it. Professional qualification, knowledge and experience appear to be important as do some staff attitudes, clear management guidance, more frequent supervision and team meetings, training and support for staff to help residents engage in meaningful activity.
Book
Most writing on sociological method has been concerned with how accurate facts can be obtained and how theory can thereby be more rigorously tested. In The Discovery of Grounded Theory, Barney Glaser and Anselm Strauss address the equally Important enterprise of how the discovery of theory from data--systematically obtained and analyzed in social research--can be furthered. The discovery of theory from data--grounded theory--is a major task confronting sociology, for such a theory fits empirical situations, and is understandable to sociologists and laymen alike. Most important, it provides relevant predictions, explanations, interpretations, and applications. In Part I of the book, "Generation Theory by Comparative Analysis," the authors present a strategy whereby sociologists can facilitate the discovery of grounded theory, both substantive and formal. This strategy involves the systematic choice and study of several comparison groups. In Part II, The Flexible Use of Data," the generation of theory from qualitative, especially documentary, and quantitative data Is considered. In Part III, "Implications of Grounded Theory," Glaser and Strauss examine the credibility of grounded theory. The Discovery of Grounded Theory is directed toward improving social scientists' capacity for generating theory that will be relevant to their research. While aimed primarily at sociologists, it will be useful to anyone Interested In studying social phenomena--political, educational, economic, industrial-- especially If their studies are based on qualitative data.
Article
Features include the selection and sampling of cases, the problems of access, observation and interviewing, recording and filing data, and the process of data analysis.
Article
The present paper follows up the theme of research ethics that has been discussed in the British Journal of Learning Disabilities in recent years. We join the debate in the capacity of people involved in doing research on, rather than with, people with learning disabilities. We focus on our own quasi-experimental study evaluating the Intensive Interaction approach for pupils who are preverbal. We question our own practice, and illustrate some of the dilemmas which we have faced in our research and some of the compromises which we have reached.[ABSTRACT FROM AUTHOR].
Article
Sumario: What culture is and does -- The dimensions of culture -- How to study and interpret culture -- The role leadership in building culture -- The evolution of culture and leadership -- Learning cultures and learning leaders
Article
Large-scale reviews of research in deinstitutionalization and community living were last conducted about 10 years ago. Here we surveyed research from 1997 to 2007. Articles were included if the researchers based the study on original research, provided information on the participants and methodology, compared residential arrangements for adults with intellectual disability, and were published in English-language peer-reviewed journals. Sixty-eight articles were found. In 7 of 10 domains, the majority of studies show that community-based services are superior to congregate arrangements. These studies provide more evidence of the benefits of deinstitutionalization and community living and continue to indicate variability in results, suggesting that factors other than the basic model of care are important in determining outcomes.
Article
The level of resident's adaptive behaviour and staff facilitative practices are key sources of variation in outcomes for residents in community-based residential services. The higher the resident support needs the poorer their outcome. Although substantial investment has been made in values-based training for staff, their attitudes and the impact of these on practice is largely unexplored. The first study used ethnographic and action research methods to examine the daily lives of 25 residents with severe and profound intellectual disabilities (ID), who lived in five small group homes, and the attitudes of the staff supporting them. Thematic analysis of the data led to a proposition that although staff accept principles of inclusion, choice and participation for people with ID in general, they do not consider it feasible to apply these to the people with severe and profound ID to whom they provide support. The findings from a second study that used a group comparison design and administered a short questionnaire about staff attitudes to 144 direct-care staff and first-line managers working in disability services confirmed this hypothesis. The study suggests more focused attention is needed to staff understanding the values embedded in current policies and their application to people with more severe disabilities.
Article
Techniques previously used to assess the quality of care in large institutions (cf. Raynes, Pratt, & Roses, 1979) were adapted for a similar study of seven small community residences. Five areas were assessed: daily management practices, the physical environment, resident community involvement, staff-to-resident speech, and staff attitudes. Interitem correlations within each scale were generally high, and validity comparisons between the community residences and the larger institutions of Raynes et al. (1979) showed that scores on the measures were generally superior in the group homes. These dimensions of the caretaking environment varied independently of one another, clearly indicating the need for differentiated evaluation techniques.
Article
Staff stress and morale have been identified as major issues affecting the quality of services for people with intellectual disability. The present study investigates factors directly and indirectly associated with staff general distress, job strain and work satisfaction amongst staff in services for people with intellectual disability. As part of a large-scale survey of staff in services for people with intellectual disability, information was collected from 450 staff concerning general distress, job strain and work satisfaction, and a wide range of factors potentially associated with these outcomes. Path analyses revealed that three factors accounted for 28% of the variance in general distress scores: (I) wishful thinking, (2) stress linked to work-home conflict and (3) role ambiguity. Six factors accounted for 50% of the variance in job strain scores: (I) wishful thinking, (2) stress linked to a lack of staff support, (3) alienative commitment, (4) role ambiguity, (5) stressors linked to a low status job and (6) working longer contracted hours. Six factors accounted for 66% of the variance in work satisfaction scores: (I) stress linked to a low status job, (2) support from supervisors, (3) influence over work decisions, (4) alienative commitment, (5) support from colleagues and (6) older staff age. A range of factors indirectly associated with the three outcome measures was also identified. The models of general distress, job strain and work satisfaction empirically derived in the present study confirm and extend previous research in this area. The implications for organizations and future research are discussed.
Article
Information was collected on 63 adults in supported living residences, 55 adults in small group homes, and 152 adults in large group homes. Results indicated that (a) there were no statistically significant differences in service costs once these had been adjusted to take account of participant characteristics; (b) compared with participants living in small group homes, those in supported living residences had greater choice, participated in more community-based activities, experienced fewer scheduled activities, were more likely to have had their home vandalized, and were considered at greater risk of exploitation; (c) compared with participants living in large group homes, those in small group homes had larger social networks, more people in their social networks who were not staff, not family, and did not have mental retardation. These residents were considered at less risk of abuse.
Close to home: A local housing service and its impact on the lives of nine adults with severe and profound mental handicaps
  • D Felce
  • S Toogood
Felce, D., & Toogood, S. (1988). Close to home: A local housing service and its impact on the lives of nine adults with severe and profound mental handicaps. Kidderminster, England: British Institute of Mental Handicap [BIMH].
Group homes and community integration of developmentally disabled people: Micro-institutionalisation?
  • J C Sinson
Sinson, J. C. (1993). Group homes and community integration of developmentally disabled people: Micro-institutionalisation? London, England: Jessica Kingsley.
Person-centred active support: A handbook
  • B Ashman
  • J Ockenden
  • J Beadle-Brown
  • J Mansell
Ashman, B., Ockenden, J., Beadle-Brown, J., & Mansell, J. (2010). Person-centred active support: A handbook. Brighton, England: Pavilion.
Living with support in the community: Factors associated with quality-of-life outcome
  • Felce
Felce, D., & Perry, A. (2007). Living with support in the community: Factors associated with quality-of-life outcome. In S. Odom, R. H. Horner, M. E. Snell & J. Blacher (Eds.), Handbook of developmental disabilities (pp. 410-428). New York, NY: Guildford Press.