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Purpose There is an established literature supporting the idea that families who have children and adults who have a learning disability and/or autism have a greater vulnerability to mental health problems or poor psychological health. There are shortcomings in this literature in that there is a little consideration of the impact the families interaction with services has on their well-being. It is argued that complex post-traumatic stress disorder (CPTSD), with its focus on prolonged chronic exposure to trauma experiences and the recognition that this can occur in adulthood, may well be an appropriate framework to enable a better understanding of the experiences of families. Design/methodology/approach A total of 214 family members completed a co-produced online survey in relation to potential traumatic events, impacts and support. Findings The experiences of family carers of children and adults with a learning disability and/or who are autistic would appear to be multi-layered and complex, with many experiencing a wide range of traumatic events with the associated emotional and personal sequela. The reported responses are consistent with CPTSD with 10% of having received a diagnosis of PTSD. Their experience was that the system failed not only to provide support but also created additional trauma. Practical implications A trauma-informed approach needs to be adopted by agencies and professionals that serve families to ensure they understand their potential contribution to the trauma families experience. Originality/value To the best of the authors’ knowledge, this is the first study that has attempted to examine the experience of families using the framework of CPTSD.

Purpose The purpose of this paper is to provide an individual family-carer perspective on navigating the complex child, adult, education, health and social care systems focussing on what might be needed to get the right support in the right place at the right time for individuals with learning disabilities who display behaviour that challenges. Design/methodology/approach This is a conceptual analysis, drawing on lived experience, policy and practice. Findings Policy and best practice advocate a holistic, person-centred, outcome-focussed approach to supporting individuals with learning disabilities whose behaviour challenges, but the existing complex multiple organisational structures are not conducive to delivering this. Making the system work for people requires focussed leadership across all levels to co-ordinate and align the component parts. It is certainly possible to achieve, but it is currently unclear who will take responsibility for making this happen. Originality/value Families are often the only constant in the lives of people with disabilities. This commentary highlights what is important to and for families when attempts are made to get the right support in the right place at the right time for individuals with learning disabilities who display behaviour that challenges.

The coronavirus disease 2019 (COVID-19) pandemic is the most pressing issue we now face and has had major implications on the way we all live our lives. There are clearly specific issues faced by p...

Background:\ud The recent COVID-19 pandemic led to widespread international restrictions, severely impacting on health and social care services. For many individuals with an intellectual disability (ID) this meant reduced access to services and support for them and their carers.\ud \ud Aim:\ud The aim of this study was to gain insight into the ways parents of adults with ID coped during the first 2020 lockdown period.\ud \ud Methods:\ud Eight parents of adults with ID were interviewed. The recordings of these interviews were subjected to a thematic analysis.\ud \ud Results:\ud Four main themes were identified: powerless and unappreciated; coping under lockdown; support; and the impact of lockdown on well-being.\ud \ud Conclusions:\ud The parents of adults with ID who made up our sample reported that they received little support from services and experienced a sense of powerlessness. Nevertheless, they were open to accepting support from family and friends and showed remarkable resilience. These findings are discussed in the light of the Willner et al. (2020) survey results on parental mental health and coping, and suggestions for future service provision during pandemic conditions are proposed.

Background:\ud Recent COVID‐19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers.\ud \ud Aim:\ud The aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period.\ud \ud Methods:\ud Eight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis.\ud \ud Results:\ud Three main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future.\ud \ud Conclusions:\ud All mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well‐being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.\ud \ud

Issues: The current COVID-19 pandemic is a pressing world crisis and people with intellectual disabilities are vulnerable due to disparity in healthcare provision and physical and mental health multi-morbidity. Whilst most people will develop mild symptoms upon contracting SARS-CoV-2, some will develop serious complications. There are no current data about the impact of COVID-19 for people with intellectual disabilities. \ud Position: The aim of this paper is to present guidelines for the care and treatment of people with intellectual disabilities during the COVID-19 pandemic for both community teams providing care to people with intellectual disabilities and inpatient psychiatric settings. The guidelines cover specific issues associated with hospital passports, individual COVID-19 care plans, the important role of families and carers, capacity to make decisions, issues associated with social distancing, ceiling of care/treatment escalation plans, mental health and challenging behaviour, and caring for someone suspected of contracting or has contracted SARS-CoV-2 within community or inpatient psychiatric settings. We have proposed that the included conditions recommended by Public Health England to categorise someone as high risk of severe illness due to COVID-19 should also include mental health and challenging behaviour. \ud Conclusions: There are specific issues associated with providing care to people with intellectual disabilities and appropriate action must be taken by care providers to ensure that disparity of healthcare is addressed during the COVID-19 pandemic. We recognise that our guidance is focused upon healthcare delivery in England and invite others to augment our guidance for use in other jurisdictions. \ud

The minimal clinically important difference (MCID) is relevant in the estimation of improvement in a patient outcome.To determine the MCID on the Aberrant Behaviour Checklist-Irritability (ABC-I), widely used to measure the effects of intervention for aggressive challenging behaviour in people with intellectual disabilities.We utilised distribution and anchor based methods to estimate the ABC-I MCID. We extracted data from 15 randomised controlled trials (RCTs) for meta-analysis. We conducted three online workshops with family carers and professionals to consider meaningful change in case vignettes of increasing severity of aggressive challenging behaviour.We did not find overlap in the range of values between the two approaches. The meta-analysis indicated a range of MCID on the ABC-I (0.05, 4.94) whilst the anchor-based estimation indicated a larger change (6.6, 16.6).The MCID is essential in interpreting the results from intervention studies. The present work was undertaken as part of a wider programme on the development and testing of a psychosocial intervention for aggressive challenging behaviour, and it is of interest to researchers in justifying how they choose and determine the MCID on the outcome of interest.

Background: There is relatively little published data that report the experiences and views of family carers of people with intellectual disabilities who display challenging behaviour who are prescribed psychotropic medication. / Materials and methods: An online structured questionnaire was created by the Challenging Behaviour Foundation, a UK charity, and family carers of people with intellectual disability. Questions concerned the management of challenging behaviour and asked family carers about their experiences and views on the use of psychotropic medication. Responses were gathered between August and October 2016. Results are summarised using descriptive and inferential statistics and descriptive analysis of free‐text comments. / Findings: Ninety‐nine family carers completed the survey. Family carers reported gaps in the holistic and proactive management of challenging behaviour. Whilst some felt involved in decisions around psychotropic medication prescribing, others described feeling marginalised and lacking information and influence. The decision to prescribe psychotropic medication evoked complex emotions in family carers and medication use was associated with mixed outcomes in those prescribed. Family carers identified areas of good practice and those areas where they believe improvements are needed. / Conclusions: Psychotropic medication should be only one option in a multimodal approach to challenging behaviour, but this may not always be reflected in current practice. Greater effort needs to be made to ensure that services are equipped to provide optimum care and to embed shared decision‐making into routine practice.

Background Behaviour that challenges in people with intellectual disability is associated with higher healthcare, social care and societal costs. Although behavioural therapies are widely used, there is limited evidence regarding the cost and quality-adjusted life-years (QALYs). Aims We aimed to assess the incremental cost per QALY gained of therapist training in positive behaviour support (PBS) and treatment as usual (TAU) compared with TAU using data from a cluster randomised controlled trial (Clinical Trials.gov registration: NCT01680276). Method We conducted a cost-utility analysis (cost per QALY gained) of 23 teams randomised to PBS or TAU, with a total of 246 participants followed up over 36 months. The primary analysis was from a healthcare cost perspective with a secondary analysis from a societal cost perspective. Results Over 36 months the intervention resulted in an additional 0.175 QALYs (discounted and adjusted 95% CI −0.068 to 0.418). The total cost of training in and delivery of PBS is £1598 per participant plus an additional cost of healthcare of £399 (discounted and adjusted 95% CI −603 to 1724). From a healthcare cost perspective there is an 85% probability that the intervention is cost-effective compared with TAU at a £30 000 willingness to pay for a QALY threshold. Conclusions There was a high probability that training in PBS is cost-effective as the cost of training and delivery of PBS is balanced out by modest improvements in quality of life. However, staff training in PBS is not supported given we found no evidence for clinical effectiveness.

Introduction: \ud The measures implemented to manage the COVID‐19 pandemic have been shown to impair mental health. This problem is likely to be exacerbated for carers. Method: Informal carers (mainly parents) of children and adults with intellectual disabilities, and a comparison group of parents of children without disabilities, completed an online questionnaire. Almost all the data were collected while strict lockdown conditions were in place. Results: Relative to carers of children without intellectual disability, carers of both children and adults with intellectual disability had significantly greater levels of a wish fulfilment coping style, defeat/entrapment, anxiety, and depression. Differences were 2–3 times greater than reported in earlier pre‐pandemic studies. Positive correlations were found between objective stress scores and all mental health outcomes. Despite their greater mental health needs, carers of those with intellectual disability received less social support from a variety of sources. Conclusions: The greater mental health needs of carers in the context of lesser social support raises serious concerns. We consider the policy implications of these findings.

Background: Improving the quality of social care through the implementation of setting-wide positive behaviour support (SWPBS) may reduce and prevent challenging behaviour.\ud \ud Method: Twenty-four supported accommodation settings were randomized to experimental or control conditions. Settings in both groups had access to individualized PBS either via the organisation’s Behaviour Support Team or from external professionals. Additionally, within the experimental group, social care practice was reviewed and improvement programmes set going. Progress was supported through coaching managers and staff to enhance their performance and draw more effectively on existing resources, and through monthly monitoring over 8–11 months. Quality of support, quality of life and challenging behaviour were measured at baseline and after intervention with challenging behaviour being additionally measured at long-term follow-up 12–18 months later.\ud \ud Results: Following intervention there were significant changes to social care practice and quality of support in the experimental group. Ratings of challenging behaviour declined significantly more in the experimental group and the difference between groups was maintained at follow-up. There was no significant difference between the groups in measurement of quality of life. Staff, family members and professionals evaluated the intervention and its outcomes positively.\ud \ud Conclusions: Some challenging behaviour in social care settings may be prevented by SWPBS that improves the quality of support provided to individuals.

Purpose – The purpose of this paper is to report on a personalisation project run by the Challenging Behaviour Foundation (CBF) which aims to share the identified barriers and solutions to personalisation for people with severe learning disabilities and behaviour described as challenging. Design/methodology/approach – A small project team consisting of a project manager, housing specialist and positive behavioural support specialist worked as consultants with selected East Midlands local authority and NHS commissioners and with six families from other areas. Findings – The main barrier to personalisation was the volume of, and priority given to, safeguarding referrals by frontline commissioning social care workers. This reduced capacity for a proactive approach to support planning. Workers who participated in the project appreciated the expertise and support of the project team and the opportunity to reflect on their work. However, a major project limitation was a lack of time for commissioning workers and managers to engage with the project. Practical implications – The project report provided a series of recommendations for action for commissioners of health and social care support and for families. The Winterbourne View scandal broke as the project was established and its findings are helpful to anyone taking forward action plans to improve commissioning practices to avoid the continued commissioning of poor quality care. Originality/value – The project sought direct engagement in planning in “real time” with frontline commissioning staff and the families of people with severe learning disabilities and behaviour described as challenging. It is hoped that the value of the paper will be to influence NHS and LA commissioners to improve their response to people with severe learning disabilities.

Purpose – The purpose of this article is to provide a perspective from family carers on the promotion of independence and the prevention of avoidable dependency. Design/methodology/approach – Narrative review and discussion. Findings – Family carers frequently experience their own or their relatives’ needs being met only when they have reached crisis point. A shift to a more preventive approach, delivered in a personalised and family-centred manner, could transform the experiences of people with learning disabilities and their families. Originality/value – Attention is drawn to the importance of strengthening the case for a preventive approach and the role of co-ordinated and strategic leadership in its delivery.

PurposeThis paper aims to give an overview of the exposure of abusive practices in services for people with intellectual disabilities, and the resulting inquiries and reports. It also aims to consider the common findings and recommendations and what difference they have made to support and services for people with intellectual disabilities whose behaviour is described as challenging.Design/methodology/approachThe paper briefly reviews the main inquiries, subsequent reports and the recommendations made. The common themes are discussed and considered in the light of the most recent Department of Health Review following the Panorama Undercover Care documentary – (unpublished at the time of writing).FindingsThe paper highlights the recurrent themes which persist through a series of inquiries and reports.Originality/valueThe paper suggests what needs to happen to ensure that recommendations translate into action on the ground, to deliver better outcomes for individuals.

There is a wealth of policy and best practice guidance on working with children and adults with severe learning disabilities and behaviour that is perceived as challenging. However, the day‐to‐day experiences for many individuals are often far removed from what the policy documents say should be happening. The author describes the history and work of the Challenging Behaviour Foundation in meeting these challenges on the ground and providing support and information to people with challenging behaviour and their families.

Daniel was born on the 6th August 1985. Approximately two weeks later he was diagnosed as having cri du chat syndrome, a relatively rare genetic condition arising from the partial deletion of the short arm of chromosome 5. We were told that he would have severe learning difficulties, and we were handed a photocopied page of a reference book referring to a study carried out on institutionalised individuals with the syndrome, which painted a very bleak picture of his future. This paper is the story of what followed.

Background: This study sought to gather information about the characteristics and experiences of children and young people with severe intellectual disabilities and severe challenging behaviour attending 52-week residential special schools.\ud \ud Method: Staff of nine schools completed postal questionnaires on the characteristics and experiences of 156 pupils.\ud \ud Results: Those attending residential schools are predominantly male, teenagers and in long-term placements. Most have limited communication skills and autistic spectrum disorders. All display high numbers of challenging behaviours, many of them serious. Children have a greater range and complexity of needs than pupils at day severe learning difficulties (SLD) schools, albeit with some overlap.\ud \ud Conclusions: Children at 52-week residential schools present needs that both families and local services struggle to meet. Residential placement may provide the intensity of educational input and social support that is required, but may increase the vulnerability of the children. Local alternatives to residential schools should be investigated.

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 reports the findings of a survey of parents whose children attended 52-week residential schools. Seventy-three parents completed a postal questionnaire which asked questions about three main areas: support and services received prior to their child’s entry into residential education; perceptions of the quality of care and education provided by residential schools; and concerns for their child’s future care and welfare. Telephone interviews were conducted with 14 parents, to obtain additional information on the topics addressed by the questionnaire. Parents were critical of services and support received prior to their child’s entry into residential education and reported high rates of exclusion from local services. Residential schools were generally perceived as providing a good quality of service, though considerable concern was expressed about their geographical distance from the family home, and this had a significant impact on the frequency of visits. Parents expressed high levels of concern about the future care and support needs of their children. Further research is required to understand the relationship between the availability and quality of local services and the need for 52-week residential schools. The impact of distant residential education on parent–child relationships and on future demand for residential care is considered.