Editorial: An international showcase

A question of perspective—parenting and other matters in the lives of people with learning disabilities

Accessible Summary In this paper I describe how self‐advocacy has grown in the Czech Republic. First, I talk about how services for people with learning disabilities have begun to change in the last few years. This is because voluntary groups have lobbied and campaigned for change. I learned about self‐advocacy during a visit to the UK in the 1990s. I went back to the Czech Republic and asked some service users I knew whether they would like to start the country's first self‐advocacy group. They agreed and since then the group has grown and developed new networks. The group has also received some financial and practical support from the biggest parents’ organization for people with learning disabilities in the Czech Republic. A number of conferences have been organized by self‐advocates, including one at the Czech Republic Parliament. Other people are now starting to take notice of what self‐advocates are saying. Support for self‐advocacy is an important issue for its future in the Czech Republic.

Plain English summary(Please see www.Toolsfortalking.co.uk for an easy read summary of the project.)The Tools for Talking are a set of resources that were developed through collaboration between Black, Asian and minority ethnic people with learning disabilities and researchers at the University of Birmingham. The resources were designed to be used by people with learning disabilities and service providers to facilitate culturally-sensitive communication and information sharing, service planning and delivery. They comprise illustrative videos and exploratory activities relating to five topics, namely, culture, activities, support from staff, important people, choices and independence. These topics emerged as important to people with learning disabilities during the ‘Access to Social Care-Learning Disabilities’ (ASC-LD) study which involved interviews with 32 adults with learning disabilities from Black, Asian and minority ethnic communities. The results of the ASC-LD study were used to develop a set of draft resources which were then co-developed through collaboration with people with learning disabilities and service providers. A ‘Partnership event’ was convened to involve stakeholders in the development of the resources. This paper describes the refinement of these materials by people with learning disabilities from Black, Asian and minority ethnic backgrounds in cooperation with a range of other stakeholders.BackgroundBlack, Asian and minority ethnic people with learning disabilities face inequities in health and social care provision. Lower levels of service uptake and satisfaction with services have been reported, however, this is largely based on the views of carers. The ‘Access to Social Care: Learning Disabilities (ASC-LD)’ study sought to explore the views and experiences of social support services among adults with learning disabilities from Black, Asian and minority ethnic communities. Interviews with 32 Black, Asian and minority ethnic adults with learning disabilities were conducted to explore participants’ cultural identities, their understanding and experience of ‘support’. The views and experiences expressed in the ASC-LD study were used in the ‘Tools for Talking project’ to develop a suite of resources designed to facilitate culturally-sensitive communication and information-sharing, service planning and delivery through improved mutual understanding between providers and users of services. This paper describes the Tools for Talking project which sought to co-develop the resources through a partnership event.MethodsAn inclusive approach was adopted to address issues that are important to people with learning disabilities, to represent their views and experiences, and to involve Black, Asian and minority ethnic people with learning disabilities in the research process. Partnerships were developed with provider organisations and service users who were invited to a ‘Partnership Event’. Collaborators at the partnership event were asked to comment on and evaluate draft resources which included a series of videos and activities to explore topics that emerged as important in the ASC-LD study. Their comments were collated and the tools developed as they suggested.ResultsUsing the results from the ASC-LD study helped to ensure that the draft resources were relevant to service users, addressing topics that were important to them. The partnership event was an effective method to collaborate with a relatively large number of stakeholders. However, the event was resource intensive and required substantial planning to ensure active and meaningful participation. Considerations, such as inviting stakeholders, developing the programme and selecting a venue are discussed.ConclusionsThe partnership approach has led to the development of a set of five illustrative videos and accompanying activities that address issues that emerged from the collaborative process including: culture, activities, support from staff, important people, choices and independence. These resources are freely available at: www.Toolsfortalking.co.uk. They are designed to be used by users and providers of services, but may also be useful in other settings.

<b>BACKGROUND</b><br /> The paper deals with learning disabilities (LD) of university students in the Czech Republic. The first part describes most common trends in professional care of students with LD in historical context, the second part analyses contemporary situation of support of students with LD during their university studies. Pivotal part of the text describes the situation at Faculty of Education, Charles University in Prague, from the perspective of state LD students, their difficulties and means of possible support.<br /> <b>PARTICIPANTS AND PROCEDURE</b><br /> Qualitative analysis of functional diagnostics took place in the frame of evidence of 15 students with learning disabilities. Focal point of the functional diagnostics is a structured interview in which an identification of needed modification for studying with specific educational needs of students with LD takes place.<br /> <b>RESULTS</b><br /> From our analyses it can be stated, that students with LD apply for registration basing on their experience with high school status of a student with SD, or that their decision is influenced by their current study problems or the fact that they went through a modified entrance exam. We have also discovered the fact, that except for the difficulties which result from the type and degree of the disability and which can be compensated by specific approaches, students also need an emotional and social support.<br /> Learning disability is not, however, perceived only as a disadvantage, many students have stated that it has motivated them in their further development.<br /> <b>CONCLUSIONS</b><br /> Achieved results point to general specifics to the perceived difficulties, to the specifics of the concrete degrees and to the further personal (emotional, social) characteristics of LD students and they support recommended modification for successful studies.

<h3>Background</h3> People with learning disabilities have poorer health than the general population and experience health inequalities in a number of different ways (JSNA Briefing on Learning Disabilities. Worcestershire County Council, 2018). LeDeR (The Learning Disabilities Mortality Review, 2018) suggest a disparity in the age of death for people with learning disabilities and the general population to be 23 years for males and 27 years for females. <h3>Aims</h3> Ensure hospice care is seen as an option for people with a learning disability at the end of life with increased external awareness, improved access, internal education and supporting conversations in the community about death and end of life with people with a learning disability. <h3>Methods</h3> St Richard's Hospice made three pledges in the SpeakEasy NOW White Paper on Growing Older and End of Life. As a result we have started an internal learning disability working group and work in partnership with SpeakEasy NOW to improve knowledge and access to end of life care for people with learning disabilities. <h3>Results</h3> In partnership with SpeakEasy NOW: Created a bespoke easy–read hospice leaflet which has been peer reviewed by people with a learning disability; Filmed a video with people with learning disabilities on why and how to talk to loved ones about end of life wishes; Hosted a free event on growing older and end of life for people with a learning disability and their carers involving information stalls and interactive workshops; Exploring learning disability champions in hospice clinical teams; Exploring hosting conversation events across the county about end of life with people with learning disabilities. <h3>Conclusion</h3> St Richard's Hospice is committed to ensuring everyone who has a specialist palliative care need has access to appropriate support. In partnership with SpeakEasy NOW, we are improving access, awareness and conversations about death and dying with people with a learning disability and their loved ones.

Editorial

Individuals with specific learning disorders often leave school with fewer qualifications and mostly become unemployed or economically inactive, if they are not sufficiently supported. In addition, they face numerous obstacles and challenges in their life due to their disability. Therefore, it is important to provide appropriate support to overcome their barriers in learning and to succeed in their lives. There is no sufficient expertise and services currently available in Sri Lanka to support individuals with specific learning disabilities effectively. Efforts to support the education of individuals with specific learning disabilities are underlined in the Czech Education Act and it can be identified that there are many effective services and facilities available for students with learning disabilities in the Czech Republic, compared to Sri Lanka. Consequently, this review article attempts to examine the health and special educational facilities and supportive services provided for individuals with specific learning disorders in Czech Republic and Sri Lanka with the intention of providing many valid recommendations for Sri Lanka to develop and improve the healthcare and special education systems for individuals with learning disabilities.

Accessible summary People with learning disabilities are living longer. Older people with learning disabilities should be included in policies and plans that are for all older people. National plans and policies for older people often do not say anything about older people with learning disabilities, and it is hard to know whether older people with learning disabilities are benefiting. People who plan services locally often do not have good information on older people with learning disabilities. Using the Equalities Act 2010 could help people who plan services and write policy to think about older people with learning disabilities but this is not happening at the moment. People who work with older people with learning disabilities should be aware of policy for all older people, so that older people with learning disabilities do not miss out. AbstractBackground: This paper seeks to explore the opportunities and challenges generated by current policy, guidance and legislation in England relating to older people, in terms of the practical implications for older people with learning disabilities.Methods: Using the broad themes housing, employment, social inclusion and isolation, care and support, and promoting better health and well‐being, this paper discusses potential practical opportunities and concerns for older people with learning disabilities arising from policy and legislation such as current initiatives regarding integration, personalisation and the dementia policy. Consideration is given to the implications of changing policy and practice for both current and future generations of people with a learning disability as they reach older age.Conclusions: This discussion paper concludes that whilst there is potential for older people with a learning disability to benefit from policy and practice aimed at improving the lives of older people generally, the tendency for policy to be targeted at specific groups without adequately considering the diversity of those groups often leaves those with a learning disability at the margins of being able to make the most of changes.

Exclusion criterion: learning disability

A number of changes in legislation have made an impact on the way services engage with people who have a learning disability. These include the Mental Capacity Act amended in 2007 and the Forced Marriage Civil Protection Act 2007. The impact of these two acts has helped psychological services in particular support people with learning disabilities to make informed decisions about their lives. They have also highlighted issues relating to an individual’s right to make choices, which may not ultimately be in their best interests when they have a learning disability. Prevalence rates Overall, prevalence rates for a mild learning disability range between three and six people per thousand of the general population (DH, 2001). In the UK, it is estimated that up to 350,000 people have a severe learning disability and as many as 1,750,000 people may have a mild learning disability (The Foundation for people with Learning Disabilities 2003). Although recent initiatives such as Valuing People: A New Strategy for Learning Disability for the 21st Century (DH 2001) as well as the Six Lives report ( 2010) and Winterbourne Enquiry (2012) have ensured the lives of learning disabled people have become an issue of public and political importance, historically, the treatment of this population has been poor (Sperlinger 1999). Throughout the nineteenth and first half of the twentieth century, alongside efforts to provide institutional care and training, people with learning disabilities were subject to humiliation, exhibited as freaks, threatened with eradication or put at risk for the ‘good of others.’ The latter was evidenced by the early testing of the measles vaccine (O’Hara, 2003). We would argue that historical perceptions of people with learning disabilities as less valued by society, their needs ignored and their emotional lives largely misunderstood, are still represented in some present day ethical and moral value systems. As a consequence of the above we believe that as well as policy initiatives, the value system of the therapist is paramount and is likely to be reflected in their way of working and being with the client. For example therapeutic integrity might be undermined if a therapist fundamentally believes people with a learning disability lack capacity and should be denied the opportunity, for example, to have fulfilling sex lives or if a client has a genetic disorder/syndrome and the therapist believes this means that they should not procreate.

Accessible Summary Adults with learning disabilities and diabetes are more likely to have health problems than people with diabetes who do not have learning disabilities. This research had two aims. One was to find out what stops adults with learning disabilities from getting help with their diabetes. The other was to find out what things help them get the best care for their diabetes. We found 12 things that stop adults with learning disabilities from getting good care for their diabetes and 14 things that help them get good care. The findings from this research can be used to improve the lives of adults living with learning disabilities and diabetes. AbstractBackgroundIndividuals with diabetes and a learning disability have poorer health outcomes than those without a learning disability. In the UK, the health inequalities faced by people with learning disabilities are often the result of barriers they face in accessing timely, appropriate and effective health care. The aim of the study was toreview relevant literature to identify the barriers and enablers to optimal diabetes care for adults with learning disabilities.MethodsSystematic review methodology was used to answer the research question: What barriers and enablers to optimal diabetes care exist for adults with learning disabilities? This review is reported according to PRISMA guidelines. Key databases were searched using relevant terms. Included studies were synthesised using thematic analysis and were quality appraised.FindingsThis review identified 12 barriers to optimal diabetes care for adults with learning disabilities and 14 enablers to optimal care from 10 diverse publications. Low level of diabetes knowledge and understanding and systems that do not allow reasonable adjustments were the barriers considered to have the greatest reliability. The enabler identified to have the highest reliability was person‐centred planning and reasonable adjustments.ConclusionThis work highlights key actions that can be undertaken to address inequalities in diabetes care for people with learning disabilities. With additional research in this field, further progress can be made to improve the lives of those adults living with learning disabilities and diabetes.

Accessible summary After the consultation with people with learning disabilities, the topic of health inequalities was chosen for the 2024 special issue. The lives of people with learning disabilities around the world was also of interest to people so we have made this the theme of this issue. There are papers from the Czech Republic, Hong Kong, Belgium, Chile and Iceland. We also have papers about life in the COVID‐19 pandemic.

1. EXECUTIVE SUMMARY 1.1 Background: Social care in the United Kingdom has been transformed in recent years, driven by the implementation of the personalisation agenda alongside significant budget cuts, which have resulted in restricted eligibility for social care services. The personalisation agenda aims to eradicate a ‘one size fits all’ service, by providing individuals with the opportunity to contribute to the identification of their needs and the opportunity to choose and manage their own care through a personal budget. Previous studies evaluating the effectiveness of the personalisation model in the UK have reported that individuals who are more able, and who have stronger support networks, benefit most from personalised social care [1]; however, this same group is considered most at risk of becoming ineligible for statutory service provision due to restricted eligibility criteria. Reduction of budgets at a local authority level has also been associated with services only being provided to those individuals classified as having critical or substantial needs [2]. The current study aimed to explore the daily living experiences of a group of adults with mild to moderate learning disabilities (LD), who were either not accessing statutory social care services, or who were considered at risk of becoming ineligible for continued statutory support. The study was undertaken following a request from a voluntary sector forum, whose members were concerned about the impact of changes in the social care system on the lives of people with mild and moderate LD. 1.2 Method: • Seven focus groups were conducted, including 26 people with LD and 15 support workers, who were recruited via third-sector organisations. Participants were aged between 23 and 60. • A semi-structured question schedule was implemented, through which people were asked about their experiences in relation to managing their home, involvement in their local community, and access to healthcare, support services, education, employment and leisure activities. • The focus groups were video-recorded, transcribed and analysed thematically. 1.3 Findings: Themes identified in the focus group discussions are summarised below. Independence and control • People often wanted to live independently, but many found managing the transition into supported or independent living challenging. • Conflicts between the wishes of people with LD and their family carers can result in individuals becoming less of a priority for supported living allocation. • People valued employment and wanted paid work, but were concerned about the impact of this on their benefits. • People had difficulty in managing personal assistants (PAs) and reported having to fit in with PAs’ timetables. The role of employer was identified as stressful, with a lack of training and support provided. • The limited range of employment, social activities and educational opportunities available for people with LD is a barrier to independence. • Stereotyping of people with LD negatively influences employment and education opportunities. • Bullying and harassment in the community can impact on social inclusion and independence for people with LD. Social networks and wellbeing • Voluntary sector organisations offered opportunities to socialise within the local community, which were highly valued and improved quality of life. • Social networks have been fragmented following the closure of specialist day services, resulting in social isolation for some people. • Statutory assessment of need places more emphasis on basic living needs than on social relationships. • The high turnover of PAs made forming and maintaining relationships difficult. • A lack of social support limited opportunities for independence. • Mental health can be adversely affected by the breakdown of social networks. 1. 4 Conclusions Participants used the language of personalisation when talking about their aspirations for greater independence. However, they also identified a number of barriers to greater independence, e.g. not having adequate training and support in navigating the benefits system, or ‘managing’ a PA under the personal budget system, the lack of availability of educational, employment, and leisure opportunities and experiences of discrimination and harassment in the community. There were also examples of people who did not aspire to greater independence and who wanted more support but were not able to get this. The personalisation agenda, delivered in the context of an imperative to reduce spending, perhaps is not a good fit for these individuals. Voluntary sector organisations were seen as central to supporting social relationships, yet many of these organisations are also facing funding cuts. Strong social support networks were described as having a clear influence on quality of life and wellbeing. Wellbeing is now the responsibility of local authorities [5, 6] yet statutory assessment was described as not focusing on the development or maintenance of social networks. This study highlights the need to listen to the voices of people with LD. The findings of this report will be shared with organisations that plan, commission and deliver care to people with LD in York.

Accessible summary This article is about people with a learning disability doing research with therapists. It is about how we are learning to do research together. The research is trying to see if counselling and therapy helps people with a learning disability feel better. One way of doing this is to ask people questions about their feelings before and after counselling. We want to have some questions about how it feels living with a learning disability. Our group is talking about this. They have made a list of what they have said. They plan to ask other people if they agree. This research matters because people with learning disabilities are doing the research. They know what it is like living with a learning disability. They know what things that are important to them. They can help make a questionnaire that other people with learning disabilities will find easy to understand. The questionnaire should help people see how feelings can change over time. SummaryPeople with a learning disability, the experts of their own experience are increasingly involved in research. We will be discussing in this paper their centrality in the development of a psychological therapy outcome measure for people with learning disabilities. Their involvement needs to go beyond giving their views to being included in the whole research process. It is anticipated that such participatory research will help create a measurement tool that has greater meaning and validity for people with a learning disability. We are adapting clinical outcomes in routine evaluation – outcome measure (CORE‐OM) Evans et al. (2000, J Ment Health, 9, 247), the dominant psychotherapy outcome measure in routine use in the UK, for this purpose. However the existing four domains of CORE‐OM (well being, problems/symptoms, functioning and risk) do not address some of the issues and feelings that impact on the lives of people with a learning disability. This we call the ‘missing domain’ and it is the focus of this present research. Within the Collaborative Research Group (CoRG) we are seeking to uncover the essential elements of this missing domain and convert them into items for a new domain. This article examines some of the issues involved in the complex interrelationship between the process of research and the outcome of research.

Although this is The British Journal of Learning Disabilities we have an international readership and an increasing number of contributions from across the world. As editor I would like to encourage this and there is an international editorial board and a panel of peer reviewers from across the world to help with the process. The Journal seeks to bring together a range of different perspectives about learning disabilities that includes a global discussion. One of the difficulties with this approach is the differences in definition of learning disabilities as well as very different service models. There are however some similarities and one unfortunate one is the economic downturn and the likely effect it is to have on people with learning disabilities. In Britain there will be a general election some time this Spring. Indeed it may have taken place by the time you read this. Whoever wins the election we are told to brace ourselves for budget cuts. At least some of these cuts are likely to come in the area of social care and will affect services for people with learning disabilities and their families. Already the proposed cuts are becoming linked with the personalisation agenda. This link reminds me of the development of community care for people with learning disabilities thirty years ago when part of the push to close long stay institutions was to save money (erroneously as it turned out). This coincided with the philosophy of the day that lay behind smaller living units. I have no doubt that personalisation will lead to much improved lives for disabled people who can take control of their own support. I’m less sure that this will be a cheaper option. One of the papers in this issue explores a neglected aspect of personalisation. Williams and colleagues from the Norah Fry Centre at the University of Bristol consider the area of skills required for good personal assistants. This includes a list of desirable characteristics from the point of view of people with learning disabilities. This subject will become particularly important as the focus of services continues to move towards person centred approaches. There is also a paper about involving people with learning disabilities in research. This is designed as an accessible article and is written by a research team that includes learning disabled members based in Leeds. Garbutt and colleagues focus on the research that they have undertaken about sex and relationships for people with learning disabilities. The Journal is receiving an increasing number of papers written in an accessible way. Some of the submitted papers are written by, or with people with earning disabilities. This provides the production team some challenges in terms of print size and illustrations but there are also some difficult editorial decisions to be made. While wanting to encourage accessibility we also have an obligation to publish work that develops knowledge. Some of the manuscripts that are submitted report work that has been very useful for the research team but is similar to work that has already been published. Other work reports new findings but without the background that is needed for an academic journal. Participative research actively seeks to address the power disparity between different groups of people and a second paper from Campbell and Martin also addresses this theme albeit in a different way. Their paper on reducing health inequalities in Scotland considers ways of involving leaning disabled people as national health services reviewers. There is also a paper that reports on research that involves interviews with children on the autistic spectrum as well as their parents and carers. Children were generally happy with their lives at home but had mixed feelings about short breaks away with organised services. It is not surprising that some of the problems were associated with noise and changes in discipline. Boydon, Freeman and Offen report on the establishment of a loss and bereavement psychotherapy group in Birmingham. The authors hope that reporting on the success of this group will encourage others to start similar projects. Jones and colleagues also report on a practice development, in their case this is a multidisciplinary health screening clinic set up by a Community Learning Disability Team in Fife. Finally and to return to my original theme I am pleased to see that there is also a paper from the Netherlands. Tadema and Vlaskamp from the University of Groningen asked 133 parents about the basic care tasks that were involved in the care of their child. The parents suggested that professional support was very helpful to them and it is interesting to compare this with the level and type of support offered elsewhere.