Professor Julie Beadle-Brown
Julie Beadle-Brown is a Professor in Intellectual and Developmental Disabilities at Kent and Professor in Disability at La Trobe University, Australia.
Professor Beadle-Brown completed her Masters in French and Pschology and PhD at the University of St Andrews, Scotland. Her PhD focused on imitation, theory of mind and play in autistic children and adults.
In 1998 Julie was appointed as Lecturer in Learning Disability to teach on the Service Issues and Research Methods modules of a newly developed MSc in Analysis and Intervention in Learning Disability. Since then, she has played a key role in developing the use of e-learning and distance learning at the Tizard Centre and has developed new programmes in Autism Studies at both undergraduate and postgraduate level.
- deinstitutionalisation and development of community-based services
- service design and quality
- person-centred active support and its implementation in services
- quality of life for people with disabilities with a particular focus on people with intellectual developmental disabilities
- supportive interventions for children and adults with autism and their families, teachers and support workers
- research based around the managers of learning disability services and the development of staff attitudes
- the exclusion of people with challenging behaviour from services
Professor Beadle-Brown convenes and teaches on the postgraduate courses in intellectual and developmental disabilities and autism studies with a particular focus on service issues and quality of life. She also convenes the work placement for postgraduate students.
She supervises PhD research in the following areas:
- PBS chartered Psychologist
- HCPC registered Practitioner Psychologist
- Senior Fellow of the School for Social Care Research
- member of the College of Experts of the Medical Research Council
- Secretary/Tresurer and Chair of the Comparative Policy and Practice Special Interest Research Group IASSIDD
Showing 50 of 123 total publications in the Kent Academic Repository. View all publications.
Iacono, T. et al. (2019). An exploration of communication within active support for adults with high and low support needs. Journal of Applied Research in Intellectual Disabilities [Online] 32:61-70. Available at: https://doi.org/10.1111/jar.12502.Background
The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs.
Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports.
We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC).
Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.
Bradshaw, J. et al. (2018). Managers’ views of skilled support. Journal of Applied Research in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jar.12444?Background
Quality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support.
Qualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis.
Service aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures.
Front?line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.
Stewart, K., Bradshaw, J. and Beadle-Brown, J. (2018). Evaluating service users’ experiences using Talking Mats®. Tizard Learning Disability Review [Online] 23:78-86. Available at: https://doi.org/10.1108/TLDR-05-2017-0023.Purpose
The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS).
This is a mixed-methods study, employing qualitative interviewing and observational measures.
Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination.
Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged.
TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS.
This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM.
Šiška, J. et al. (2018). Social Inclusion through Community Living: Current Situation, Advances and Gaps in Policy, Practice and Research. Social Inclusion [Online] 6:94-109. Available at: https://doi.org/10.17645/si.v6i1.1211.This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.
Beadle-Brown, J. et al. (2018). Imagining Autism: Feasibility of a Drama-Based Intervention on the Social, Communicative and Imaginative behaviour of Children with Autism. Autism: International Journal of Research and Practice [Online] 22:915-927. Available at: https://doi.org/10.1177/1362361317710797.We report the feasibility of a novel, school-based intervention, coined ‘Imagining Autism’, in which children with autism engage with drama practitioners though participatory play and improvisation in a themed multi-sensory “pod” resembling a portable, tent-like structure. 22 children, aged 7–12 years, from three UK schools engaged in the 10week programme. Measures of social interaction, communication, emotion recognition, along with parent and teacher ratings, were collected before and up to 12 months after the intervention. Feasibility was evaluated through 4 domains: (1) process (recruitment, retention, blinding, inter-rater reliability, willingness of children to engage), (2) resources (space, logistics), (3) management (dealing with unexpected changes, ease of assessment), and (4) scientific (data outcomes, statistical analyses). Overall, the children, parents and teachers showed high satisfaction with the intervention, the amount of missing data was relatively low, key assessments were implemented as planned, and evidence of potential effect was demonstrated on several key outcome measures. Some difficulties were encountered with recruitment, test administration, parental response, and the logistics of setting up the pod. Following several protocol revisions and the inclusion of a control group, future investigation would be justified to more thoroughly examine treatment effects.
Bigby, C., Bould, E. and Beadle-Brown, J. (2017). Implementation of active support over time in Australia. Journal of Intellectual & Developmental Disability [Online]:1-13. Available at: https://dx.doi.org/10.3109/13668250.2017.1353681.Background: Research indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services.
Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations.
Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training.
Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes.
Bigby, C., Bould, E. and Beadle-Brown, J. (2017). Comparing costs and outcomes of supported living with group homes in Australia. Journal of Intellectual & Developmental Disability, Journal of Intellectual & Developmental Disability [Online]:1-13. Available at: http://dx.doi.org/10.3109/13668250.2017.1299117.Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes.
Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes.
Results: QOL differed little, supported living was cheaper, and 30?35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living.
Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships.
Petri, G., Beadle-Brown, J. and Bradshaw, J. (2017). “More Honoured in the Breach than in the Observance”—Self-Advocacy and Human Rights. Laws [Online] 6:26. Available at: http://dx.doi.org/10.3390/laws6040026.Background: Since the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD), human rights have become central for disability advocacy. The CRPD requires that disabled people and their representative organisations (DPOs) have a prominent role in the implementation and monitoring of the Convention. However, the representation of people with intellectual disabilities or autistic people is still often indirect, carried out by parents or professionals.
Methods: This is a qualitative research which looks at how self-advocates (SAs) with intellectual disabilities or autism participate in DPOs and how they see the role of human rights and laws such as the CRPD in their advocacy. Data was collected in the UK and in Hungary between October 2016 and May 2017. A total of 43 advocates (SAs and other advocates) were interviewed. For the analysis, thematic analysis was used.
Results: findings indicate that most participants have limited knowledge of the CRPD and human rights. Human rights are usually seen as vague and distant ideas, less relevant to everyday lives. SAs may not feel competent to talk about the CRPD. The inclusion of SAs in DPOs is mostly tokenistic, lacking real participation.
Conclusions: The CRPD can only bring meaningful change to SAs if they get full membership in DPOs.
Bigby, C. and Beadle-Brown, J. (2016). Culture in Better Group Homes for People With Intellectual Disability at Severe Levels. Intellectual and Developmental Disabilities [Online] 54:316-331. Available at: https://doi.org/10.1352/1934-9556-54.5.316.Building on cultural dimensions of underperforming group homes this study analyses culture in better performing services. In depth qualitative case studies were conducted in 3 better group homes using participant observation and interviews. The culture in these homes, reflected in patterns of staff practice and talk, as well as artefacts differed from that found in underperforming services. Formal power holders were undisputed leaders, their values aligned with those of other staff and the organization, responsibility for practice quality was shared enabling teamwork, staff perceived their purpose as “making the life each person wants it to be,” working practices were person centered, and new ideas and outsiders were embraced. The culture was characterized as coherent, respectful, “enabling” for residents, and “motivating” for staff. Though it is unclear whether good group homes have a similar culture to better ones the insights from this study provide knowledge to guide service development and evaluation.
Bould, E. et al. (2016). Measuring practice leadership in supported accommodation services for people with intellectual disability: Comparing staff-rated and observational measures. Journal of Intellectual & Developmental Disability [Online] 43:174-182. Available at: http://dx.doi.org/10.3109/13668250.2016.1259466.Background Studies incorporating staff-rated or observational measures of practice leadership have
shown that where practice leadership is stronger, active support is better implemented. The study
aim was to compare measures of practice leadership used in previous research to determine the
extent of their correspondence.
Method A subset of data from a longitudinal study regarding 29 front-line managers working across
36 supported accommodation services in Australia was used. An observed measure of practice
leadership, based on an interview and observation of a front-line manager, was compared with
ratings of practice leadership completed by staff. The quality of active support was rated after a
2-hour structured observation.
Results Correlations between staff-rated and observed measures were non-significant. Only the
observed measure was correlated with the quality of active support.
Conclusions This study provides evidence to support using an observational measure of practice
leadership rather than reliance on staff ratings.
Bigby, C., Bould, E. and Beadle-Brown, J. (2016). Conundrums of supported living: The experiences of people with intellectual disability. Journal of Intellectual & Developmental Disability [Online] 42:309-319. Available at: https://doi.org/10.3109/13668250.2016.1253051.Background Dissatisfaction with the inflexibility of the group home model has led to the growth of supported living that separates housing from support and is thought to have greater potential for better quality of life outcomes. Comparative studies have had mixed findings with some showing few differences, other than greater choice in supported living. By investigating service user experiences of supported living this study aimed to identify how the potential of supported living might be better realised.
Method Thirty-four people with intellectual disability participated in 7 focus group interviews and 6 people in an individual interview. Data were analysed using grounded theory methods.
Results Although participants experienced greater choice and control over their everyday lives, they did not feel they controlled the way support was provided and experienced restrictions on lifestyle associated with low income. Despite their use of community places and varied social connections to family, friends, and acquaintances, most experienced loneliness.
Conclusions If the potential of supported living is to be realised, shortcomings of support arrangements must be addressed by, for example, greater consistency of support worker skills, consumer control over recruitment and rostering, and more skilled support to build friendships and manage difficult relationships.
Bould, E. et al. (2016). The role of practice leadership in active support: impact of practice leaders’ presence in supported accommodation services. International Journal of Developmental Disabilities [Online] 64:75-80. Available at: https://doi.org/10.1080/20473869.2016.1229524.Objectives: Research shows practice leadership to be a factor in the successful implementation of active support. The aim of the study was to explore differences in staff practice, associated with the presence of a practice leader in a shared supported accommodation service.
Methods: Quality of support and engagement for 189 service users with intellectual disability from 58 services were collected during a 2 h observation using the EMAC-R and ASM. The practice leader was present in 19 services (n = 59) and absent in 39 (n = 111). An Observed Measure of Practice Leadership was administered during a second visit to each service.
Results: When the practice leader was present, levels of engagement and active support were statistically higher (p < 0.01). Although measured at a different time, observed practice leadership was also higher in services where the practice leader was present during the first observation.
Conclusion: The level of observed practice leadership and presence of the practice leader appear to be associated with better quality of support. This finding provides further evidence of the importance of systems for supporting, monitoring, modelling, and improving staff practice for effective implementation of active support.
Richardson, L. et al. (2016). I felt that I deserved it - experiences and implications of disability hate crime. Tizard Learning Disability Review [Online] 21:80-88. Available at: http://dx.doi.org/10.1108/TLDR-03-2015-0010.Purpose
– The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents.
– Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff.
– Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively.
– A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism, carers, police and other agencies.
– Previous research has highlighted that victimisation is an issue for this group of people, but has never explored the prevalence and nature of such experiences in a representative sample. Neither has previous research brought together the perspectives of so many different agencies to offer recommendations that go across many sectors. The paper will be of interest to people with disabilities and their carers, professionals in health, social care and the Criminal Justice system.
Turnpenny, A. et al. (2016). Developing an Easy Read version of the Adult Social Care Outcomes Toolkit. Journal of Applied Research in Intellectual Disabilities [Online] 31:e36-e48. Available at: http://dx.doi.org/10.1111/jar.12294.Background
This paper reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities.
The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument.
Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options.
The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however its limitations must be recognised.
Bigby, C. and Beadle-Brown, J. (2016). Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference? Journal of Applied Research in Intellectual Disabilities [Online] 31:e182-e200. Available at: https://doi.org/10.1111/jar.12291.Background
The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes.
A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters.
Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings.
The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains.
Bigby, C. et al. (2015). We just call them people: positive regard as a dimension of culture in group homes for people with severe intellectual disability. Journal of Applied Research in Intellectual Disabilities [Online] 28:283-295. Available at: http://dx.doi.org/10.1111/jar.12128.BACKGROUND
A dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle-Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively.
Three in-depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review.
Consistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities.
This positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.
Beadle-Brown, J., Bigby, C. and Bould, E. (2015). Observing practice leadership in intellectual and developmental disability services. Journal of Intellectual Disability Research [Online] 59:1081-1093. Available at: http://dx.doi.org/10.1111/jir.12208.Background
Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures.
This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia.
The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support.
The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management.
Beadle-Brown, J. et al. (2015). Quality of life and quality of support for people with severe intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities [Online] online:0-0. Available at: http://dx.doi.org/10.1111/jar.12200.Background: People with severe and profound intellectual disabilities often spend substantial time isolated and disengaged. The nature and quality of the support appears to be important in determining quality of life.
Methods: Structured observations and staff questionnaires were used to explore the quality of life and quality of support for 110 people with severe and profound disabilities and complex needs.
Results: On average, people spent approximately 40% of their time engaged in meaningful activities, received contact from staff 25% of the time (6% in the form of assistance to be engaged). Just over one-third received consistently good active support, which was associated with other measures of quality of support and emerged as the strongest predictor of outcomes.
Conclusions: Quality of life and quality of support were relatively poor, although with about one-third of people receiving skilled support. Consistently good active support was the best predictor of outcome and proposed as a good indicator of skilled support.
Bigby, C. et al. (2014). Identifying good group homes: qualitative indicators using a quality of life framework. Intellectual and Developmental Disabilities [Online] 52:348-366. Available at: http://dx.doi.org/10.1352/1934-9556-52.5.348.Despite change toward more individualized support, group homes are likely to remain for people
with severe intellectual disability. As such, the search continues for ways to determine and
maintain the quality of these settings. This article draws on in-depth qualitative analysis of
participant observations conducted over 9–12 months in seven group homes for 21 people with a
severe and profound level of intellectual disability. It explores the conceptualization of good
outcomes and support for this group in terms of their quality of life and staff practices. The
qualitative indicators of good outcomes for this group using quality of life domains can be used by
auditors, community visitors, funders, advocates, or family members to guide observation and
judgements about group homes.
Ockenden, J., Ashman, B. and Beadle-Brown, J. (2014). Active Support - Fundamental to Positive Behaviour Support. Research and Practice in Intellectual and Developmental Disabilities [Online] 1:98-107. Available at: http://dx.doi.org/10.1080/23297018.2014.961528.Support for people with intellectual disabilities and challenging behaviour in the United Kingdom is currently under much scrutiny. Positive behaviour support has been put forward as the key approach for improving services for this group of people. Drawing on both the literature and on the practice experience of organisations, arguments are made that implementing active support can reduce the need for positive behaviour support and also support the implementation of positive behaviour support where this is needed. Key features of both active support and positive behaviour support are outlined and the fit between the two explained at both a general level and for the different stages of developing and implementing positive behaviour support interventions. It is suggested that implementing active support not only provides conditions in which challenging behaviour is likely to decrease, thereby reducing the need for the implementation of positive behaviour support, but, where such implementation is necessary, it can provide a valuable foundation upon which positive behaviour support can be built. Appreciating the extent to which active support complements and in fact sets the context for successful implementation of positive behaviour support will help practitioners in this field develop a successful approach to challenging behaviour.
Turnpenny, A. and Beadle-Brown, J. (2014). Development and outcomes of community-based services in Hungary. Journal of Applied Research in Intellectual Disabilities [Online] 27:340-340. Available at: http://dx.doi.org/10.1111/jar.12105.Aims: This study compares the characteristics and quality of life outcomes of people in institutions and group homes in Hungary.
Method: Fifteen group homes and institutions participated in the study. Six from each group home, and 12 individuals from each institution (N = 120) were selected randomly to take part. A sub-sample (n = 60) of matched groups was selected based on age, gender and adaptive skills. Data about quality of life was collected in six domains using informant reports and direct observation during field visits. Domains included: community participation, social relationships, self-determination and choice, health and psychotropic medication; engagement in meaningful activities, and quality of staff support.
Results: Smaller-scale community-based arrangements in Hungary have similar advantages and weaknesses to those reported in other countries. People who live in group homes enjoyed more choice and participated in more domestic activities. Community participation was related to the location of the setting rather than type of provision. People who lived in villages and rural areas had fewer opportunities in their local community. Levels of psychotropic medication were alarmingly high in all three groups, particularly in institutions and independent group homes.
Conclusion: Limitations as well as implications for policy and practice are discussed.
Beadle-Brown, J. et al. (2014). Practice leadership and active support in residential services for people with intellectual disabilities: an exploratory study. Journal of Intellectual Disability Research [Online] 58:838-850. Available at: http://dx.doi.org/10.1111/jir.12099.BACKGROUND: We hypothesised that a key factor determining the quality of active support was 'practice leadership' - provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support.
METHOD: Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons.
RESULTS: There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support.
CONCLUSIONS: A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.
Turnpenny, A. et al. (2014). Promoting participation of people with intellectual and developmental disabilities in social care research-developing an adapted version of ASCOT for self-report. Journal of Applied Research in Intellectual Disabilities [Online] 27:345-345. Available at: http://dx.doi.org/10.1111/jar.12105.
Turnpenny, A. and Beadle-Brown, J. (2014). Use of quality information in decision-making about health and social care services - a systematic review. Health and Social Care in the Community [Online] 23:349-361. Available at: http://dx.doi.org/10.1111/hsc.12133.User choice and personalisation have been at the centre of health and
social care policies in many countries. Exercising choice can be especially
challenging for people with long-term conditions (LTC) or disabilities.
Information about the quality, cost and availability of services is central
to user choice. This study used systematic review methods to synthesise
evidence in three main areas: (i) how people with LTC or disabilities and
their family carers ?nd and access information about the quality of
services; (ii) how quality information is used in decision-making; and
(iii) what type of quality information is most useful. Quality information
was de?ned broadly and could include formal quality reports (e.g.
inspection reports, report cards, etc.), information about the characteristics
of a service or provider (e.g. number and quali?cations of staff, facilities,
etc.) and informal reports about quality (e.g. personal experience, etc.).
Literature searches were carried out using electronic databases in January
2012. Thirteen papers reporting ?ndings from empirical studies published
between 2001 and 2012 were included in the review. The majority of
papers (n = 9) had a qualitative design. The analysis highlighted the use
of multiple sources of information in decision-making about services and
in particular the importance of informal sources and extended social
networks in accessing information. There is limited awareness and use of
‘of?cial’ and online information sources. Service users or family carers
place greater emphasis on general information and structural indicators.
Clinical or quality-of-life outcomes are often dif?cult to interpret and
apply. Trust emerged a key issue in relation to quality information.
Experiential and subjective information is highly valued and trusted.
Various barriers to the effective use of quality information in making
choices about services are identi?ed. Implications for policy and future
research are discussed.
Bradshaw, J. et al. (2013). Quality of communication support for people with severe or profound intellectual disability and complex needs. Communication Matters 27:24-26.This paper describes the differences in communication strategies between good and poor services for people with severe or profound intellectual disability and complex needs.
As part of a wider research project into skilled support (Beadle-Brown et al, in submission), information about communication was collected using a range of measures. This included observations of alternative and augmentative communication, reviews of written information, and interviews with managers.
Most staff did not use appropriate and effective ways of communicating with people they supported. Despite staff rating 60% of people they supported as non-verbal, less than 20% of observed staff communication involved the use of AAC. A third of people were being supported in a team where communication was rated as good and appropriate most/all of the time. Services providing good support in terms of providing choice, assistance and higher levels of activity were also better at communicating with people.
Communication partnerships were significantly better in services which are providing skilled support in other areas. Person-Centred Active Support is one way in which staff can acquire these skills. This type of intervention, which aims to give staff the core skills necessary, may be necessary to ensure the success of communication interventions.
Mansell, J., Beadle-Brown, J. and Bigby, C. (2013). Implementation of active support in Victoria, Australia: an exploratory study. Journal of Intellectual and Developmental Disability [Online] 38:48-58. Available at: http://dx.doi.org/10.3109/13668250.2012.753996.Background Active support is an effective intervention to support engagement of residents with intellectual disability in group homes. This survey explored resident characteristics of the people supported by organisations implementing active support, the provision of active support, its procedures and systems, and resident engagement in meaningful activity and relationships. Method Information was collected through questionnaires and direct observation of 33 group homes from 6 organisations in Victoria, Australia, with a 5-10-year history of implementing active support. Results Residents with lower support needs were engaged with little staff contact or assistance. Use of active support systems and structures was mixed. Only one organisation consistently provided good active support. Conclusions Administrative systems and structures are not sufficient to change staff interaction and thus resident experience. Shared supported accommodation services may represent an inefficient use of resources for more able residents, as staff resources are not maximised to support for resident engagement.
Beadle-Brown, J., Hutchinson, A. and Whelton, B. (2012). Person-Centred Active Support - Increasing Choice, Promoting Independence and Reducing Challenging Behaviour. Journal of Applied Research in Intellectual Disabilities [Online] 25:291-307. Available at: http://dx.doi.org/10.1111/j.1468-3148.2011.00666.x.Background Previous research has found that active support is effective at increasing levels of participation in activities and supporting a good quality of life for people with intellectual disabilities. However, there has been little research on the effect of active support on other outcome measures. Methods This study uses observational methodology, combined with staff-rated measures, to explore the impact of the implementation of person-centred active support on the lives of 30 people with severe and profound intellectual disabilities living in small group homes. Results Analysis indicated that significant increases in both the amount of assistance people received and the quality of that assistance were accompanied by significant increases in engagement, participation, choice-making opportunities and a significant reduction in challenging behaviour and in particular, self-stimulatory behaviour. Conclusions The paper discusses the implications of the findings for both practice and for further research.
Netten, A. et al. (2012). Quality of life outcomes for residents and quality ratings of homes: is there a relationship? Age and Ageing [Online] 41:512-517. Available at: http://dx.doi.org/10.1093/ageing/afs050.Background: quality ratings of care homes are used by decision makers in the absence of direct information about outcomes. However, there is little evidence about the relationship between regulators' ratings of homes and residents' quality of life outcomes.
Objectives: to capture social care-related quality of life (SCRQoL) outcomes for residents and investigate the relationship between outcomes and regulator quality ratings of homes.
Methods: data were collected for 366 residents of 83 English care homes for older people inspected during 2008. Outcomes were measured using the Adult Social Care Outcomes Toolkit (ASCOT). Multivariate multilevel modelling was used to investigate the relationship between quality of life outcomes and star ratings of homes, controlling for resident and home characteristics.
Results: care homes were delivering substantial gains in SCRQoL, but were more successful in delivering ‘basic’ (e.g. personal cleanliness) than higher-order domains (e.g. social participation). Outcomes were associated with quality ratings of residential homes but not of nursing homes.
Conclusions: the approach to providing quality ratings by the regulator in England is currently under review. Future quality indicators need to demonstrate their relationship with quality of life outcomes if they are to be a reliable guide to commissioners and private individuals purchasing care.
Milne, A. et al. (2012). The characteristics and management of elder abuse: evidence and lessons from a UK case study. European Journal of Social Work [Online] 16:489-505. Available at: http://dx.doi.org/10.1080/13691457.2012.722983.Despite older people representing a significant majority of victims of abuse in the UK and Europe, evidence about its characteristics and management is limited. This article reports on an analysis of adult protection referrals for older people over an eight year period in two English local authorities. It extends understanding of the characteristics of elder abuse and identifies lessons for its effective management. Findings suggest that older people are at particular risk of multiple and physical abuse. Those living alone are especially vulnerable to financial abuse and those living in a care home to multiple abuse. The most common sites of abuse were the person's own home or a care home. Just two fifths of abuse referrals were confirmed, with the vast majority involving multi-agency consultation and most resulting in ongoing monitoring. Findings also suggest that risk is a product of the intersection of dependency and setting and that information about user and carer need—especially the nature of disability—could enhance the quality of adult protection data and safeguarding responses. The study underscores the need for adult protection legislation and of committing professional resources to the prevention, identification, assessment and management of elder abuse across Europe.
Mansell, J. and Beadle-Brown, J. (2012). Active support: enabling and empowering people with intellectual disabilities. [Online]. London: Jessica Kingsley Publishers. Available at: http://www.jkp.com/catalogue/book/9781849051118.Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate fully in all aspects of their lives. This evidence-based approach is particularly effective for working with people with more severe disabilities, and is of growing interest to those responsible for providing support and services.
The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful activity as active participants, and look at the communication style needed to foster positive relationships between carers and the people they are supporting. Highlighting the main issues for those trying to put Active Support into practice, they explain what is needed on a day-to-day basis to support the implementation, improvement and maintenance of the approach, along with possible solutions for the difficulties they may encounter. Finally, they look at how to integrate Active Support with other person-centred approaches, drawing on examples from various organisations and individual case studies.
The definitive text on Active Support, this book will be essential reading for anyone professionally concerned with the quality of life of people with intellectual disabilities, including psychologists, behaviour specialists, social workers, care managers, occupational therapists and inspectors and regulators of services, as well as families.
Siska, J. et al. (2017). Active citizenship and community living in Europe – current policy, practice and research. in: Halvorson, R. et al. eds. The Changing Disability Policy System: Active Citizenship and Disability in Europe Volume 1. Abingdon UK and New York: Routledge, pp. 72 -89. Available at: https://www.routledge.com/The-Changing-Disability-Policy-System-Active-Citizenship-and-Disability/Halvorsen-Hvinden-Bickenbach-Ferri-Guillen-Rodriguez/p/book/9781138652880.This chapter draws on findings from a European Commission funded study looking at Active Citizenship for people with disabilities across 9 European countries. The chapter focuses in particular on community living and looks at the living situation of people with disabilities and at the barriers and facilitators of community living. It draws on analysis of policy, statistics and existing research from each country and on interviews with a range of expert informants in each country.
Siska, J. et al. (2017). Change and diversity in community living in Europe – the experiences of persons with disabilities. in: Halvorson, R. et al. eds. Understanding the Lived Experiences of Persons with Disabilities in Nine Countries - Active Citizenship and Disability in Europe Volume 2. Abingdon, UK: Routledge, pp. 49-65. Available at: https://www.routledge.com/Understanding-the-Lived-Experiences-of-Persons-with-Disabilities-in-Nine/Halvorsen-Hvinden-Beadle-Brown-Biggeri-Tossebro-Waldschmidt/p/book/9781138652927.This chapter presents the findings from interviews with 200 people with disabilities across 9 European countries focused on their living situation, the support they receive and the barriers and facilitators to active citizenship through community living.
Beadle-Brown, J. and Hutchinson, A. (2016). Person-centred active support – the cake not the icing. in: Carr, A. et al. eds. Handbook on Intellectual Disability and Clinical Psychology Practice. Abingdon, Oxfordshire: Routledge, pp. 211-239. Available at: https://www.routledge.com/9781138806368.
Beadle-Brown, J. and Mansell, J. (2012). Person-centred active support – enabling people with intellectual disabilities to have a good life in the community (Translated into Finnish). in: Rajalahti, A. ed. Aktiivinen tuki - Näkymiä tukea tarvitsevan henkilön osallisuuteen. Tempere, Finland: Kehitysvammaisten Palvelusäätiö.
Conference or workshop item
Turnpenny, A. et al. (2016). Use of information on outcomes and quality of services in decision making about services for people with intellectual disabilities and autism. in: Lancaster Disability Studies Conference 2016.. Available at: https://www.lancaster.ac.uk/disabilityconference/documents/CEDR16%20Book%20of%20Abstracts0508.pdf.Background:
User choice has been at the centre of government policy on social care. Information on the quality and availability of services is central to user choice. This study aimed to explore decision-making – particularly the role of quality information – about services for adults with learning disabilities or autism.
Semi-structured qualitative interviews were conducted with 11 service users, 12 family carers, eight care managers and four advocates. Interviews were transcribed and coded using a combination of a priori, emergent and in vivo codes. The segments were analysed using Attride-Stirling’s thematic networks tool. Basic, organising and global themes were identified by groups
of actors and their experiences compared and contrasted.
Global themes that emerged were related to the type and sources of information, the decisionmaking process, barriers to choice, and the emotional aspects of the process. Many individuals and families had limited access to information,
which in turn restricted choice. Care managers strive to offer options to individuals, but this could be restricted by availability, urgency of the move or other challenges.
This study supports existing evidence that suggests low awareness and limited use of quality information among users of social services and their families in England. Care managers had access to a broader range of sources of information and were often gatekeepers for this information. Implications for commissioners, care managers, the Care Quality Commission, families
and individuals themselves will be highlighted.
Bradshaw, J. et al. (2014). Quality of communication support for people with intellectual and developmental disabilities living in supported accommodation settings. in: 4th IASSID-Europe congress. Wiley-Blackwell, pp. 341-341.
Whelton, B. et al. (2014). Manager and Staff Perspectives of Skilled Support. in: 3rd IASSID-Europe congress. Wiley-Blackwell, pp. 342-342.
Richardson, L. et al. (2014). Quality of life and quality of support for people with severe Intellectual disabilities and autism. in: 4th IASSID-Europe congress. Wiley-Blackwell, pp. 341-341.
Richardson, L. et al. (2014). Imagining Autism: evaluation of a drama based intervention for children with autism-the views of teachers and parents. in: 4th IASSID-Europe congress. Wiley-Blackwell, pp. 343-344.
Beadle-Brown, J. et al. (2014). Imagining Autism: impact of a drama based intervention on the social communicative and imaginative behaviour of children with autism. in: 4th IASSID-Europe congress. Wiley-Blackwell, pp. 343-343.
Beadle-Brown, J. et al. (2012). The cost and outcomes of skilled support for people with severe intellectual disability and complex needs. in: 14th World Congress of the International Society for the Scientific Study of Intellectual Disability. Wiley-Blackwell, pp. 773-773.
Beadle-Brown, J. and Murphy, B. (2016). What does good look like? A guide for observing in services for people with learning disabilities and/or autism [PDF on website]. Available at: https://www.unitedresponse.org.uk/what-does-good-look-like.This resource provides an overview of what good support looks like in services for people with learning disabilities and/or autism. The definition of “good” is based on both research and good practice and emphasises the nature and quality of the support needed to ensure good quality of life outcomes for people with learning disabilities and/or autism.
Turnpenny, A. et al. (2018). Mapping and Understanding Exclusion: Institutional, coercive and community-based services and practices across Europe. Mental Health Europe.This report entitled “Mapping and Understanding Exclusion- Institutional, coercive and community-based services and practices across Europe’’ is a new and expanded edition of Mental Health Europe’s 2012 Mapping Exclusion report. The report was put together by the University of Kent and Mental Health Europe (MHE), with the help of MHE members and partner organisations, and with support from the Open Society Mental Health Initiative and the European Union’s Rights Equality and Citizenship Programme. The report aims to capture updated and more comprehensive information on European countries’ mental health laws, the use of involuntary or forced placements and treatments, the practice of seclusion and restraint, as well as emerging issues in the mental health field in Europe. In mapping mental health systems across Europe, the report also sheds light on the situation of human rights for people who use mental health services and people with psychosocial disabilities. This time around there is a special focus on the stories of people who have experienced institutionalisation and coercion in mental health services which we hope will contribute to a more profound understanding of the exclusion these individuals face in society.
The report shows that while the situation described in 2012 has changed somewhat, there is still a substantial number of people with mental health problems living in institutions across Europe and in need of community-based services. Although reforms have taken place, the report shows that there are several barriers such as the poor cooperation between social and health authorities, lack of human rights compliant community-based services, trans-institutionalisation and austerity. Furthermore, in recent years deinstitutionalisation has been painted as a largely Central and Eastern European issue, however institutions exist in many Western countries as well, including France, Belgium, Ireland, the Netherlands, Portugal, and Germany, where tens of thousands of people with mental health problems are still living and where little is being done about this situation. In Central and Eastern Europe, the implementation of EU-funded deinstitutionalisation programmes has been slow, and there are limited data about the actual outcomes of these programmes for people with mental health problems.
The personal testimonies which were graciously provided by people with lived experience of coercive measures and collected for this report show that involuntary placement and treatment can have long-term and devastating effects on people’s lives. Lack of information before and during admission, poor physical conditions, forced medication with severe side effects, the absence of legal aid, physical and emotional harm, social and physical isolation, and stigma all featured in personal testimonies of ex-users and survivors.
In the previous Mapping Exclusion report in 2012, several countries were planning or implementing progressive – and promising – legal capacity reforms. However, by 2017 our report found that only some countries have actually changed their relevant laws and practical implementation of supported decision-making remains wanting almost everywhere. Overall the evidence collected in this report shows that the human rights issues facing people with mental health problems and psychosocial disabilities both within and outside of mental health services should still be of great concern.
Whelton, B. et al. (2015). Making the Adult Social Care Outcomes Toolkit Easy Read. QORU working paper. Available at: http://www.pssru.ac.uk/publication-details.php?id=4978.
Bradshaw, J. et al. (2015). CPD curriculum Guide for Social Workers who are Working with People on the Autism Spectrum. Department of Health. Available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/467394/Pt2_Autism_Guide_Accessible.pdf.
Turnpenny, A. et al. (2015). Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) - Appendix. QORU working paper. Available at: http://www.pssru.ac.uk/publication-details.php?id=4907.
Turnpenny, A. et al. (2015). Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT). QORU working paper.
Beadle-Brown, J. et al. (2014). Living in Fear: Better outcomes for people with learning disabilities and autism. Tizard Centre. Available at: http://www.mcch.org.uk/pages/multimedia/db_document.document?id=8009.In the UK, almost all people with learning disabilities and autism live either in the family home or with support in their own home or a community based residential service. How much contact people have with their community and the support they have to access their community safely often depends on where they live and their level of ability (Emerson and Hatton, 20081). As people have become more visible and active in their local communities, the issue of personal safety has increased in relevance and importance. The media, official sources such as public enquiries and a
small number of recent research studies have all highlighted disabled people’s experiences of victimisation in the community and in particular the problem of disability hate crime. The issue is one of human rights – under the UN Convention on the Rights of Persons with a Disability, article 19(2006) states that people with disabilities have a right to a life in the community – not just a house. The European Convention on Human Rights states that all people have a right to freedom from persecution and torture and a right to liberty and security. The UK Disability
Discrimination Act (2005) clearly sets out the expectation that people with disabilities should be included and not discriminated against in terms of access to services and facilities, employment, education to name just a few. The Mental Capacity Act (2005) clearly sets out that people with intellectual disabilities should be assumed to have capacity for each individual decision they have to make unless strong evidence suggests otherwise.
Research report (external)
Beadle-Brown, J. et al. (2012). Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs. NIHR.
Beadle-Brown, J. et al. (2012). Engagement of People with Long-Term Conditions in Health and Social Care Research: Barriers and Facilitators to Capturing the Views of Seldom Heard Population. [Online]. Quality and Outcomes of Person-Centred Care Policy Research Unit. Available at: http://www.qoru.ac.uk/wp-content/uploads/2013/02/E1_1-Report-ID4373.pdf.