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Purpose The purpose of this paper is to provide a commentary on “Making the world a better place: achieving impact through innovation and an entrepreneurial ethos” written by John Pepin. Design/methodology/approach The commentary considers the broader role of philanthropy especially with respect to learning disability and autism. Findings The work of the Shirley Foundation is a good example of the contribution that can be made by philanthropy. Although philanthropy has many critics, it remains one way in which significant change can by supported. Originality/value Partnerships between philanthropic and government funding may help both to address some of the concerns raised about philanthropy and maximise the potential for beneficial impacts.

Deliberate firesetting behaviour is an ongoing international problem, which has devastating consequences for victims and wider society. Adults with IDD who engage in firesetting have received little attention from researchers and practicing professionals, and this is particularly notable when the literature about firesetting is compared to other types of offending behaviour. The purpose of this thesis was to expand our knowledge and understanding of firesetting by adults with IDD across four separate but related studies. \ud The aim of Study 1 was to systematically examine and synthesise existing research to determine what was known about adults with IDD who set fires. The specific aims were to identify the prevalence of adults with IDD who set fires, highlight their characteristics and treatment needs, highlight offence related characteristics associated with deliberate firesetting, and evaluate assessment tools and interventions available to professionals working with this population. Several databases were searched for relevant articles, including PsychINFO, PsychARTICLES, Medline, CINAHL Plus with Full Text, Criminal Justice Abstracts, SCOPUS, Open Grey, and the University of Kent arson library. The methodological quality of studies was assessed using the Mixed Methods Appraisal Tool (Hong et al., 2018). Systematic searches of the literature resulted in 100 articles that met the specific inclusion criteria. Findings indicated that adults with IDD shared some characteristics with other adults who set fires (e.g., aggression, impulsivity). They also faced additional challenges, which may have implications for treatment and risk formulation (e.g., communication difficulties, lack of support). However, research was generally of poor methodological quality, limiting our ability to fully understand the characteristics and treatment needs of this population.\ud The aims of Study 2 were to validate Barnoux et al. (2015) and Tyler et al. (2014) micro-level theories of adult firesetting with a sample of adults with IDD who have set fires, and offer a preliminary unified descriptive model of the offence chain for adults with IDD who set fires. Thirteen adults with IDD in England were interviewed about the affective, cognitive, behavioural, and contextual factors leading up to and surrounding a recorded firesetting incident. Offence account interviews were analysed using a Grounded Theory approach. The resulting model consisted of four main phases: (1) background, (2) early adulthood, (3) pre-offence period, and (4) offence, and post offence period. The model accounted for prominent precursors to firesetting within this population including mental health deterioration, poor problem solving, and new motivations for firesetting. Unlike other offence chain theories, the Firesetting Offence Chain for Adults with IDD highlighted the significance of post offence behaviour and cognitions (e.g., an attempt to extinguish the fire). \ud The aims of Study 3 were to evaluate the accessibility of scales that appraised fire-related factors likely to be associated with firesetting behaviour for adults with IDD, and to develop an accessible self-report scale of fire-related factors likely to be associated with firesetting behaviour. Qualitative and quantitative data from three rounds of a Delphi exercise with practitioners and a focus group with adults with IDD were used to generate consensus about the accessibility of item adaptations made to the Fire Interest Rating Scale (Murphy & Clare, 1996), Fire Attitudes Scale (Muckley, 1997), and the Identification with Fire Questionnaire (Gannon et al., 2011). Findings suggested the accessibility of current measures could be improved to better meet the needs of adults with IDD, and adaptations to all questionnaire items were needed. Following feedback, revisions to current measures were implemented leading to the development of the Adapted Firesetting Assessment Scale for adults with IDD. \ud The aims of Study 4 were to investigate the reliability, validity, comprehensibility, relevance, and comprehensiveness of the Adapted Firesetting Assessment Scale when used with adults with IDD. Fifty-nine adults with IDD, some of whom had a history of firesetting completed the Adapted Firesetting Assessment Scale (AFAS) on two occasions. Feedback about the questionnaire was sought from both participants and professionals. The AFAS had acceptable internal consistency and good test-retest reliability. The attitudes towards fire, fire normalisation, poor fire safety subscales, and total scores discriminated firesetters from non-firesetters. Content analysis of feedback indicated the AFAS was easy to understand, relevant, accessible, and comprehensible. Findings offered some preliminary evidence to support the use of the AFAS with adults with IDD who have a history of firesetting. \ud The following conclusions were drawn from the combined findings. While there is evidence of a lack of research in this area relative to those without IDD, adults with IDD who set fires present with some prominent factors including circumscribed interests in fire or emergency services, negative social environments (including negative caregiver experiences and negative educational experiences), fire-related vulnerabilities (e.g., serious fire interest), or other vulnerabilities (such as other comorbidities, communication difficulties, and social exclusion). Adults with IDD also present with prominent motivations for setting a fire, including being motivated by a desire to express emotion, cause change, or illicit support from others. In addition, their cognitive and affective responses to starting a fire suggested adults with IDD had difficulties in understanding the consequences of their behaviour. From the findings, it can be concluded that the Adapted Firesetting Assessment Scale contributed towards the evidence base pertaining to the assessment of adults with IDD. Preliminary evidence suggested the Adapted Firesetting Assessment Scale was accessible, comprehensive, relevant, and reliable, and is likely a useful resource for future researchers and clinicians.

Background: Community services for Swedish people with intellectual disability (ID) are intended to support self-determination and integrity. Legislation does not allow the use of restrictive or coercive measures. Aim: The aim of this study is to identify the extent of, rationale for, and strategies staff believe would reduce the use of restrictive measures in group homes and daily activities services for people with ID. Method: A survey was sent to all staff in group homes and daily activities in one large Swedish municipality. The survey comprised four Likert style questions and one free text question, addressing the type of and reasons for restrictive measures, and how much staff value their replacement. A total of 250 surveys were completed. Results: A third of staff reported that some restrictive measures were used daily or weekly, primarily to protect and support service users. Adequate numbers of staff, better service design, and training were considered necessary for change. Conclusion: Staff report structural reasons, such as staffing, resources time, lack of training, and supervision for using restrictive measures. Staff see reducing the use of restrictive measures as requiring structural changes with engagement from the whole organization.

Background: Wider communication about death and dying for those with intellectual disabilities has been highlighted as being of key importance.\ud \ud Objective: To gain the perspective of paid carers based in residential homes about meaningfully supporting individuals with intellectual disabilities in the bereavement process.\ud \ud Methods: Semi-structured interviews were conducted with paid carers working across two residential homes.\ud \ud Results: Four themes were identified: (a) challenges in having conversations about death and dying; (b) meaningful involvement of residents in the bereavement process; (c) the relationship between paid carers and residents (including the impact of a resident's death on paid carers); and (d) the support needs of paid carers.\ud \ud Conclusions: The recommendations from previous research of meaningfully involving people with intellectual disabilities in the bereavement process have not filtered fully into practice. Paid carers still highlight the need for specialist support and advice to help them discuss and increase involvement in death and dying.

This chapter takes a sociological and auto/biographical approach to describe and explain the very beginnings of a challenging research process. Yet substantively this chapter discusses and reflects upon missing data and at its core, silencing the silenced. Here missing data equates to the socio-political death of marginalised and oppressed people. That is, marginalised and oppressed people, (e.g. prisoners and their families, intellectually and physically disabled people, those on the autism spectrum, people with mental health conditions), are silenced due to researchers having limited access to them, a disabling condition, participant scepticism about ‘powerful’ others, personal biographical trauma and institutional practices, such as governing and punitive research excellence frameworks, restrictive ethical procedures and a disdain for creative methods. Essentially people go missing, ‘communities’ and groups die a slow socio-political death and institutions such as legal structures and procedures, schools and universities stay alive, albeit like machines all producing ‘cheerful’ robots. I propose however, via a sociological imagination, we enable ‘speaking’ auto/biographically, draw out creativity and utilise literature, the Arts and comedy, then perhaps we might rouse resistance and socio-political living for oppressed and marginalised people, and sociologists and criminologists committed to social justice (Mills, 1959).

© 2019, © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. 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 everyday service delivery, and as part of frontline 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.

Background This study 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. Methods 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 recognized.

In the context of offenders who have learning difficulties, autism, and/or social, emotional, and mental health problems, their families, and professionals who work with them, caring and ethical research processes can be explored via fieldnotes. Conducting life story interviews and recording fieldnotes within qualitative criminological, education, and sociological research have long since been used to document and analyze communities and institutions and the private and public spheres. They richly tell us about specific research contexts, or everyday lives and relationships, that interview transcripts alone perhaps overlook. It is in the process of recording and reflecting upon research relationships that we can see and understand care-full research. But caring and ethical research works in an interdependent and relational way. Therefore, the participant and the researcher are at times vulnerable, and recognition of this is critical in considering meaningful and healthy research practices. However, the acknowledgment of the fact that particular types of research can be messy, chaotic, and emotional is necessary in understanding caring research.

BACKGROUND: Domestic violence against women is well researched in the general population, but much less so in relation to women with learning disabilities. This qualitative research study interviewed 15 women with learning disabilities who had experienced domestic violence about their experiences, the impact of the violence on them and their children, their coping strategies and help seeking behaviour. MATERIALS AND METHODS: Semistructured in-depth interviews were conducted. Data were analysed using Inter-pretive Phenomenological Analysis. A service user advisory group helped at particular stages, notably at the formative stage and with dissemination, especially the production of accessible materials, including a DVD. RESULTS: The violence experienced by many of the women was severe and frequent. It impacted negatively on their physical and psychological well-being. The women's awareness of refuges and others sources of help was generally low. CONCLUSIONS: Healthcare and social care professionals have a clear remit to help women with learning disabilities to avoid and escape violent relationships. Language: en

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care‐related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non‐care‐related factors to identify relationships that could inform social care policy and practice. Cross‐sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self‐rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT‐QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support.

\ud Although claims for the efficacy of puppetry in therapeutic contexts lack extensive academic research, some published evidence does exist. A phenomenological and embodied approach is used here beginning with the writer’s own experience as a mother to theorize on the puppet’s role as a surrogate communicator and facilitator with children who lack communication skills. Instead of foregrounding language difficulties (as is often the case in writings on autism), this article focuses on the physical reality of a puppet. The writer explores notions of embodiment where neurological patterns are established through physical interaction with the world, and suggests ways in which this patterning may be interrupted or disturbed, and how puppets, as safe and to some extent controllable physical objects, may act therapeutically to re-establish some of these patterns. It is further suggested that puppets may work in similar ways to Winnicott’s ‘transitional objects’ in babyhood, operating in a ‘transitional space’. Winnicott claims that in a psychologically healthy adult, the comfort of infantile transitional objects and phenomena is transferred to religion, art and creativity – activities that provide a bridge between the inner world that we totally control and the external world, which we do not. Such activities are linked to a creative ‘space’ of mind and are psychologically necessary. Puppets operate in this space. Overall, stress is laid on the importance of the material reality of the puppet and its ‘objectness’ to help explain its particular efficacy.

Background: Perceived problems around the use of Physical Intervention to manage challenging behaviour have led to UK initiatives to encourage policy development and accredited training. However, information on PI use and the impact of these initiatives remains limited. \ud \ud Method:Adult residential services within an English region were sent a questionnaire regarding physical intervention use, policy, staff training and monitoring/management.\ud \ud Results:Physical intervention use was reported by 47% of the services. Of services using physical intervention, 65% reported having a policy governing its use and 79% reported providing staff training. Where restrictive physical intervention was used, comparable figures were 82% for policy and 84% for training. Physical intervention use was reported to be monitored in some way by 94% of services. Opinions offered supported the reduction of physical intervention use. \ud \ud Conclusions: Physical intervention use is widespread. National guidance on policy and training is widely followed though unimplemented by a minority. The time may be right to more explicitly aim for a reduction in PI use within services.

Background: The use of physical intervention (PI) with people with intellectual disabilities continues to cause concern. This study sought to clarify the frequency and circumstances of PI use and gather data on the characteristics of individuals subject to PI.\ud \ud Method:Data on individuals subject to PI were gathered by postal questionnaire completed by service providers from three samples: people who (a) had attended a PI conference and/or purchased a PI policy document; (b) operated in a specific geographical area of England and (c) operated specialist assessment and treatment settings for children/adults with intellectual disabilities throughout the UK.\ud \ud Results: Frequent PI use was reported. Restraint was most commonly reported - monthly or more frequently with most individuals. Overall, those receiving PI were more likely to be young, male, not legally restricted and identified as having an autistic spectrum disorder than those who did not receive PI.\ud \ud Conclusions: The relatively frequent use of PI is consistent with routine rather than last resort use. Such use carries risk of physical and psychological damage. Service providers should systematically reduce the frequency of use of PI.

Background: Media representation of people with intellectual disabilities may contribute to general perceptions held about them and reflect changes in policy and service provision. \ud \ud Materials and Methods: Articles from The Guardian newspaper in 2001 were analysed and compared to a previous analysis of material published in 1983.\ud \ud Results: There was much more coverage of people with autism or Down syndrome than expected from their actual frequency in the British population of people with intellectual disabilities. Newspaper reports continued to be about children more often than expected when about autism or Down syndrome, but not when about people with other intellectual disabilities. Medically-related representations were less than in the past but juxtaposition with other client groups continued. More “people-first” terminology was now used except in respect of people with autism. Articles systematically under-represented complexity and severity of need.\ud \ud Conclusions: Policy and service changes may have contributed to the decline of medically- and child-related representations within non-specific intellectual disabilities. The continued over-representation of children in articles about autism and Down syndrome, and the generally increased reference to people with those syndromes, suggests growing differentiation within the population of people with intellectual disabilities. The focus on people with less severe or complex disabilities echoes criticisms of Valuing People.

Background: Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs.\ud This study sought to identify characteristics of the highest cost placements in the South-East of England. \ud \ud Method: Lead learning disability commissioners in the South-East of England were asked to provide information about the ?ve highest cost residential placements that they commissioned for adults with learning disabilities.\ud \ud Results: The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and ? or autism spectrum disorder. Most placements were in out-of-area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour. \ud \ud Conclusions Young, male adults with learning disability, challenging behaviour and ? or autism continue to receive very high cost residential support, often in out-of-area residential care. There remains limited evidence of plans to redirect resources to more local service developments.

Fragile X syndrome (FXS) and Smith-Magenis syndrome (SMS) are associated with a number of specific topographies of problem behavior. Very few studies have examined the function served by problem behavior in these groups. Using the Questions About Behavioral Function scale Matson and Vollmer (User’s guide: questions about behavioral function (QABF). Scientific Publishers Inc., Baton Rouge, LA, 1995) the current study examined group differences in the function of problem behavior displayed by children with FXS and SMS, in comparison to a control group of children with non-specific intellectual and developmental disabilities. Between-group analyses showed children with SMS were more likely to display problem behavior related to physical discomfort. Both within- and between-group analyses showed children with FXS were less likely to display attention-maintained problem behavior. These findings hold implications for the assessment, treatment and prevention of problem behavior associated with both FXS and SMS.

Fragile X syndrome is the most common inherited cause of intellectual and developmental disability. The influence of environmental variables on behaviors associated with the syndrome has received only scant attention. The current study explored the function served by problem behavior in fragile X syndrome by using experimental functional analysis methodology with 8 children with fragile X. No child met criteria for attention-maintained problem behavior, 5 children met criteria for escape-maintained problem behavior, and 4 children met criteria for tangible-maintained problem behavior. Results are discussed and compared with previous findings on the function of problem behavior in fragile X syndrome, and implications for intervention are discussed. It is noted that the external validity of these findings is limited by the small sample size.

This article reports on support that people with learning disabilities who self‐injure say they have found, or would find, helpful in relation to their self‐injury. It is an important issue, because most interventions and approaches are based on past patterns of support or what professionals think is helpful or appropriate. Rarely has the voice of the person concerned been heard. The clear message from people with learning disabilities, including those who use little or no verbal communication, is that they want opportunities to communicate their feelings and to be listened to. Being open to listening and developing one's own communication skills is essential for supporters of people with learning disabilities who self‐injure.

The challenges of providing appropriate reproductive healthcare to women with intellectual disabilities are set within the context of a primary health care system. The rationale for this study was to explore the prescribing practices and attitudes of General Practitioner’s (GP) when women with intellectual disabilities come to them for contraception. The data reported in this paper come from a cross-sectional postal questionnaire survey conducted with 162 GPs across two counties in England. The majority of respondents had 10 or fewer women with intellectual disabilities of child bearing age on their caseloads. The most commonly prescribed methods of contraception were the Pill (39.7%) and depot medroxyprogesterone acetate (DMPA), (34.2%). The difficulties faced by GPs in determining ‘best interests’ are explored, as are the issues related to the women’s capacity to consent to sex.

The pre-session is an antecedent intervention strategy that is used to evaluate the impact of motivating operations (MO) on problem behavior. The present paper reviews those empirical studies that have used this strategy to address problem behavior displayed by people with intellectual disabilities at school-age. A systematic literature review was conducted between years 2000 and 2010. A total of 12 published articles representing 24 participants were examined. The studies have been analyzed according to the characteristics of the participants, research design, context, problem behavior, behavioral function, type of the MO, pre-session and results. Findings from this review suggest that a pre-session condition usually has a clear effect on problem behavior. The practical implications of this findings and potential issues for future research are discussed.

It is argued that an approach characterised by either genetic or environmental determinism fails to adequately describe the contingencies involved in the evocation and maintenance of challenging behaviors in children with intellectual and developmental disabilities. Instead, challenging behavior should be considered as a result of the interaction of genetic and environmental variables. This argument is illustrated through a conceptual model for the development of challenging behaviour and recently gathered data on differences in the functions of challenging behavior in children with different genetic syndromes. The findings are further discussed in the context of a developmental systems model, in which neither the influence of genetic nor environmental contributions can be fully understood without taking account of the other. This expanded model may hold important implications for the understanding of challenging behavior.

Motivating operations (MOs) exert a powerful influence over operant relations and hold significant implications for those working in applied settings. In this paper, we describe the concept of the MO and provide “real world” examples. Particular emphasis is given to the concept of the conditioned MO (CMO). Implications for intervention are discussed. It is hoped that this endeavour will encourage the utilization of the full conceptual system of the MO.

Background: Many family carers find the support they receive in respect of their child’s challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful.\ud \ud Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis.\ud \ud Results: Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals, and issues with respite provision. Concerns were also expressed about challenging behaviour specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child’s exclusion from services. \ud \ud Conclusions: More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support.

Purpose of the reviewThe purpose of this review was (i) to find and summarise all the available research evidence on the quality and costs of dispersed community-based housing when compared with clustered housing, (ii) to assess the strength of the research and identify gaps in the evidence and (iii) to interpret the research to outline the benefits and drawbacks of each model.Studies reviewedThis review found 19 papers based on 10 studies presenting data comparing dispersed housing with some kind of clustered housing (village communities, residential campuses or clusters of houses). This is a sizeable body of research reporting the experience of nearly 2,500 people from four different countries. The studies covered all eight domains of quality of life, providing information on about 80 different aspects of these domains. Five studies included data on different aspects of service design and operation and three presented comparative costs. Almost all of the studies used quantitative methods with robust approaches to measurement. All studies focused on people with intellectual disabilities.ResultsDispersed housing has been found to be superior to clustered settings in at least some aspects of every outcomes than dispersed housing for people with intellectual disabilities. In terms of the quality of life domains of social inclusion, material well-being, self-determination, personal development and rights there are no studies reporting benefits of clustered settings. In the physical well-being domain, clustered settings have been found to be superior in hours of recreational activity, contact with dentists, psychiatrists and psychologists, some health screening, some aspects of safety, contact with family and friends, visitors to the home and satisfaction with relationships.However, in many of these cases the better results refer only to village communities and not to campus housing or clustered housing. These serve a minority of the less disabled population and they depend on a supply of people willing to live communally with disabled residents. They are therefore an important part of the spectrum of service provision but they are only ever likely to occupy a niche in the market for care. They are unlikely to be a feasible option across the board for disabled people.In terms of costs, the commonest finding is that clustered housing is less expensive than dispersed housing. However, this cost difference appears to be due to differences in staffing levels – i.e. fewer staff are provided to support people in clustered housing than in dispersed housing. In two of the three studies which examined costs controlling for this variable there was no statistically significant difference – in one case between specialised campus and specialised dispersed housing and in the other between samples matched for client characteristics.ConclusionThere is much less evidence comparing clustered settings with dispersed housing than comparing other congregate care settings (such as institutions) with dispersed housing. The results should therefore be treated with caution. They do, however, present a broadly consistent picture.

Background This study gathered information about perceptions of family carers of children and young people with developmental disabilities and challenging behaviour of the help, support and treatment received from services and professionals. Methods A total of 66 family carers completed postal questionnaires on the nature of, and their satisfaction with, services, professional help and advice received in respect of their family member's challenging behaviour. Results Most carers were dissatisfied with support and services received. Almost half reported receiving no professional input or none that was helpful. Over two-thirds reported receiving respite care but, in a third of these, the child had been excluded because of challenging behaviour. Conclusions Families of children with challenging behaviour often do not receive services and supports that they find helpful. Treatments provided are not always evidence based. The ‘rationing’ of services creates a danger of inequality of access. We need a more proactive approach to identifying and meeting the need for family support.

This paper provides a summary of a piece of research that looks at the development of policies and practices in risk assessment and management in community services for adults with learning disabilities. The research was funded through the Foundation for People with Learning Disabilities and was carried out by Andy Alaszewski, Helen Alaszewski and Alison Parker.

This presentation provides an overview of the history of long-stay institutions for people with intellectual disabilities in Hungary. It discusses reform attempts to change institutions and why these failed. It also reflects on the role of disabled people’s organisations and self-advocates in promoting change.