Search

Background: Mental health policies outline the need for codesign of services and quality improvement in partnership with service users and staff (and sometimes carers), and yet, evidence of systematic implementation and the impacts on healthcare outcomes is limited. Objective: The aim of this study was to test whether an adapted mental health experience codesign intervention to improve recovery‐orientation of services led to greater psychosocial recovery outcomes for service users. Design: A stepped wedge cluster randomized‐controlled trial was conducted. Setting and Participants: Four Mental Health Community Support Services providers, 287 people living with severe mental illnesses, 61 carers and 120 staff were recruited across Victoria, Australia. Main Outcome Measures: The 24‐item Revised Recovery Assessment Scale (RAS‐R) measured individual psychosocial recovery. Results: A total of 841 observations were completed with 287 service users. The intention‐to‐treat analysis found RAS‐R scores to be similar between the intervention (mean = 84.7, SD= 15.6) and control (mean = 86.5, SD= 15.3) phases; the adjusted estimated difference in the mean RAS‐R score was −1.70 (95% confidence interval: −3.81 to 0.40; p =.11). Discussion: This first trial of an adapted mental health experience codesign intervention for psychosocial recovery outcomes found no difference between the intervention and control arms. Conclusions: More attention to the conditions that are required for eight essential mechanisms of change to support codesign processes and implementation is needed. Patient and Public Involvement: The State consumer (Victorian Mental Illness Awareness Council) and carer peak bodies (Tandem representing mental health carers) codeveloped the intervention. The adapted intervention was facilitated by coinvestigators with lived‐experiences who were coauthors for the trial and process evaluation protocols, the engagement model and explanatory model of change for the trial. [ABSTRACT FROM AUTHOR]

The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing support understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and wellbeing of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth's recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these connected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an international context characterised by personalisation of support, resource constraints and inquiries into poor practice. Relationships are key to good quality support. We wanted to know whether and how paid support relationships between young people with cognitive disability and support workers in Australia contribute to feeling valued, respected and cared about. Young people felt valued when the worker noticed what they did and found ways to help them achieve what they wanted to do. They felt respected when they could make decisions about choices and control over their lives. They felt cared about when they felt personal warmth, they were listened to, they felt their views mattered and they trusted each other. When young people felt harmed, they felt it deeply. The worker often did not intend to cause harm with their words or actions. The careless harm sometimes was from unequal power in the relationship. The inequality sometimes took away the voice of the young person. Sometimes the support worker also felt like their voice could not be heard. The research is important because how we feel about being with another person is key to how we know who we are. It develops the self-esteem, self-respect and self-confidence of the young person and the support worker. Knowing this matters for improving the quality of personal support. [ABSTRACT FROM AUTHOR]

Background: This paper provides an evidence base for practice in Australia from an integrative literature review of research on co-designing housing with people with an intellectual disability. The study asks: what methods and outcomes have been reported from including people with an intellectual disability in the co-design of their housing? Method: The integrative review framework described by Whitemore and Knafl (2005) was used to analyse the literature. Results: The literature searches yielded 16 articles after applying inclusion and exclusion criteria. Important gaps in the literature were found relating to: co-designing with people with an intellectual disability; the co-designing of housing with people with an intellectual disability; specific frameworks or benchmarks for co-designing with people with an intellectual disability; processes on use of proxies; and on design outcomes. Conclusions: Considerable work is required to explore and evaluate co-design processes in the design of housing with adults with intellectual disabilities, as well as how the outcomes of these processes are evaluated. [ABSTRACT FROM AUTHOR]

People with an intellectual disability experience a protective regime when it comes to their sexuality. Families, carers, services and others mediate their experiences and act as gatekeepers through policies and practices that focus on the regulation and management of sexuality. Sex education has traditionally been 'for' people with intellectual disabilities provided 'by' health professionals, teachers and other professions who position themselves as experts with the power to shape the sex education, information and learning opportunities that people with an intellectual disability access. This paper presents an alternative programme developed in collaboration with people with intellectual disabilities, which uses the stories of people with an intellectual disability and is facilitated by people with intellectual disabilities as peer educators. Crip theory rejects approaches to understanding the disability experience that privilege particular characteristics of disability experience over others including cognition. This paper argues this idea can offer a 'way in' for people with intellectual disabilities to research, debate and progress sexual rights within the current sexual rights vacuum in international law and policy. The paper demonstrates how an Australian peer education programme provides a liberating sex education for those involved through a focus on rights and use of peer education. [ABSTRACT FROM AUTHOR]

Background While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. Materials and methods Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. Results Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. Conclusions Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. Accessible Abstract This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences., Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard., Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen., Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished. [ABSTRACT FROM AUTHOR]

Introduction: People with intellectual disability (ID) face barriers to accessing mental healthcare. Individuals who have had significant experience in intellectual disability mental health (IDMH) can provide insights into strategies to overcome these barriers. Methods: This historical investigation applied an interpretive descriptive approach using semi-structured interviews with fourteen IDMH experts. Thematic analysis was undertaken to explore the delivery of mental health services to people with ID since the 1960s. These themes were then analyzed to identify key lessons about delivering quality mental healthcare. Results: Key lessons suggest the need for: specialized IDMH services, clear policy and governance, including people with ID in the design and delivery of services, holistic and collaborative services, an equipped workforce, quality assessment and treatment, and ongoing research. Conclusions: A historical review of mental health services for people with the ID provided valuable insights into strategies that could be implemented to enhance mental healthcare for this important group. [ABSTRACT FROM AUTHOR]

Background: Nurses provide technical and relational skills that are integral to the care of people with intellectual disability (ID) in Australia. However, little is known about the demographic profile of this section of the nursing workforce. Method: Administration of a survey to nurses whose primary role it is to care for people with ID nationwide Results: This brief report provides a description of the demographics of participants in the national survey. Of 101 participants, 78% were women and the mean age was 53.21 years. Participants held a variety of educational qualifications to prepare them for the care of people with ID. Conclusion: The findings suggest the need to consider the future unmet needs of people with ID given the ageing of this workforce. The ongoing support needs of people with ID depend upon the ongoing presence of nurses well prepared to meet the need of this group of people. [ABSTRACT FROM AUTHOR]

Background: Employment is recognised as facilitating the personal and clinical recovery of people with psychosocial disability. Yet this group continue to experience considerable barriers to work, and, constitute a significant proportion of individuals engaged with Disability Employment Services (DES). Recognition of the role of recovery-oriented practice within DES remains limited, despite these approaches being widely promoted as best-practice within the field of mental health.Methods: The Improving Disability Employment Study (IDES) aims to gather evidence on factors influencing employment outcomes for Australians with disability. Descriptive analysis and linear regression of IDES survey data from 369 DES participants, alongside narrative analysis of data collected through 56 in-depth interviews with 30 DES participants with psychosocial disability, allowed us to explore factors influencing mental health, well-being and personal recovery within the context of DES.Results: Psychosocial disability was reported as the main disability by 48% of IDES respondents. These individuals had significantly lower scores on measures of mental health and well-being (44.9, 48.4 respectively, p ≤ 0.01), compared with respondents with other disability types (52.2, 54.3 p ≤ 0.01). Within this group, individuals currently employed had higher mental health and well-being scores than those not employed (47.5 vs 36.9, 55.5 vs 45.4 respectively, p ≤ 0.01). Building on these findings, our qualitative analysis identified five personal recovery narratives: 1) Recovery in spite of DES; 2) DES as a key actor in recovery; 3) DES playing a supporting role in fluctuating journeys of recovery; 4) Recovery undermined by DES; and, 5) Just surviving regardless of DES. Narratives were strongly influenced by participants' mental health and employment status, alongside the relationship with their DES worker, and, participants' perspectives on the effectiveness of services provided.Conclusion: These findings re-iterate the importance of work in supporting the mental health and well-being of people with psychosocial disability. Alongside access to secure and meaningful work, personal recovery was facilitated within the context of DES when frontline workers utilised approaches that align with recovery-orientated practices. However, these approaches were not consistently applied. Given the number of people with psychosocial disability moving through DES, encouraging greater consideration of recovery-oriented practice within DES and investment in building the capacity of frontline staff to utilise such practice is warranted. [ABSTRACT FROM AUTHOR]

This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school‐aged children with disability. It examined the relationships between disability‐related services, parent occupations, and FQOL. Two mixed‐methods studies with 122 participants and 24 in‐depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school‐aged children with disability. The quantitative aspect (N = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two‐way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school‐aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long‐term well‐being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family‐centered care and supportive practitioners assist FQOL and are highly recommended. [ABSTRACT FROM AUTHOR]

To validate a version of the Motives for Physical Activity Measure (MPAM) adapted for youth with intellectual disabilities (ID). A sample of 359 youth with mild to moderate ID from Australia and Canada respectively completed English and French versions of the MPAM-ID. Exploratory structural equation models supported the validity and reliability of the five-factor structure of the MPAM-ID, as well as the weak, latent variance-covariance, and latent mean invariance across linguistic versions. Additional results supported the partial strong and strict invariance of most MPAM-ID items across linguistic versions. The results also supported the complete measurement invariance of the MPAM-ID over time and revealed a lack of differential item functioning (DIF) as a function of youth's age, body-mass index (BMI), ID level, and frequency of sport involvement (FSI). However, partial DIF was found as a function of youth's sex. Additionally, latent mean differences in MPAM-ID's factors were found as a function of youth's ID level, sex, and FSI. Finally, results supported the convergent validity of the MPAM-ID factors with a measure of perceived physical abilities. The MPAM-ID can be used among English- and French-speaking youth with ID irrespective of their age, BMI, ID level, sex, and FSI. We propose English and French adaptations of the Motives for Physical Activity Measure for Youth with Intellectual Disabilities (MPAM-ID). The MPAM-ID was able to identify the same motives as the original measure. The MPAM-ID will facilitate the assessment of motives for physical Activity in cross-sectional and longitudinal studies. The MPAM-ID will facilitate the assessment of motives for physical Activity among English- and French-speaking youth with ID. The MPAM-ID could be used to compare youth motives for physical Activity as a function of their age, body-mass index, ID level, and frequency of sport involvement. [ABSTRACT FROM AUTHOR]

Students with disabilities continue to experience barriers to accessing tertiary (i.e., postsecondary) education in Australia. Using the principles of Universal Design for Learning (UDL) may help educators proactively address barriers through the design of more accessible and inclusive educational experiences. However, at present, references to UDL appear in only a small number of Australian educational policies and tertiary institute websites, and few tertiary educators use UDL in practice. In this article, we describe how a team of educators, learning designers, accessibility advocates, and people with disabilities from multiple institutions across Australia collaborated to co-create a free, accessible eLearning program to build workforce knowledge and skill in UDL. We first describe how the advisory group was established, how the Knowledge to Action cycle was used to guide the activities of the advisory group, and the evaluation framework that was used to assess the outcomes of the eLearning program. We share potential future activities to raise awareness of UDL and influence policy and practice in local contexts and propose directions for future work in this area. [ABSTRACT FROM AUTHOR]

This study proposes a revision (R) of the Center for Epidemiologic Studies Depression Scale for youth with ID (CESD-ID) in English and French. 346 youth (36.02% girls) with mild (51.26%) and moderate (48.78%) ID (11–22 years; M = 15.69), enrolled in secondary schools in Canada (French-speaking; n = 115), and Australia (English-speaking; n = 231), as well as their parents and teachers, participated in this study. Results support the reliability, factor validity, equivalence (sex, ID level, comorbidities, and country), and convergent validity (with youth-, parent-, and teacher-rated measures of depression, anxiety, and loneliness/social isolation) of the CESD-ID-R. The CESD-ID-R allows youth with ID to provide a reliable and valid assessment of their depressive mood and happiness suitable for epidemiological studies. [ABSTRACT FROM AUTHOR]

Aim: To describe Australian registered nurses' awareness, and implementation of reasonable adjustments within their practice when caring for people with intellectual disability and/or autism. Additionally, the association between key demographic, workforce, and respondent variables and familiarity of the term and regularity of use was explored. Design Cross‐sectional survey. Methods: Survey data were collected between August and October 2020 using an online survey tool. Data were analysed using descriptive and inferential statistics. Results: Familiarity of the concept of reasonable adjustments was relatively low, compared to respondents who report applying adjustments when caring for people with intellectual disability and/or autism. Higher levels of confidence, comfort, and knowledge when caring for this cohort were associated with greater awareness and application of reasonable adjustments. Conclusion: A higher volume, and diversity in type of, nursing education related to care for people with intellectual disability and/or autism is indicated. [ABSTRACT FROM AUTHOR]

Background: Employment rates for Australians with an intellectual disability remain low. Effective evidence-based strategies are required to guide future interventions, to enable people with intellectual disability achieve better employment outcomes. Methods: A literature search of peer-reviewed articles published between 2001 and 2015 was conducted using four electronic databases. Articles were reviewed and sorted according to employment setting and type of support provided. Results: Twenty-two studies were identified. Four studies of open employment examined workplace level strategies and 17 investigated individual level strategies. A single study of supported employment examined individual level change. Results suggested potential strategies that can be utilised to support people with intellectual disability obtain and maintain employment. Conclusions: Existing evidence regarding open employment for people with intellectual disabilities could be enhanced through the conduct of rigorous outcomes-focused studies that attend to specific strategies at both individual and organisation levels. [ABSTRACT FROM AUTHOR]

Some service providers use restraints and seclusion with people with an intellectual disability, and policies that permit such practices usually state that their use is primarily to prevent the risk of self-injury or risk to others. However, the use and effectiveness of restrictive practices have been questioned due to the negative impact on the service user and staff and may also be considered a contravention of the human rights of the service user. Consequently, policies are now trending toward limiting restraint use or on the prevention of or safe elimination of the use of restraint. In Ireland, new legislation has attempted to formalize the definitions of restraint and seclusion, as well as place restrictions on such practices. However, issues have been raised with respect to the implementation of the new policies, particularly in operationalizing a definition of restraint and applying it to widely heterogeneous clinical groups considering the autonomy that service providers have in devising their own service-level policies. The authors use legislation from Ireland and Victoria, Australia, to illustrate restraint practices and the issues emanating from its use. The authors argue that a gap remains between our understanding of the place of implementing restrictive practices with respect to service provision and their actual applications by providers. They conclude that such discordance between policy and practice needs to be addressed by stronger regulation. [ABSTRACT FROM AUTHOR]

Background: Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners' perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. Methods: Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. Results: Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. Conclusions: Due to negative perceptions of a person with PIMD's decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability. [ABSTRACT FROM AUTHOR]

Background: While there has been a strong national and international emphasis on social inclusion over the past 15 years, many people with intellectual disabilities remain socially isolated in their communities. Mobile technology has the potential to support social inclusion and there is great interest among adults with intellectual disabilities in using technologies such as computers, smartphones, tablets and the internet. This study aimed to investigate the use of mobile technology by people with intellectual disabilities, and its capacity to improve their social inclusion. Methods: Data were collected using individual interview, group interviews or interviews using Photovoice with 32 adults with intellectual disabilities and analysed using inductive content analysis. Findings: Findings indicated that adults with intellectual disabilities use various mobile technology and apps for multiple purposes, including social activities, work, support, productivity, navigation and entertainment. Enabling inclusion, increasing convenience and accessibility were viewed as advantages of mobile technology, while disadvantages were related to social issues and dangers resulting from the use of mobile technology and the practical limitations and ubiquitous nature of mobile technology. Barriers to using mobile technology included having limited access to the technology itself in certain contexts and difficulties with its use. Receiving support from others and awareness of safety measures enabled the use of mobile technology among the participants. To facilitate the use of mobile technology among people with intellectual disabilities, there needs to be greater education about this and other technologies including their features, design and apps. Importantly, people with intellectual disabilities need to be involved in the design of apps. Conclusions: To fully harness the potential of using mobile technology for the purpose of developing social relationships and sense of belonging in the community, people with intellectual disabilities should be supported in developing an awareness of the limitations of mobile technology and practicing appropriate safety measures. Accessible summary: Many people with intellectual disabilities are lonely in their communities. Mobile technology can help people to feel connected.32 people with intellectual disabilities from News South Wales, Australia, took part in interviews, focus groups and taking photos.People use mobile technology and apps for social activities, work and entertainment. People said mobile technology and apps help with inclusion, accessibility and making things easier. Disadvantages of using mobile technology include unsafe online contacts and no Wi‐Fi connections.People should take risks when using mobile technology if it does more good than harm. We found out about barriers to using mobile technology, some people do not have access to it. Mobile technology equipment and apps should be developed together with people with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Attitudes in Australia toward people with intellectual disabilities were investigated among students, disability services professionals, and the general population. Three previously validated questionnaires and a measure of respondent self-reported "social desirability" were used. Students and disability services professionals exhibited similar attitudes, with both groups reporting significantly more positive attitudes than members of the general population. More positive attitudes were evident among younger people, people with higher educational attainment, and individuals with a prior knowledge of or regular contact with people with intellectual disabilities. These respondents were less likely to support the principles of eugenics and more likely to support the paradigm of community inclusion. The authors make recommendations concerning the development of policies and strategies to foster the acceptance and inclusion of adults with intellectual disabilities in the wider community. Further studies that include the use of qualitative techniques and target people in the general population are recommended. [ABSTRACT FROM AUTHOR]

Context: Access to healthcare for rural Australians is a wicked problem, particularly for rural people with disability. Contemporary healthcare access frameworks in Australia tend to overlook geography, use a 'one‐size‐fits‐all approach', and disregard the valuable relationships between key rural healthcare stakeholders, including rural people with disability, rural health services and health professionals. The United Nation's Convention on the Rights of Persons with Disabilities requires the Australian Government to engage people with disability in the design of policies that will shape their day‐to‐day lives, including their access to healthcare. However, the nature and extent to which rural people with disability, rural health professionals and other key rural stakeholders are involved in the design of Australian policies impacting the health of rural people with disability are unknown. Aim: This paper examines approaches taken to engage rural people with disability and health professionals in the design of Australian disability policy impacting healthcare access, and reimagines future processes which can improve healthcare access for rural people with disability. Approach: Co‐design and ethics of care lenses are applied to policy design approaches in this paper. We approach this work as rural disability and health academics, rural health professionals, and as rural people with disability, neurodivergence and family members of people with disability. Conclusion: We argue future co‐designed policy approaches could focus on driving change towards equity in healthcare access for rural people with disability by harnessing the relational nature of rural healthcare. [ABSTRACT FROM AUTHOR]

Inconsistent and inadequate pain assessment practices in cerebral palsy (CP) have resulted from a lack of standardisation of pain assessment, limited use of appropriate tools and failure to integrate disability and biopsychosocial models. To assist with improving consistency, this study aimed to establish consensus from key stakeholders regarding domains considered essential for measuring chronic pain in children and young people with CP. A modified electronic Delphi study was conducted on 83 stakeholders, including clinicians, researchers, people with CP and parents of children with CP. Participants rated 18 domains sourced from existing literature as either "core", "recommended", "exploratory" or "not required". After two rounds of surveys, 12 domains were considered core: pain location, pain frequency, pain intensity, changeable factors, impact on emotional wellbeing, impact on participation, pain communication, influence on quality of life, physical impacts, sleep, pain duration and pain expression. These domains reflect the complexity of pain in a heterogeneous population where medical comorbidities are common and communication and intellectual limitations impact significantly on the ability of many to self-report. The domains will be utilised to build a framework of pain assessment specific to children and young people with CP guided by the biopsychosocial model. Chronic pain is under-identified and poorly assessed in the cerebral palsy (CP) population. The perspectives of clinicians, researchers and consumers are vital for developing a framework for chronic pain assessment in CP. Consensus of key stakeholders found 12 domains considered essential to incorporate into a chronic pain assessment model in CP. [ABSTRACT FROM AUTHOR]

Everyone has the right to employment. Work is important for health, well‐being, and social, economic, and financial inclusion. However, it is often difficult for people with intellectual disability to find and maintain work, especially in the open labour market. Policy challenges remain about who can access open employment (also sometimes called competitive or supported employment) and how often people with intellectual disability do so. Greater understanding about the barriers that people with intellectual disability encounter when they try to find and keep work in open employment is needed. Drawing on research with 51 people with intellectual disability in Australia, this paper examines the systemic barriers they report to finding and maintaining work in open employment. The findings highlight that the barriers they experience stem from narrow, dismissive, and discouraging attitudes to their work in open employment and from a spectrum of experiences of stigma and discrimination in open workplaces. The paper thus provides new knowledge about reasons that people with intellectual disability may either reject or not continue in open employment and take up less inclusive work options. The paper discusses the implications of the findings, including the need for policy development for attitudinal change, designing more varied roles for employees with intellectual disability, ensuring access to industrial relations protections, and increasing and better regulating and funding requirements on support to people with intellectual disability who are seeking work in open employment. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disability do not have adequate access to mental health services and have worse mental health outcomes than the broader community. Access to information about mental health, treatment, and services has been advocated as one strategy to address these inequities. This article presents findings from a policy analysis of how the right to accessible information is represented in Australian mental health policy, with a focus on information access for people with intellectual disability. Method: An analysis of Australian and New South Wales state policies relevant to mental health services 2007–2017, in current use and available online (49 documents) was conducted. Principles in the United Nations Convention on the Rights of Persons with Disability 2006 and an integrated health literacy framework were used to frame a content analysis. NVivo 11 (QSR 2015) was used to search the policy documents and themes were identified according to the policy type and purpose. Findings The right to information is expressed in Australian and New South Wales state policy documents. However, the mental health policies do not refer to the communication needs of people with intellectual disability or incorporate strategies to address their needs. Many of the mental health policy directives incorporate the need for tailored communication. Some documents mention the needs of other groups of people with specific communication needs, but not people with intellectual disability. Implications: The inconsistency between the right to information expressed in policies and processes to communicate information with people who have intellectual disability needs to be addressed. The longstanding disparities in health outcomes, and difficulties accessing mental health service experienced by many people with intellectual disability underline the pressing need for policy to require accessible information practices. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study is to investigate the experiences of staff during the development and implementation of an Australian-first, family-focussed service addressing the mental health needs of young people (aged 12–25 years) with an intellectual disability. This study aims to understand the challenges and successes of the staff team when navigating their way in a new program working with a complex client group. Design/methodology/approach: This study used a thematic analysis on data collected from focus groups at two time points in the implementation phase of the new program. Thematic analysis of the data was conducted to identify important themes relating to the staff's challenges, successes and learning. Findings: The findings showed that there was a lot of adaptation needed for staff members trained in either mental health, or disability, but not both. Another key finding was the importance of working with the young person's family system as well as their existing system of support services. This major focus of the work for staff could be challenging due issues arising in the family unit and a lack of collaboration between services. Working with this complex client group was viewed as challenging and stress inducing; however, the motivation and attitudes of staff were found to be positive factors in the running of the program. Originality/value: This paper makes an original contribution to the field, as it provides a unique look at staff experiences when needing to adapt to a new and challenging workplace that was the first-of-its-kind in Australia. [ABSTRACT FROM AUTHOR]

Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals-turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members. [ABSTRACT FROM AUTHOR]

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice. Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia. Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for. Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study. [ABSTRACT FROM AUTHOR]

Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death. [ABSTRACT FROM AUTHOR]

This article examines trends in the use of accommodation support services for people with intellectual disabilities in Australia. According to the article, observed changes in institutional and community living are mainly driven by "non-institutionalization," that is, people with ongoing support needs remaining in the community, rather than going into institutions. Further, it appears that the institutionalized population is ageing, primarily as a result of younger people with high support needs staying in the community. If the trends continue, they will result in a decreasing number of people with disabilities in institutional accommodation who will also be ageing. The larger group of people in group homes will also be getting older.

As the largest public health crisis within a century, the COVID‐19 pandemic has caused long‐term disruption in the support systems of people with intellectual and developmental disabilities (IDD) across the globe. The purpose of this study was to investigate challenges and ameliorative strategies to supporting the basic care needs of people with IDD 1 year into the pandemic, as experienced by nurses who specialize in IDD nursing. We surveyed a convenience sample of 369 nurses from across North America, Europe, and Australasia using a 52‐item online questionnaire. Descriptive statistics were used to rank the greatest challenges and the degree of support available to nurses, and manifest content analysis was used to analyze open‐ended responses related to ongoing challenges and ameliorative strategies. Results of descriptive analyses revealed consistent findings across global regions in terms of the challenges faced by nurses; the greatest challenges related to supporting or enabling socialization with family/friends, ensuring adequate day programming or educational services, identifying/planning alternative entertainment activities, ensuring adequate staffing of familiar support workers and caregivers, and managing challenging behaviors related to change in daily routine and activities. Nurses described a considerable degree of support offered by their organizations in terms of flexibility in scheduling related to family obligations and paid time off for COVID‐19‐related isolation and quarantine. Content analysis of open‐ended survey responses revealed numerous challenges related to: (1) client socialization, meaningful activity, and mental/behavioral health; (2) interpreting, keeping up with, and helping others to understand COVID‐19 guidelines; (3) access to, quality of, and continuity of care; and (4) COVID‐19 fatigue and the influence of time. Overall, our study highlights ongoing issues with access to care and support, exacerbated by the pandemic, and the importance of having meaningful activity and socialization for overall well‐being of people with IDD during a long‐term public health crisis. [ABSTRACT FROM AUTHOR]

To survey the educational experience of Registered Nurses in Australia, at undergraduate, post graduate and continuing professional development levels. It has been previously demonstrated that nurses feel unprepared to care for people with intellectually disability and/or autism spectrum disorder in mainstream clinical settings. Specific undergraduate pre-registration curricula content in this domain has been identified to be low in volume, and in the absence of any studies to determine it, it has been presumed that it has diminished over time. A cross-sectional survey of Australian Registered Nurses using a descriptive survey tool. The level of education undertaken related to intellectual disability and autism spectrum disorder has been consistently low across time and it predates the move from pre-registration hospital based training to the tertiary sector. A relationship was identified between the experience of education and self-reported preparedness, comfort and knowledge to care for people with intellectual disability and/or autism spectrum disorder. Increased educational preparation for nurses to care for people with intellectual disability and/or autism is indicated. [ABSTRACT FROM AUTHOR]

The concurrent ageing of parental care-givers and people with intellectual disabilities is driving academic and social welfare concern for a post-parental care 'crisis'. The 'crisis' typically pertains to a transition from primary care in the family home precipitated by the death or incapacity of older parents without a pre-planned pathway to post-parental care. This crisis is amplified in rural communities given low service engagement with families and a deficit of disability-supported accommodation and services. Academics, service providers and policy makers have responded through a problematisation of post-parental care planning. This focus continues to normalise informal care, burdens families with responsibility for planning, and diverts attention from structural deficits in the socio-political carescape. This paper attends to the Australian policy landscape in which long-term care-giving for families living with intellectual disability is enmeshed. It contends that the dyadic and didactic model of informal long-term care has profound implications for social service support and post-parental care planning. Problematisation of carers' 'need' to relinquish primary care and for people with intellectual disabilities to transition to independent and supported living is necessary to unsettle the dominant policy and service discourse around the provision of services to sustain informal care-giving. Innovation is then needed to forge pathways of support for families in rural communities planning on continuing, transitioning and transforming care arrangements across the lifespan. [ABSTRACT FROM AUTHOR]

Purpose: Negative nurse attitudes and emotions toward caring for adults with intellectual disability have been implicated as a contributing factor to the cascade of health disparities faced by this population. The purpose of this study was to identify influencing factors of nurses' attitudes and emotions toward caring for adults with intellectual disability that transcend national borders and differing systems of care. Methods: This cross‐sectional correlational predictive replication study used an online electronic survey with a snowball sample of 115 Australian nurses, from March to August 2020. Results: Nurses' attitudes toward adults with intellectual disability were significantly less positive compared to adults without intellectual disability, and nurses' beliefs about the quality of life of adults with intellectual disability predicted nurses' attitudes, replicating findings of the USA study. The frequency of both the professional and personal contact was associated with positive and negative emotions in both countries, however no consistent predictive pattern was evident. Conclusions: Our findings suggest that worldwide, there is room for improvement in nurses' attitudes and emotions toward this underserved group. Future research should investigate the role of nurses' beliefs about quality of life of adults with intellectual disability for potential interventions to improve nurses' attitudes toward care. Clinical relevance: Assisting nurses to identify misconceptions about the quality of life of adults with intellectual disability is suggested as an intervention to improve nurses' attitudes toward caring for adults with intellectual disability. [ABSTRACT FROM AUTHOR]

Purpose: This qualitative research aims to explore staff perspectives on working effectively with people with intellectual disability who are in contact with the criminal justice system. Design/methodology/approach: Taking a case study approach, staff working for a third sector community organisation were interviewed about the components of effective work with their customers. The staff supported people engaged in the Community Justice Program. Findings: Staff consistently described relationship building as the most important part of their work. There were three components to relationship building: the process of relationship building, the elements of a high-quality staff–customer relationship and the staff skills needed to develop a good relationship. Originality/value: This paper makes two contributions to the literature. First, it focuses our attention on a third sector organisation supporting people in contact with the justice system as opposed to a formal criminal justice agency. Second, the paper seeks to understand the processes and skills staff deploy to build a high-quality relationship with criminal justice-involved people with intellectual disability. [ABSTRACT FROM AUTHOR]

Objective: To identify and reach consensus on the priorities and operation of an adult tertiary intellectual disability mental health service in New South Wales, Australia. Method: An online Delphi consultation was conducted with 25 intellectual disability mental health experts. Results: Participants agreed that the service should involve a multidisciplinary team and accept people with an intellectual disability aged over 15 years with complex needs and/or atypical presentations. Agreed service roles included short-term assessment, diagnosis and treatment, providing high-level clinical advice, and capacity building. Endorsed principles and practical ways of working align with existing guidelines. Conclusions: This study describes experts' views on how an adult tertiary intellectual disability mental health service should operate in New South Wales. Further consultation is needed to determine the views of people with an intellectual disability and mental health staff. [ABSTRACT FROM AUTHOR]

Background: Although a 'person‐centred focus' is a legislated objective for both aged‐care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. Methods: Mixed‐methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in‐depth interviews; and survey of health professionals. Results: There is an urgent need to develop inter‐sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well‐being indicators; development and adoption of nationally consistent policies/standards across integrated aged‐ and disability‐care sectors; improved strategies for workforce planning; and upskilling of existing staff including place‐based collaboration. Conclusions: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person‐centred support systems. [ABSTRACT FROM AUTHOR]

Background: Carer mental health literacy and help seeking are areas that are not well researched in the intellectual disability field. This study aimed to explore the above including service utilization experiences of Australian parents with an offspring with an intellectual disability and a comorbid psychiatric disorder. Method: Forty‐one parents took part in an online survey assessing satisfaction and helpfulness ratings of received services. Twenty‐six parents also completed items to assess mental health literacy and attitudinal barriers to help seeking. Results: Parents showed good mental health literacy with depression and with challenging behaviour associated with autism and poorer literacy with mixed presentations. Few attitudinal barriers to help seeking were reported. Parents reported varied helpfulness and satisfaction ratings with disability and mental health services. Conclusions: Parents are capable of recognizing the need to seek professional help for their offspring. Implications for service coordination, provision and carer involvement are discussed. [ABSTRACT FROM AUTHOR]

Background: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. Methods: Data from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. Results: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). Conclusions: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed. [ABSTRACT FROM AUTHOR]

People with an Intellectual Disability (ID) are around 4 times more likely to suffer with a mental health disorder than IQ-typical people, however previous studies have shown they may be less likely to be diagnosed. One suggested cause of this is the diagnostic overshadowing bias: the tendency for practitioners to attribute unusual behaviour, thoughts or feelings to a person's ID and not a separate mental health disorder. In the current study N = 87 participants were randomly assigned 1 of 2 clinical vignettes describing a client who is displaying symptoms of mental health disorder. Vignette 1 described a client with an IQ of 105 who graduated from high school. Vignette 2 described a client with an IQ of 55 who attended special classes throughout school. All other details were identical. Participants then rated the likelihood of 7 diagnoses on a 5-point Likert scale. Contrary to our hypothesis participants were not less likely to diagnose a mental health disorder in people with an ID and this was found to exist across all profession types involved in the study. Although these findings indicate that the diagnostic overshadowing bias may not be present in Australia, several factors including a reported lack of confidence in working with clients with an ID suggest the inclusion of ID specific training may be beneficial. [ABSTRACT FROM AUTHOR]

Parent-carers need support to continue to care for their child with significant disability in their home. There has, however, been little evidence that respite interventions have consistent or enduring beneficial effects on carer well-being. This article reports the findings of a qualitative study which adopted an Appreciative Inquiry philosophy to interview parent-carers of children with significant intellectual and/or developmental disabilities on how formal support services have helped them maintain their health and well-being, and disability support staff on how they help such parent-carers foster their health and well-being. We conclude that better communication and collaboration between service providers and users, more targeted training of workers, and embracing a person-centred and family-centred approach to respite services are needed. In addition, clearer definition and communication of the scope of respite services are required to best support families of children with significant disability in their home. [ABSTRACT FROM AUTHOR]

Background: Adults with intellectual disability (ID) experience poorer overall health than the wider population. Identification of personal, support service and lifestyle factors affecting health status will provide opportunities to improve health outcomes. Methods: The study was a cross-sectional survey of adults with ID. Interviews were conducted between January and July 2013. Univariate and multivariate analyses were performed using self- or proxy-reported general health as the dependent variable. Results: “Not good” health was independently associated with increasing age, financial hardship, smoking, and living in a home of their own. Physical exercise was inversely associated with not good health. Conclusions: Subjective health may be improved by attention to the factors identified in this study. This could include closer monitoring of the health of people with ID as they age and if they live in a home of their own. Similarly, targeted programs promoting physical activity and smoking reduction could improve general health for adults with ID. [ABSTRACT FROM AUTHOR]

Research supports the use of psychological therapies among people with mild to moderate intellectual disability (ID). One barrier to people with ID accessing psychological treatments is the confidence of mental health practitioners. This article explores the confidence of Australian clinicians in providing therapy to people with ID. One hundred and fifty-two psychologists and counselors in Australia completed a survey exploring self-reported confidence when working with clients who have ID and mental health difficulties. Clinicians were most confident with generic counseling skills, but less confident with elements of assessments and interventions. The use of treatment protocols was endorsed as helpful particularly among those with low confidence. This highlights the need for dissemination of treatment guides and training to help increase clinician confidence. [ABSTRACT FROM AUTHOR]

Social validity of treatment for paediatric feeding disorders can be defined as the extent to which caregivers find treatment goals and procedures acceptable, and the level of satisfaction with the outcomes of treatment. However, there are few studies which examine social validity data, or that evaluate social validity against key treatment variables. The aim of this report was to compare caregiver ratings of treatment acceptability and satisfaction against treatment variables. Social validity measures were obtained from the caregivers of all children consecutively admitted to a home-based behaviour-analytic treatment programme for paediatric feeding disorders (N = 32) in Australia. All children (M = 6 years, range 2–13 y) had severe feeding problems and most had mealtime skill deficits and autism and developmental delays or intellectual disabilities. Social validity measures included treatment acceptability and satisfaction surveys. In a retrospective analysis, social validity scores were compared against variables including participant characteristics and goals, treatment procedures, and treatment outcome. The retrospective analysis identified no significant correlations. In this sample, caregiver social validity ratings were very high, and data-based treatment outcomes for all children showed high levels of clinical significance including consumption, food variety, and feeding skill development. This report is the first to examine social validity in a data-based manner. With the exception of duration of treatment, no further relations were identified. Whilst the findings may be impacted by little variability/ceiling effects, this further communicates that the empirically-supported treatment for a paediatric feeding disorders is highly effective, and highly valued by caregivers of children. It is recommended that further data-based research continue to examine further measures and determinants of social validity. [ABSTRACT FROM AUTHOR]

Students with mild intellectual disabilities need explicit vocabulary instruction with multiple exposures in different contexts and extra practice in associating meanings to unfamiliar words to build their word knowledge. The purpose of this study was to examine the effect of multimedia-based computer assisted instruction on learning the meanings of words compared to the identical instruction without computers. Forty, Year 7 to 10 students were explicitly taught vocabulary words either via computer-assisted or teacher-directed instruction. The story Charlotte's Web was used as a context through a variety of evidenced-based instructional practices. The students' pre and post tests were based on Read's Word Associates Format (WAF) vocabulary test. Both the groups significantly improved their scores on post tests and retained most of the new learning five-months later suggesting that a multimedia programme could be used to improve vocabulary knowledge as effectively as a teacher. However, when comparing instructional tasks using Stahl's Depth of Processing model, there were differences that imply some instructional methods were more suited for multimedia presentation. This has implications for teacher practice regarding when to use computer-assisted instruction with students who have a mild intellectual disability. [ABSTRACT FROM AUTHOR]

Background: Research suggests that adults with autism tend to have poor outcomes. Outcomes have mostly been defined using summary outcome ratings, with less focus on specific outcomes such as employment, living situation, social satisfaction, loneliness, and friendships. This study aimed to explore social and community outcomes, including employment, education, living arrangements, friendships, and social satisfaction, for autistic adults with and without intellectual disability. Method: Eighty‐four adults with autism (mean age 34.2 years, SD = 4.5; 67% with co‐occurring intellectual disability), recruited as children and adolescents, participated in the current study. Adult social and community inclusion outcomes were explored through interview and questionnaire, both parent/carer‐report and self‐report. Results: Participants predominantly lived with family or in supported accommodation, did not pursue higher education, and mostly participated in day activity programmes. Most had limited friendships as reported by parents/carers; however, self‐report data (n = 28) indicated that adults were largely satisfied with their social relationships. Overall outcome was poor for 57%, and good/very good for 34%. Adults with intellectual disability generally had poorer outcomes. Conclusion: Autistic adults encountered numerous difficulties in leading an independent life. Adults with co‐occurring intellectual disability were most likely to experience difficulties; however, outcomes ranged from poor to very good for adults without intellectual disability. Discrepancies in parent/carer‐report and self‐reported experiences of friendships highlight the need to ensure individual experiences are captured in addition to parent/carer‐report. Appropriate resources and programmes are crucial for adults with autism to support them to have the choice to live independently. [ABSTRACT FROM AUTHOR]

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum. [ABSTRACT FROM AUTHOR]

Purpose: People with intellectual disability (PWID) appear more likely to be victims and perpetrators of crime. However, extant evidence pertaining to these risks is limited by methodological weaknesses and the absence of consistent operational definitions. This research aimed to estimate the prevalence of criminal histories and victimisation using a large, well-defined sample of PWID.Methods: A case-linkage study was conducted comprising 2220 PWID registered with disability services in Victoria, Australia, whose personal details were linked with a state-wide police database. Criminal charges and reports of victimisation were compared to a non-disabled community comparison sample (n = 2085).Results: PWID were at increased risk of having a history of criminal charges, particularly for violent and sexual offences. Although the non-disabled comparison group had a greater risk of criminal victimisation overall, PWID had a greatly increased risk of sexual and violent crime victimisation.Conclusions: PWID are at increased risk of victimisation and perpetration of violent and sexual crimes. Risk of sex offending and victimisation is particularly elevated, and signalling the need for specialised interventions to prevent offending and to ensure victims is assisted with access to justice, support, and treatment. [ABSTRACT FROM AUTHOR]

People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life. [ABSTRACT FROM PUBLISHER]