Search

Purpose: This paper is a commentary that aims to address themes arising from the article by Morgan titled "Wales and Autism: The Impact of Philanthropy Matched with Ambition". Design/methodology/approach: This opinion piece considers the broader impact of stakeholder engagement in the field of autism, including how the dissemination of evidence-based support could be made more accessible for autistic people, their families and carers and philanthropists. Findings: This paper highlights the link between stakeholder engagement and meaningful change in policy and practice in the field of autism. It highlights the need for philanthropists to invest in evidence-based support but highlights the difficulty in identifying and accessing such support. This piece supports the use of evidence and gap maps (EGMs) to increase the accessibility of autism research and evidence. Originality/value: While stakeholder engagement is encouragingly rising in this field, most of the evidence is held in academic journals, which are behind paywalls and, therefore, inaccessible to many autistic people, their families, carers and associated professionals. Displaying evidence using EGMs provides an accessible way for autistic people and those who support them to identify possible avenues of support quickly and allows philanthropists to direct research funding to areas of high priority. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to place on record the impact made on government policy and research by Autism Cymru, a small charity that existed in Wales between 2001 and 2014. The success of Autism Cymru resulted directly from philanthropic funding, applied with strategic vision and genuine ambition. Design/methodology/approach: A retrospective, chronological viewpoint highlighting the creative process, drawing upon records held by the charity. Findings: Autism Cymru initiated the concept and played a crucial role in steering the development of government policy for autism in Wales between 2001 and 2011. The charity also drove forward the initiative, which led to the establishment of the Wales Autism Research Centre at Cardiff University in 2010. This paper demonstrates that with astute philanthropic support, small learning disability/autism charities can elicit structural and sustainable change at the national level, leading to wide-ranging benefits for the communities they represent. Originality/value: The strategic approach taken over 20 years ago in Wales by Autism Cymru, which led to the Welsh Government's ASD Strategic Action Plan for Wales (Welsh Government, 2011), set in place a national policy model, which was then followed by The Scottish Strategy for Autism and the Northern Ireland Autism Strategy (Department of Health, 2013>; Scottish Government, 2011). The insightful and tenacious method used by Autism Cymru remains relevant today, demonstrating that any small charity supported by shrewd philanthropic funding can punch well above its weight by taking a planned, ambitious and strategic approach to policy, research and practice. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to provide a commentary response to "Stakeholder experiences of deprescribing psychotropic medicines for challenging behaviour in people with intellectual disabilities". Design/methodology/approach: The commentary provides some evidence-based perspectives on the risks and challenges of psychiatric drug-withdrawal, emphasising the importance of the patient experience in deprescribing decisions. It also makes the case for clinical clarity and carer-engagement in optimising deprescribing outcomes for individuals. Some clinical reflections are provided. Findings: Whilst efforts to reduce the overmedication of people with learning disabilities are welcomed, there is lacking evidence around this population's experience of adverse effects from psychiatric deprescribing decisions, including differentiating between withdrawal and relapse effects. Clinical clarity and carer engagement are key to safe and effective prescribing, although in reality, this can be challenging. Originality/value: This paper will be of value to all professionals with a role in the effective deprescribing of psychiatric medications with and/or for people with intellectual disability. It provides perspectives on aspects of stakeholder experience that warrant further consideration and research. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to expand upon some of the issues raised in "An evaluation of a speech and language therapy eating, drinking and swallowing service for adults with intellectual disability" (Crocker et al., 2024). Design/methodology/approach: This commentary outlines considerations for multidisciplinary team working and professional roles both within and beyond the community learning disability team. It discusses models of service delivery and competency frameworks relating to eating, drinking and swallowing services. Findings: Services should be integrated, include a broad multidisciplinary team and aim to increase competency in all contexts supporting people with eating, drinking and swallowing needs. Outcomes of service provision need to be measured outside of individualised care. Originality/value: This paper broadens the discussion of quality of eating, drinking and swallowing services beyond speech and language therapy and considers a whole systems approach. [ABSTRACT FROM AUTHOR]

Purpose: This commentary discusses the paper by Reardon et al. (2024; this issue) entitled, "Overcoming implementation challenges through using a train-the-trainer approach to teach numeracy in a special school setting." This commentary outlines the necessary contribution this paper adds to the substantive area of research it is couched within while also identifying potential areas of future research to expand the understanding of this phenomenon and its impact upon practice. Design/methodology/approach: What is fidelity of implementation, how do we measure it and how does it impact our interpretations of experimental findings? This commentary focuses specifically on the nebulous construct of fidelity in experimental studies and how this impacts experimental findings' internal and external validity. Findings: Although fidelity is frequently referenced as an important aspect to consider, the measurement of the construct has been critiqued in experimental studies. To understand if an intervention was "implemented as intended," the core dimensions of the intervention must be considered in the measurement process, as well as potential confounding variables. Originality/value: With an increased need for experimental work to inform what works, for whom and under what conditions, there becomes a need to better investigate the implementation of the intervention in these contexts – thus, fidelity must be reconceptualized. This commentary provides an overview of this dilemma with potential ideas to investigate moving forward. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to endorse and elaborate on the recommendations put forward by the Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), emphasising their significance in the field of developmental disabilities. Design/methodology/approach: This paper outlines a specific point of view. The first section focuses on integrating developmental theory and advanced technology in interventions for developmental disabilities. Subsequently, the commentary explores virtual reality (VR) and generative artificial intelligence (AI) for enhancing social skills and personalising support. Finally, the piece highlights innovations like SocialWise VR and Custom Generative Pre-Trained Transformers in aligning interventions with developmental stages. Findings: Technologies like VR and generative AI hold vast potential to revolutionise how clinicians provide timely and relevant knowledge to individuals with developmental disabilities. Research limitations/implications: This is strictly a commentary. Practical implications: Availability of technology. Social implications: Both VR and generative AI will impact service delivery in a meaningful way. Originality/value: The paper advocates for incorporating these technologies into SF-DDARIN's approach, emphasising their potential to revolutionise evidence-based interventions in developmental disabilities. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to serve as a commentary on the paper titled "Implementation of an Adapted Handwriting Without Tears® Programme for Children with Developmental Disabilities in a Special Education Setting." Design/methodology/approach: It provides an overview of educational strategies that can be used in school settings to support professionals in acquiring skills relevant to their practice and promoting the acquisition of new abilities for their students. Findings: It explores three critical aspects of education: measuring academic progress, using evidence-based methods and enhancing educator training. Originality/value: This work represents the personal perspective of a professional working in the service delivery field for children with developmental disabilities in schools and rehabilitative centres. [ABSTRACT FROM AUTHOR]

Purpose: With a historic lack of attention to synthesis methods such as systematic review and meta-analysis and a lack of randomised controlled trials, the evidence base for behavioural interventions for children and adults who are autistic or are diagnosed with developmental disabilities is patchy. The Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN), a network of like-minded researchers and practitioners across the UK, aims to address this. The purpose of this paper is to describe the network's work and provide the context for the remaining articles in the special issue that exemplify network projects. Design/methodology/approach: In this case study paper, the authors describe how the SF-DDARIN works and is resourced, detailing the process used to maximise research opportunities by facilitating network members working together. The authors outline the progressive research steps that the SF-DDARIN has identified are needed to develop and improve the evidence base for behavioural interventions systematically and, with examples, describe how the network delivers these steps. Findings: Since its establishment in 2016, the SF-DDARIN network members have collectively worked on more than 53 projects involving over 50 researchers, had over 120 special schools contribute to projects and have recruited over 500 participants. This has been achieved through funding from the Sharland Foundation, primarily to cover the staffing costs of a small support team and internship partnerships with external organisations. Some projects have attracted external funding. Originality/value: SF-DDARIN may provide an innovative, effective and resource-efficient model for other groups seeking to develop and extend their evidence base in developmental disability research. [ABSTRACT FROM AUTHOR]

Purpose – The purpose of this paper is to apply critical legal analysis to laws, policies and reforms focused on special educational needs (SEN) and equality in England and to suggest a Neurodiversity spectrum statement. Design/methodology/approach – The paper reviews current legal and policy initiatives in SEN, together with recent reforms in equality law. Findings – While past and current policies may have laudable aims, tensions such as a lack of integration of education, health and social services have had prejudicial outcomes for children with SEN, their families/carers, and the professionals involved. Originality/value – Legal reforms promise to remedy some problems, but must be underpinned by adequate resourcing, appeal procedures, and remedies which foster the enforcement of legal duties. Some resources for families with children with SEN are noted. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on Griffin et al.'s paper, "Positive family connections: Co-producing a virtual group programme for family carers of children with learning disabilities or who are autistic". Design/methodology/approach: This is a commentary on co-production, drawing on Griffin et al.'s paper and the values base of the field. Findings: Co-production is a valuable approach which seeks to empower and include key people in research. As suggested by Griffin et al., disseminating learning about co-production is an important additional principle of co-production, which demonstrates a values-based commitment to co-production. Originality/value: This commentary is aimed at professionals and researchers working in the field of learning disabilities who are keen to learn about and do co-production. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to outline the process of developing a new co-produced virtual group support programme called Positive Family Connections (PFC) aimed at family carers of children with a learning disability, or who are autistic, aged between 8 and 13 years. Design/methodology/approach: Development process: family carers were recruited to develop PFC prior to a feasibility randomised controlled trial being conducted (not reported in this paper). The programme was positively oriented and family systems-focused. PFC was developed by family carers, along with the research team, and designed to be delivered by family carer facilitators. The development process included several meetings to design the format and content of the programme. An initial pilot was then delivered and further amendments made to the programme in response to the pilot participants' feedback. Findings: The programme: the co-produced PFC programme involved attending six weekly sessions on Zoom; each 2-h session focused on different themes (e.g. communication and activities). Research limitations/implications: Reflections on the co-production process: key ingredients of co-production included ensuring clarity on roles, positive communication and understanding of the family carers' situation and utilising the varied skills family carers can bring to research and practise. Originality/value: This is the first family systems-focused programme that the authors know of, that has been co-produced with family carers and solely delivered virtually by trained family carer facilitators from the outset. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to examine the prevalence and reasons for delayed discharge from two regional assessment and treatment units (ATUs) for people with learning disabilities, in line with the transforming care agenda. Design/methodology/approach: This is a retrospective evaluation of 44 admissions and discharges from two ATUs from February 2019 to March 2022. Findings: Of 44 admissions who were discharged during the included period, 20 experienced delays in their discharge. Delayed discharges occurred despite the two ATUs meeting standards for length of assessment and treatment as specified by the Learning Disability Professional Senate. The most prevalent reasons for discharge delays were identification of a new placement, recruitment of care staff and building work. Originality/value: This paper offers an in-depth evaluation of recent delayed discharges from two regional ATUs, highlighting the most common reasons for delays and offering suggestion for reducing delays in future. [ABSTRACT FROM AUTHOR]

Purpose: Evidence-informed decision-making is considered best practice when choosing interventions in applied settings across health, social care and education. Developing that evidence base, however, is not straightforward. The pupose of this paper is to describe the process implemented by the Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network (SF-DDARIN) that systematically develops an evidence base for behaviorally based interventions. Design/methodology/approach: In this case study, the progressive research steps undertaken by the SF-DDARIN to develop the evidence base for an online reading intervention, the Headsprout® Early Reading programme (HER®), which uses behavioural principles to promote learning to read, are described. Findings: A series of discrete projects targeting gaps in the evidence base for HER® led to funding two randomised controlled trials in England, one in education and one in health and social care. Originality/value: This case study illustrates an original, creative and effective way of collaborating across academic research departments and applied settings to extend the evidence base for a chosen intervention systematically. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to offer a commentary on Denne et al.'s (2024) article discussing the journey undertaken by the Sharland Foundation Developmental Disabilities Applied Behavioural Research and Impact Network to augment evidence surrounding the efficacy of the online Headsprout® Early Reading programme. Design/methodology/approach: Drawing from over 15 years of professional experience as a qualified teacher in special education settings, the author reflects on the network's approach and its alignment with their own expertise. Findings: While acknowledging the commendable focus of the network on amassing additional evidence, this commentary underscores the importance of identifying barriers and fostering adaptability within the educational landscape. Central to the discussion is the imperative to prioritise students' needs and tailor data collection methods to suit their unique contexts. Originality/value: This commentary is aimed at professionals working in special education settings striving to improve their practice and student outcomes. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to consider the key themes highlighted by Collins et al., in light of the wider research evidence base on informal sources of support for families of children with intellectual and developmental disabilities. Design/methodology/approach: This commentary reflects on the provision of informal support services for families of children with intellectual and developmental disabilities. Findings: The wider literature highlights the key role of family support in shifting negative narratives concerning parenting a child with intellectual and developmental disabilities, the impact of austerity and COVID-19 on support provision and the importance of services working effectively in collaboration to promote self-determination for families and individuals with intellectual and developmental disabilities. Originality/value: Continued efforts to explore how services and informal social supports might work together in an effective manner are key to improving the quality of life of parents caring for children with intellectual and developmental disabilities. [ABSTRACT FROM AUTHOR]

Purpose: This commentary explores the challenges and themes enumerated by the associated article "Why am I still in hospital? Evaluation of delayed discharges from two learning disability assessment and treatment units in England". This commentary broadens and outlines the research's background, premise and potential impact. This paper aims to critically examine the evidence on this subject. Design/methodology/approach: This commentary considers the attitudes to inpatient care for people with learning disabilities in the past decade and outlines a possible compact for the future. Findings: Contrary to popular and emotive beliefs that using specialist inpatient psychiatric settings for people with learning disabilities is universally a poor practice, there are defined occasions when such settings are needed and imperative in the clinical pathway. If people with learning disabilities can access inpatient settings at the right time for the right reason, psychiatric outcomes could be improved. Timely discharge is imperative and currently lacking due to a lack of suitable engagement mechanisms between inpatient settings and the community. Thus, evidence-based outcome tools are essential to facilitate appropriate discharge. Originality/value: There is an ongoing debate on the value and utility of specialist inpatient psychiatric units for people with learning disabilities. This commentary provides a balanced, evidence-based insight into this discussion. [ABSTRACT FROM AUTHOR]

Purpose: Rehabilitation facilities available for persons with intellectual disabilities are low in India. The purpose of this paper is to illustrate an action research programme undertaken in Thrissur district, Kerala, India, to provide institution-based vocational training to selected beneficiaries of BUDS rehabilitation institutions. Design/methodology/approach: A total of 40 students were selected for the training programme. Different vocational activities were included according to criteria such as the abilities of students, sustainability and therapeutic value. Findings: The results of data analysis showed that fraternity, engagement and collectivism were the themes that emerged from the conversations with students, teachers and parents. Some students showed marked improvements in various areas of functioning. Research limitations/implications: Larger replication studies could provide more evidence for wider implementation. Practical implications: There is a possibility of scaling up the model at the state or national level. Social implications: This model could be adopted for providing better services to persons with intellectual disabilities in similar low- and middle-income settings. Originality/value: To the best of the author's knowledge, this paper is the first known attempt at examining the utility of vocational activity training as therapeutic intervention for persons with intellectual disabilities in India. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on "Status quo bias and resistance to positive behaviour support: implications for leaders" and to extend the conversation regarding potential change agents to address resistance. Design/methodology/approach: This commentary provides discussion stimulated by the Ntinas's (2022) paper regarding resistance to the implementation of positive behaviour support (PBS). Findings: Contextual fit is highlighted as a consideration related to the implementation of PBS, with a view to mitigating resistance. A range of factors linked to supporting good contextual fit are discussed. Originality/value: This paper provides the perspective of a PBS practitioner with experience of implementing PBS across a range of settings. Recognition is given that further empirical evidence is required to confirm the utility of contextual fit to address resistance. [ABSTRACT FROM AUTHOR]

Purpose: Research and anecdotal clinical work indicate that complex post-traumatic stress disorder (CPTSD) in families that have children and adults who have a learning disability and/or are autistic may be prevalent. This paper aims to provide a preliminary formulation of complex trauma in families. Design/methodology/approach: This report is based on a review of clinical psychotherapeutic work with six families. The themes are derived from the assessment period through examining the assessment reports and clinical supervision notes for thematic patterns. Findings: This report suggests that the prevalence of CPTSD in families of people who have a learning disability and/or are autistic needs to be researched across the family lifecycle and that there are specific factors that mediate complex trauma symptomatology. Originality/value: CPTSD symptomatology in these families is inadequately conceptualised and this is one of the first papers suggesting this as a potentially helpful framework to consider the experiences of families. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on "Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic" (Jahoda et al.). Design/methodology/approach: This paper considers health and wellbeing for people with intellectual disabilities in the context of public health interventions and public health research. Findings: Consideration is given to the evidence base for self-management, self-help and behavioural change interventions and the need to consider systemic support for promoting the health and wellbeing of people with intellectual disabilities. Originality/value: Guided self-help and self-management techniques have a role in the health promotion of people with intellectual disabilities. Reciprocal sharing between public health researchers and intellectual disability researchers is needed to further the research, policy and service agenda to better promote health and wellbeing for this underserved group. [ABSTRACT FROM AUTHOR]

Purpose: This paper is a commentary which aims to address themes arising from the article by Bunning et al. entitled "Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya". Design/methodology/approach: This commentary provides discussion stimulated by the paper by Bunning et al., including important areas for consideration when developing and evaluating care pathways or solutions to providing support to families of children with disabilities in low- and middle-income countries. Findings: This commentary highlights issues such as: the value of transported and home-grown approaches; the importance of empowerment and advocacy; and the benefits of equitable collaborative partnerships between researchers in low- and middle-income countries and those in high-income countries. Originality/value: This is the personal perspective of two collaborators who have been working in the field of service delivery of complex interventions for children with developmental disabilities in high- and low-income country settings. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group. Design/methodology/approach: The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach. Findings: Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out. Social implications: There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender. Originality/value: There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to provide an overview of the history, current status and future challenges for intellectual disability (ID) policy and practice in Switzerland. Design/methodology/approach: Following a review of the literature, academics in the field of ID in Switzerland reflect on critical issues. Findings: The implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has resulted in the move from institutions to more flexible and individualised, community-based support services. Originality/value: This paper describes a Western-European country facing the challenges of deinstitutionalisation to become an inclusive society due to directions given by the CRPD. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disabilities are not routinely involved in the assessment of their behaviours that challenge, as this is often completed by a proxy respondent and the health-care professional. This is contrary to guidance stating that everyone should be involved in the planning of their care. This paper aims to show how health-care professionals can support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the subsequent development of their own positive behaviour support (PBS) plans. Design/methodology/approach: A non-systematic review of the existing literature on improving the engagement of people with learning disabilities in health-care planning, and specifically PBS planning, was undertaken. Appropriate papers were included in this paper. Findings: There are several evidence-based methods to improve people's engagement in the assessment of their own behaviours that challenge and then the development of their PBS plans. These methods are discussed in terms of their application to supporting people to communicate and involving them in the process of developing a valid and meaningful PBS plan. This is a relatively new focus within the literature, and further research should focus on increasing engagement in the process, as well as monitoring how co-production affects PBS outcomes. Originality/value: This paper summarises some of the approaches used to support people with intellectual disabilities to engage in the assessment of their behaviours that challenge and the development of their own PBS plans. This should encourage health-care professionals to consider how to use alternative and augmentative communication strategies to facilitate co-production in their own clinical practice. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to broaden the discussion on some of the barriers and solutions for co-production in positive behaviour support (PBS) planning as identified in the paper "Including people with intellectual disabilities in the development of their own Positive Behaviour Support Plans". Design/methodology/approach: Drawing on the literature associated with co-production in PBS planning, this commentary will reflect on the wider systems and culture needed to enable successful implementation of this way of working. Findings: Co-production in PBS planning is recommended as part of best practice guidelines. However, there is limited research in the area of co-production with regards to PBS and use of augmentative and alternative communication methods. Collaboration among speech and language therapy and PBS practitioners is an important factor for co-production to achieve the best outcomes for people with learning disabilities who display behaviours of concern. Along with identifying a range of communication tools/strategies needed for PBS assessment/planning, it also requires a whole systems approach and culture shift to ensure the necessary foundations are in place. Originality/value: Co-production in PBS planning remains an under practiced way of working. This commentary builds on the barriers and solutions identified for co-production and provides further insight into what might be needed to achieve this in health and social care settings. [ABSTRACT FROM AUTHOR]

Purpose: Positive behavioural support (PBS) as a framework for delivering quality services is recognised in important policy documents (CQC, 2020; NICE, 2018), yet there is an absence in the literature on how this could be implemented on a large scale. The purpose of this paper is to describe a recent implementation of a workforce strategy to develop PBS across social care and health staff and family carers, within the footprint of a large integrated care system. Design/methodology/approach: A logic model describes how an initial scoping exercise led to the production of a regional workforce strategy based on the PBS Competence Framework (2015). It shows how the creation of a regional steering group was able to coordinate important developmental stages and integrate multiple agencies into a single strategy to implement teaching and education in PBS. It describes the number of people who received teaching and education in PBS and the regional impact of the project in promoting cultural change within services. Findings: This paper demonstrates a proof of concept that it is possible to translate the PBS Competency Framework (2015) into accredited courses. Initial scoping work highlighted the ineffectiveness of traditional training in PBS. Using blended learning and competency-based supervision and assessment, it was possible to create a new way to promote large-scale service developments in PBS supported by the governance of a new organisational structure. This also included family training delivered by family trainers. This builds on the ideas by Denne et al. (2020) that many of the necessary building blocks of implementation already exist within a system. Social implications: A co-ordinated teaching and education strategy in PBS may help a wide range of carers to become more effective in supporting the people they care for. Originality/value: This is the first attempt to describe the implementation of a framework for PBS within a defined geographical location. It describes the collaboration of health and social care planners and a local university to create a suite of courses built around the PBS coalition competency framework. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on "Developing and Refining a Process to Improve Teacher Engagement with the Performance Management System in a School Setting" and to extend the conversation around the use of organisational behavioural management in services. Design/methodology/approach: This commentary focuses on the work conducted by Hawkins et al. (2022) in a school for autistic students who are also diagnosed with a learning disability. Findings: The strengths and limitations of this research study are highlighted, and some suggestions are provided for future research. Originality/value: This paper offers a valuable account of how organisational behavioural management can be used to help educational services produce better outcomes for the students while also empowering teachers. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to describe three dementia assessment services for people with intellectual disabilities to provide professionals with insight into planning this type of service. Design/methodology/approach: Three services in England were contacted via email and telephone to collect data on their service provision. They were asked about the average age of individuals when receiving a baseline assessment, frequency of follow-up assessment, assessment instruments used and descriptive aspects of their services. Findings: All three services offered proactive dementia assessment services to people with Down's syndrome (DS), with one service providing systematic screening via the GP. None offered proactive screening to people with intellectual disabilities who did not have a diagnosis of DS. All offered reactive assessment to this population if they experienced a decline in function. Services differed in terms of age at which baseline assessments were offered, frequency of follow-up and instruments used. Originality/value: To the best of the authors' knowledge, this is the first paper to compare dementia assessment provision between different services in England. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to describe and evaluate the programme of philanthropy arising from the work of the Shirley Foundation, with particular reference to its impact in addressing issues related to autism. Design/methodology/approach: The paper is based on the 2017 evaluation of The Shirley Foundation 1996–2016 by Aperio Group (Europe) Limited entitled 20 Years of Grant Making Autism and Information Technology: An Overview of The Foundation's Impact (Pepin, 2017). The evaluation included interviews with Dame Stephanie Shirley CH (the Foundation's founder), a documentation review and a survey of key grantees. Findings: The evaluation concluded that the funding achieved both grantee purposes and those of The Shirley Foundation. The projects funded generally produced outcomes that made a difference and grant-making and monitoring processes were regarded, on the whole, as efficient. Originality/value: The evaluation demonstrates the value of an innovative, catalytic, social entrepreneurial approach to funding to achieve impact. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on Banks et al. and sets the wider context. Design/methodology/approach: It provides a brief narrative review of the literature on the factors that determine the quality of life of people with intellectual disabilities, including the impact of culture. Findings: Key to ensuring good quality of life outcomes is support that is facilitative, enabling and empowering which can compensate for severity of disability and improve people's experiences. This approach is called Active Support. Improving quality of life is a key part of preventing and responding to behaviours that challenge. Culture is an important factor in ensuring staff are motivated to work in such ways but is likely to be intertwined with many other factors. Originality/value: This paper summarises the key literature on what is needed to improve outcomes for people with intellectual disabilities. It introduces the importance of exploring how the different dimensions of culture interact and how culture, practice, processes and structures might work in a much more complex and intertwined fashion than previously conceptualised. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to focus on why some practitioners in learning disability services resist implementing evidence-based approaches, such as positive behaviour support, despite its benefits. Design/methodology/approach: Status quo bias theory was used to explain why practitioners choose existing practices over evidence-based approaches despite the negative consequences to their well-being. Findings: Staff members' decision to maintain the status quo should not be based solely on a cost–benefit analysis, as is commonly believed, as several factors influence it. Originality/value: This lies on the development of leadership action based on the factors that influence staff's decision making in favour of the status quo. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on Pytlowana and Stenfert Kroese's article on the experiences of professionals working with parents with learning disabilities by exploring challenges and good practice in this area. Design/methodology/approach: Key areas of practice were identified for further exploration by drawing on research studies with parents with learning disabilities. Findings: While there is growing evidence of good practice around working with parents with learning disabilities, a number of challenges around communication and relationship-based practice remain. The paper recommends further training and education for those working in this complex area of practice. Originality/value: The paper adds value by bringing together evidence from across a number of studies to highlight good practice. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on the article by Rachel Forrester-Jones on the experiences of older carers of people with learning disabilities. Design/methodology/approach: The commentary reflects on the themes identified in the original article, comparing its findings to the lived experiences of those taking part in older carers' projects in Oxfordshire, England. Findings: Similar broad themes were identified in both samples. Given these findings, the extent to which matters have changed, since the Valuing People work on older carers is considered. Originality/value: The paper discusses policy and practice implications to improve the quality of life of older carers and their families and explores how the voice of older carers can be strengthened to enable them to shape practice and policy. [ABSTRACT FROM AUTHOR]

Purpose: It has been recommended that social, health and other relevant professionals work collaboratively to support parents with learning disabilities (LD) and their children. A number of qualitative studies have investigated the experiences of professionals who work with parents with LD. A synthesis of these experiences has not as yet been produced, and therefore, the purpose of this paper is to review how professionals experience working with parents with LD to inform practice guidelines on how parents with LD can be supported most effectively. Design/methodology/approach: A systematic search took place using five databases and 15 peer-reviewed papers were identified based on the relevant inclusion and exclusion criteria. The quality of each included paper was systematically evaluated. Meta-ethnography was used to synthesise the qualitative data from the identified studies. Findings: The synthesis offered six themes: concerns about knowledge and experience, the importance of and difficulties with available support, the importance of and challenges with liaison with and between professionals, differences in power, conflicting priorities – parents or children?, the personal impact on professionals. Originality/value: The results are discussed in the context of previous research. Recommendations for future research and practice innovation are made. [ABSTRACT FROM AUTHOR]

Purpose: This collaborative paper (working together) describes collaborative practice development and research by and with people from the learning disabilities community. This paper aims to show some of the activities which supported the collaborative practice development and research to show and encourage others to do more collaboration. The paper format is based on a previous collaborative paper published in the Tizard Learning Disability Review (Chapman et al., 2013). Design/methodology/approach: The collaborative practice development and feasibility study [1] focuses on an intervention called Keep Safe. This is an intervention for young people with learning disabilities who are 12 years and older and have shown "out-of-control" or harmful sexual behaviour. Findings: The paper gives examples of activities of the Keep Safe Advisory Group in planning, doing and thinking about Keep Safe development and feasibility. The authors list some good things and some difficulties in collaborating. They look at which parts of Frankena et al.'s (2019a) Consensus Statement on how to do inclusive research were done, which ones were not, and why. Social implications: The paper ends with some thoughts about collaborating with people from the learning disabilities community: for people with learning disabilities, practitioners and researchers. Originality/value: The paper is original in its illustration of collaborative practice development and research and measuring the activities against the inclusive research consensus statement. [ABSTRACT FROM AUTHOR]

Purpose: This paper is a commentary inspired by Laura McKenzie-Smith's review paper. Design/methodology/approach: This commentary provides a personal perspective on the intersections of narrative practice and the support of people with a learning disability. Findings: This commentary highlights some further possibilities of narrative ideas beyond therapy. This paper explores examples of record keeping and research as sites for story construction about lives and identities. Research limitations/implications: This is a personal perspective of a systemic psychotherapist and academic working with people with a learning disability. Practical implications: This paper argues that the stories we tell ourselves and others about our work and the people we support are powerful in ways of which we may not always be aware. Social implications: In common with person-centred planning, narrative ideas highlight the power of the stories circulating about a person and their network and the implications they may have for their lives and identities. Originality/value: This commentary explores narrative practices beyond the context of therapy, highlighting organisational, administrative and research practices as story-constructing activities that co-create identities of persons with a learning disability, their networks of support and health and social care professionals. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to discuss the importance of offering high-quality support focussed on developing the skills of individuals with intellectual and developmental disabilities. Design/methodology/approach: The analysis will be based on the study published by Cohen and McGill (2020), who demonstrated that video modelling led to improvements in support workers' performance when training adults with intellectual and developmental disabilities to brush their teeth. Findings: Developing the skills of staff members and services users should be one of our primary aims. Evidence-based practices grounded in behaviour analysis can help produce optimal outcomes that will improve the quality of service provision and, subsequently, the service users' quality of life. Originality/value: This paper is aimed at parents and professionals working in the field of disabilities who are keen to further improve the service provision of people with disabilities. [ABSTRACT FROM AUTHOR]

Purpose: Without effective support and intervention, young people with learning disabilities and severe challenging behaviour are at risk of placement in out-of-area residential settings or highly specialist child and adolescent mental health service (CAMHS) units. Such placements may be inappropriate and result in significant reductions to the quality of life of young people and their families. This paper aims to evaluate the effectiveness of the Bradford positive behaviour support (PBS) service model in terms of its aims to improve quality of life, develop skills and maintain children living with their families in their own homes. Design/methodology/approach: A service evaluation using quantitative and qualitative data from a range of sources to review the effectiveness of the PBS model being applied in Bradford and Calderdale was the methodology used. Findings: When consistently implemented, the Bradford positive behaviour support–in reach service may improve quality of life, facilitate skill development in young people and their carers and reduce placements in residential and CAMHS inpatient units. Avoidance of such placements is likely to reduce the overall costs of service commissioning in Bradford. Originality/value: This paper evaluates a novel approach being applied by a third sector agency to implement effective PBS with a small group of children, their families and networks. There is scope for this model to be successfully implemented in other areas. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to outline the experiences of children with special educational needs and disabilities (SEND) and their families during the coronavirus pandemic. Design/methodology/approach: This paper draws on research gathered and collated by three different organisations working with families of children and young people with SEND. Findings: There were a number of common findings across all three surveys. In particular: the rapid collapse of external support for children and families; the reduction/withdrawal of support exacerbated the stress and exhaustion already experienced by many families; it proved very difficult to establish home learning and get adequate support from schools; there was little government recognition of families' vulnerability and need for support; and, paradoxically, a significant minority of children and families reported increased well-being. Originality/value: Findings carry clear implications both for the provision of child and family support during any further lockdowns and, more generally, in respect of government policy and funding of family support. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to consider the needs of children and young people with intellectual disabilities (ID), autism and challenging behaviour including those with mental health difficulties in the light of the article "A reflective evaluation of the Bradford Positive Behaviour Support – In Reach Service". Design/methodology/approach: The author's reflections on experiences of working with this cohort as a clinician and manager are presented in this paper. Also, this paper presents the following: consideration of recent policy, guidance and literature associated with the provision of support to children and young people with ID or autism at risk of residential placement or hospital admission; reflection on gaps in research and practice in how to best support this group of children, young people and families with complex and diverse needs. Findings: The success of the Bradford and other similar services is discussed along with a reflection about the benefits and potential gaps in Positive Behavioural Support services working to meet the needs of this group of children and young people, and their families. Originality/value: The importance of areas providing more consistent and high quality multi-agency early preventative support and intensive support for those in crisis is discussed. The need for further research and development of ways of working with this cohort, including harder to reach young people and families, is discussed. [ABSTRACT FROM AUTHOR]

Purpose: Narrative therapy has been suggested as particularly relevant to people with intellectual disability (ID), with group formats potentially offering additional benefits. This paper aims to critically review studies which evaluated narrative group interventions for people with ID. Design/methodology/approach: The seven papers identified for review were critically appraised for their quality using a quality appraisal tool appropriate to their design, along with additional factors including adaptations made to improve accessibility. Findings: The studies suggest that there may be some small benefits of narrative group therapy for those with ID. However, alongside issues limiting the studies' evaluations, it is noted that the research paradigms used in the studies conflict with narrative approaches. Research limitations/implications: The limited evidence base suggests the need for further research. The randomised controlled trial would ordinarily be seen as the gold standard for such research. However, narrative interventions may require a different approach to evaluation. Originality/value: This is the first review of published literature on the evaluation of narrative therapy groups for people with ID. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this commentary is to explore some of the research on family carers of people who have a learning disability and/or are autistic. Design/methodology/approach: The approach is a narrative commentary. Findings: Family carers of people who have a learning disability and/or are autistic may have needs related to mental health and well-being; however, formal systems of support and resources are limited. Originality/value: The commentary explores and integrates perspectives from international research findings to provide a context/background of broader literature in which the paper by Blackman et al., is situated. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to discuss the importance of delivering high-quality education to allied health and fitness professionals around physical activity for people with intellectual disabilities. Design/methodology/approach: The clinical training and experience needs of allied health and fitness professionals are examined in relation to knowledge and skills around physical activity levels and people with intellectual disabilities. Findings: The training of allied health and fitness professionals may not be adequate. Current training does not appear to provide professionals with the skill set and suitable experiences to appropriately support people with intellectual disabilities to be active. Originality/value: Key training areas for allied health and fitness professionals are outlined. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to provide a commentary on the article by Chadd et al. The commentary sets out the key principles of good support and considers how the Royal College of Speech and Language Therapists research priorities impact on the practice of a team of Speech and Language Therapists who support people with learning disabilities, including autistic people and those with complex needs who display behaviour described as challenging. The commentary considers how the research priorities fit within current policies and frameworks and reflects on areas that could be considered further. Design/methodology/approach: This commentary provides a narrative account of the reflections of a team of Speech and Language Therapists on the impact that the research priorities have had on their work. Findings: The Speech and Language Therapy (SLT) team are all keen to be involved in research but identify barriers to this relating to time within their current roles and challenges in meaningfully involving people they support. The research priorities have provided a broad framework for them to use to consider areas for research, and the focus on measuring outcomes is welcome. The research priorities largely fit within the frameworks that support current social care practice; however, they are not written in a way that is accessible for most people with a learning disability, and some do not fully reflect the social model of disability. The wider involvement of people with lived experience may have led to different research priorities identified. Originality/value: The commentary provides an account of the impact that the research priorities have had on a team of Speech and Language Therapists working within a social care setting. It encourages readers to consider the wider context for people with learning disabilities and the role SLT plays within the social model of support for improving quality of life. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to explore three main areas in relation to the interface between challenging behaviour and offending. Design/methodology/approach: The first aim is to explore the labelling of behaviours as challenging or offending behaviour in the light of legal definitions, staff knowledge and beliefs and the mental capacity and mental health acts. The second is to explore challenging behaviour as a risk factor for offending in people with Intellectual Disability (ID).The third aim is to discuss the challenging behaviour as a barrier to discharge from secure services. Findings: There is limited research suggesting that challenging behaviour such as physical aggression can lead to longer stay in forensic services, and this warrants further research. Originality/value: This paper aims to promote discussion about the interface of offending and challenging behaviour in people with IDs and to promote best practice. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to provide a commentary on papers in this special edition concerning the implementation of evidence-based practice from a clinician's perspective. Design/methodology/approach: The commentary makes a number of points drawing on both recent literature and the author's own experience working as a clinician with children and adults with learning disabilities including those who are autistic whose behaviours can challenge themselves, their parents, carers and support networks. Findings: Effective implementation requires clinical expertise to operate within a context of collaboration and partnership working, where co-production with those who have lived experience ensures that what clinicians offer resonates and contributes to improvements in quality of life for all. Originality/value: The paper will be of value to clinicians working alongside children and adults with learning disabilities and their families, particularly clinical psychologists and behaviour specialists, and to other stakeholders wanting to enable and facilitate the development of high-quality support. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to consider the extent to which academic research, as described by the papers in this journal, has helped the large-scale use of positive behaviour support (PBS) with people with learning disabilities whose behaviour may be challenging. Design/methodology/approach: The author explores the issue from the perspective of a social care provider seeking to implement PBS successfully across the organisation's services. Findings: The author concludes that research needs to refocus its efforts if it is to make a real contribution and argues that future emphasis should be on implementation. Originality/value: This commentary articulates the concerns and experiences of a service provider that has striven to implement effective, evidence-based support, informed by relevant research, for many years. Such a perspective is rarely heard in academic PBS research literature. [ABSTRACT FROM AUTHOR]

Purpose: Care pathways are being increasingly used in the national health service to outline an anticipated programme of care in relation to a particular illness, condition or set of symptoms. The purpose of this paper is to inform those using the service of what they might expect within what time frame. They are designed to reduce variation in practice and allow optimal quality of care across a variety of care settings. Care pathways map out a patient's journey, providing coordination of services for users. They aim to have: "the right people, doing the right things, in the right order, at the right time, in the right place, with the right outcome". Design/methodology/approach: This paper outlines care pathways in relation to people with intellectual disabilities who present with behaviour that challenges. Findings: It is likely that many people will have a lifelong need for support, so discharge from clinical services should only be considered if it is genuinely appropriate. Reductions in a person's behaviours that challenge are likely to be a consequence of changes that have been made to the person's environment and supports. Therefore, any reductions in the level or type of support that the person receives may lead to an escalation of the behaviour again. Originality/value: Standards in relation to care pathways are presented. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this paper is to describe the current situation in relation to restrictive interventions, and some actions that could be taken to reduce them. The quality of care provided by inpatient services for people with intellectual disabilities has come under increasing scrutiny in recent years – from Winterbourne View in 2011 to Whorlton Hall in 2019, there has been increasing concern that admission to hospital does not always result in a good outcome for the patients. For some people, it has resulted in further deterioration in their physical and mental health, separation from families and supports and reduced probability of living as part of their community. This is in spite of knowledge and evidence of what good practice looks like. Design/methodology/approach: This paper examines the extent to which inpatient services deliver good practice in treatment and care and, where this is not happening, the extent to which they are subject to effective governance. Findings: People admitted to inpatient services can be at risk of poor-quality care and the overuse of restrictive interventions. There is guidance available that addresses what should be in place for them to receive high-quality care and treatment, and this clearly is available to many people. However, others can find themselves placed in increasingly restrictive environments and in circumstances where their human rights are at risk of being breached. There is increasing evidence that these services do not follow good practice guidance in terms of staff skills, development and implementation of effective care plans and governance arrangements that address these issues. Regulators, commissioners and managers could, and should, focus on these issues to ensure that the most vulnerable receive the care and treatment they need while in hospital. Originality/value: Service providers are aware of the difficulties in developing alternative community services. This places even more importance on the need to ensure that care and treatment in hospital is of a good standard, and that the use of restrictive interventions is minimised. McGill et al. (this issue) describe the features of a capable environment and it may be that hospitals consider that the requirements are unlikely to be implemented effectively in a ward/unit setting. However, a shift of focus in doing this could result in a reduction in restrictive interventions and a better experience – potentially for both the staff and the patients. And families could have some reassurance that their relative was receiving the best quality care and treatment, and that their human rights were being upheld. [ABSTRACT FROM AUTHOR]

Purpose: There is an apparent disconnect between the understanding of best practice and service delivery in the support of people with learning disabilities at risk of behaviours that challenge. We suggest, is a problem of implementation. The purpose of this paper is to explore reasons why this might be the case: a failure to recognise the collective works of successive generations of research and practice; and a failure to address the macro-systems involved and systems changes needed to support implementation. Design/methodology/approach: This paper reviews the consensus that exists in respect of best practice. Drawing upon ideas from implementation science the paper highlights the complexities involved in the implementation of all evidence-based practices and uses this as a framework to propose ways in which an infrastructure that facilitates the delivery of services in the learning disabilities field might be built. Findings: This paper highlights core recommended practices that have been consistent over time and across sources and identifies the systems involved in the implementation process. This paper demonstrates that many of the necessary building blocks of implementation already exist and suggests areas that are yet to be addressed. Critically, the paper highlights the importance of, and the part that all systems need to play in the process. Originality/value: In the absence of any generalised implementation frameworks of evidence-based practice in the learning disabilities field, the paper suggests that the findings may provide the basis for understanding how the gap that exists between best practice and service delivery in the support of people with a learning disability at risk of behaviours that challenge might be closed. [ABSTRACT FROM AUTHOR]