Portrait of Professor Julie Beadle-Brown

Professor Julie Beadle-Brown

Professor in Intellectual and Developmental Disabilities


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.  

Research interests

  • 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
  • mapping and understanding exclusion in partnership with Mental Health Europe


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 136 total publications in the Kent Academic Repository. View all publications.


  • Petri, G., Beadle‐Brown, J. and Bradshaw, J. (2020). Redefining Self‐Advocacy: A Practice Theory‐Based Approach. Journal of Policy and Practice in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jppi.12343.
    The disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores “practice theory” through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: “informing and being informed,” “using media,” “supporting each other,” “speaking up,” and “bureaucratic duties.” Contrary to several previous studies on self‐advocacy that emphasized “speaking up” as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are “para‐advocacy” practices that may or may not lead directly to “speaking up.” Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates.
  • Bigby, C., Bould, E., Iacono, T. and Beadle-Brown, J. (2019). Predicting good Active Support for people with intellectual disabilities in supported accommodation services: Key messages for providers, consumers and regulators. Journal of Intellectual & Developmental Disability [Online]. Available at: https://doi.org/10.3109/13668250.2019.1685479.
    Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services.
  • Bigby, C., Bould, E., Iacono, T. and Beadle-Brown, J. (2019). Quality of practice in supported accommodation services for people with intellectual disabilities: What matters at the organisational level. Journal of Intellectual and Developmental Disability [Online]. Available at: http://dx.doi.org/10.3109/13668250.2019.1671965.
    Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services.

    Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support.

    Results: Qualitative analyses revealed three conceptual categories. Senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice, understood Active Support, and strongly supported practice leadership. In these organisations practice leadership was structured close to every-day service delivery, and as part of front-line management.

    Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures.
  • Bigby, C., Bould, E., Iacono, T., Kavanagh, S. and Beadle-Brown, J. (2019). Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model. Journal of Applied Research in Intellectual Disabilities [Online]. Available at: https://doi.org/10.1111/jar.12675.
    Background: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support. Methods: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM). Results: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support. Conclusions: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership.
  • Bould, E., Bigby, C., Iacono, T. and Beadle-Brown, J. (2019). Factors associated with increases over time in the quality of ActiveSupport in supported accommodation services for people with intellectual disabilities: A multi-level model. Research in Developmental Disabilities [Online] 94:103477. Available at: https://doi.org/10.1016/j.ridd.2019.103477.
    Background: Disability support organisations have embraced Active Support, but it has proved difficult to embed in services. Aims: This study aimed to identify the factors associated with increases over time in the quality of Active Support. Method: Data were collected on the predicted variable of the quality of Active Support, and predictor variables of service user, staff and service characteristics, including practice leadership, and composition and size of services from 51 services in 8 organisations over 2–7 time points. Data were analysed using multi-level modelling. Results: There was significant linear change in Active Support scores (group mean centered at the organisational level) over time. Individuals with lower support needs received better Active Support and those with higher support needs experienced greater increases over time. Stronger practice leadership and more staff with training in Active Support were significant predictors of the quality of Active Support. Larger services with seven or more individuals and where there was a very heterogeneous mix of individuals were associated with lower quality of support. Conclusions: Ensuring strong practice leadership, and staff training in Active Support that emphasises the principle of adapting support to each individual’s level of ability and preferences are key to delivering high levels of Active Support.
  • Šiška, J., Yirgashewa, B., Beadle-Brown, J. and Jan, Z. (2019). Role of resource centres in facilitating inclusive education: experience from Ethiopia. Disability and Society [Online]. Available at: https://doi.org/10.1080/09687599.2019.1649120.
    This article focuses on access of students with disabilities to education in Ethiopia and, in particular, on the role of inclusive education resource centres (IERCs). A mixed-methods approach was used to collect both quantitative and qualitative data. The participants were school administrators, itinerant teachers, special educators, regular classroom teachers, and school directors. It was identified that a large number of students and teachers benefitted from the support provided by IERCs. The target schools are equipped with materials that support inclusive pedagogy. The awareness of parents and communities is gradually changing, except in some unreached communities. As a result, the number of students with disabilities enrolled is increasing. There were some barriers observed, such as assignment of itinerant teachers to a large number of satellite schools, high turnover of local government officials, and whether there was investment in the sustainability of IERCs and the positive outcomes observed.
  • Beadle-Brown, J. and Bradshaw, J. (2019). Commentary on Consumer behaviour analysis and non-adoption of behavioural interventions: implications for managerial action. Tizard Learning Disability Review [Online] 24:108-112. Available at: https://doi.org/10.1108/TLDR-05-2019-0019.
    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.

    This commentary examines what is needed for change and reflects on staff culture.

    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.

    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.
  • Iacono, T., Bould, E., Beadle?Brown, J. and Bigby, C. (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.
    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.
  • Beadle-Brown, J. and Roberts, R. (2019). Challenging the status quo. Commentary on “Mothers’ experiences of the transition of young people with autism spectrum disorder to adult care” (McMinn, Schulz, & Ludlow, 2019). Research and Practice in Intellectual and Developmental Disabilities [Online] 6:139-146. Available at: https://dx.doi.org/10.1080/23297018.2019.1629333.
  • Beadle-Brown, J., Wilkinson, D., Richardson, L., Shaughnessy, N., Trimingham, M., Leigh, J., Whelton, B. and Himmerich, J. (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.
  • 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.
    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.

    Research limitations/implications
    Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged.

    Practical implications
    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., Beadle-Brown, J., Ká?ová, Š and Šumníková, P. (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.
  • Bradshaw, J., Beadle-Brown, J., Richardson, L., Whelton, B. and Leigh, J. (2018). Managers’ views of skilled support. Journal of Applied Research in Intellectual Disabilities [Online] 31:873-884. 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.

    Method: 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.

    Results: 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.

    Conclusions: Front?line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed.
  • 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., 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.
  • Bould, E., Beadle-Brown, J., Bigby, C. and Iacono, T. (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.
  • Turnpenny, A., Caiels, J., Whelton, B., Richardson, L., Beadle-Brown, J., Crowther, T., Forder, J., Apps, J. and Rand, S. (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.
    Method: 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.
    Results: Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options.
    Conclusions: 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.
    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. 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., Beadle-Brown, J., Bigby, C. and Iacono, T. (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., Beadle-Brown, J., Bradshaw, J., Guest, C., Malovic, A. and Himmerich, J. (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.
    – 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.

    Social implications
    – 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.
  • Bigby, C., Knox, M., Beadle-Brown, J. and Clement, T. (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.
    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.

    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., Leigh, J., Whelton, B., Richardson, L., Beecham, J., Bäumker, T. and Bradshaw, J. (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.
  • 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). 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.
  • Beadle-Brown, J., Mansell, J., Ashman, B., Ockenden, J., Iles, R. and Whelton, B. (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. 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.
  • Turnpenny, A., Whelton, B., Richardson, L., Beadle-Brown, J., Caiels, J., Crowther, T., Apps, J. and Malley, J. (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.
  • Bigby, C., Knox, M., Beadle-Brown, J. and Bould, E. (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.

Book section

  • Siska, J., Beadle-Brown, J., Kanova, S. and Kittelsaa, A. (2017). Change and diversity in community living in Europe – the experiences of persons with disabilities. In: Halvorson, R., Hvinden, B., Beadle-Brown, J., Biggeri, M., Tossebro, J. and Waldschmidt, A. 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.
  • Siska, J., Beadle-Brown, J., Kanova, S. and Tossebro, J. (2017). Active citizenship and community living in Europe – current policy, practice and research. In: Halvorson, R., Hvinden, B., Bickenback, J., Derri, D. and Rodrigues, A. M. G. 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.
  • Beadle-Brown, J. and Hutchinson, A. (2016). Person-centred active support – the cake not the icing. In: Carr, A., Linehan, C., O’Reilly, G., Noonan Walsh, P. and McEvoy, J. eds. Handbook on Intellectual Disability and Clinical Psychology Practice. Abingdon, Oxfordshire: Routledge, pp. 211-239. Available at: https://www.routledge.com/9781138806368.

Conference or workshop item

  • Turnpenny, A., Whelton, B., Richardson, L. and Beadle-Brown, J. (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.
    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.
  • Whelton, B., Leigh, J., Beadle-Brown, J., Richardson, L. and Bradshaw, J. (2014). Manager and Staff Perspectives of Skilled Support. In: 3rd IASSID-Europe Congress. Wiley-Blackwell, pp. 342-342.
  • Beadle-Brown, J., Richardson, L., Wilkinson, D., Shaughnessy, N., Trimingham, M., Leigh, J., Whelton, B. and Himmerich, J. (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.

Internet publication

  • Beadle-Brown, J. and Murphy, B. (2016). 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., Petri, G., Finn, A., Beadle-Brown, J. and Nyman, M. (2018). Mapping and Understanding Exclusion: Institutional, Coercive and Community-Based Services and Practices across Europe. Mental Health Europe. Available at: https://doi.org/10.22024/UniKent/01.02/64970.
    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.
  • Bradshaw, J., Mills, R., Beadle-Brown, J., Reeves, J. and Drew, I. (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.
  • Whelton, B., Richardson, L., Turnpenny, A., Caiels, J., Crowther, T., Apps, J., Beadle-Brown, J. and Rand, S. (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.
  • Turnpenny, A., Caiels, J., Crowther, T., Richardson, L., Whelton, B., Beadle-Brown, J., Apps, J. and Rand, S. (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., Caiels, J., Crowther, T., Richardson, L., Whelton, B., Beadle-Brown, J., Apps, J. and Rand, S. (2015). Developing an Easy Read Version of the Adult Social Care Outcomes Toolkit (ASCOT). QORU working paper.
  • Beadle-Brown, J., Richardson, L., Guest, C., Malovic, A., Bradshaw, J. and Himmerich, J. (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)

  • Bradshaw, J., Turnpenny, A., Beadle-Brown, J., Milton, D. and Murphy, G. (2020). A Scoping Report on Social Care for Autistic Adults. [Online]. Vol. 23. Available at: https://doi.org/10.21955/amrcopenres.1114922.1.
    The aim of this rapid scoping exercise has been to identify gaps and priorities for adult social care research in autism in order to help Autistica to:

    - Identify key subtopics within adult social care in autism;
    - Understand what we currently know from research on social care in autism;
    - Identify gaps in the literature and the potential impact of these gaps on the outcomes experienced by autistic people;
    - Identify key opportunities for research;
    - Make strategic recommendations for impactful research.

    The review was intended to include people from across the autism spectrum and to take a broad view of social care. The review was to focus specifically on the quantity and quality of the evidence to social care related interventions, assessing a range of outcome measures but with a particular focus on Autistica’s vision of people living ‘long, happy and healthy lives’. Where possible findings related to cost effectiveness were also to be extracted.
  • Bigby, C., Bould, E., Iacono, T. and Beadle-Brown, J. (2019). Enabling Engagement and Inclusion: Organisational Factors That Embed Active Support in Accommodation Services for People With Intellectual Disabilities. [Online]. Living with Disability Research Centre, La Trobe University. Available at: http://hdl.handle.net/1959.9/568523.


  • Hughes, J. (2015). A Parent-Mediated Naturalistic Behavioural Intervention for Young Children With Autism Spectrum Disorder.
    There are several studies that demonstrate the effectiveness of Pivotal Response Training (PRT) as an evidence-based intervention for children with ASD. However, very few researchers have conducted studies on parent’s use of these strategies, specifically in naturally occurring contexts (i.e., home setting). This study was a preliminary attempt to teach parents how to implement the six motivational procedures of PRT during everyday routines. A concurrent multiple baseline design across nine parent-child dyads consisting of baseline, intervention, and post-intervention phases was utilized. Parent-child interactions were conducted in a free play context to code for parent in- structions or comments provided, parental responsiveness, and changes in the children’s social communication behaviours. Results of the study showed improvements in social communication and decreases in challenging behaviour, as a result of the parent-mediated intervention. Additional- ly, the results of the study suggest that in spite of the lack of consistent fidelity at the specified 80% criterion, children with autism still demonstrated social communication, play, and behavioural ben- efits, during interactions with their parents. Parents reported lower levels of stress and were overall satisfied with the intervention. Findings from this study demonstrate the feasibility of PRT parent- mediated interventions based on PRT conducted in natural environments.


  • Linehan, C., Aranten-Bergman, T., Beadle-Brown, J., Bigby, C., Birkbeck, G., Bradley, V., Brown, M., Bredewold, F., Chirwa, M., Kanova, S., Kroll, T., MacLachlan, M., Narayan, J., Nearchou, F., Nolan, A., O’Donovan, M., Santos, F., Siska, J., Tideman, M. and Tossebro, J. (2020). COVID-19 IDD: A global survey exploring the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. HRB Open Research [Online] 3:39. Available at: https://doi.org/10.12688/hrbopenres.13077.1.
    Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care.
    Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan).
    Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.
  • Beadle-Brown, J., Beecham, J., Bäumker, T., Leigh, J., Whelton, B. and Richardson, L. (2020). Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities.
    Background: With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. Methods: In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. Results: People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time and there was no evidence of higher total costs for those receiving good support. Conclusions: The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality.
Last updated