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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.

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

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.

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.