The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.

The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.

"Epilepsy, it's just not sexy, is it?": A qualitative exploration into health and social care professionals' perspectives of people with intellectual disabilities and epilepsy, in social care.

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

Learning disabilities: Interventions and clinical issues

Characteristics and Needs of People With Intellectual Disability Who Have Higher IQs

Background: Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care planning. Aim: To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services. Design: A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities. Setting/participants: A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK. Results: There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying. Conclusions: To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.

Dementia care: Research and clinical innovation.

This first general edition for the year (the January edition having been a mental health edition) provides an opportunity for me as Editor to reflect on the past year and to consider the next with respect to JIDR and to research in intellectual disabilities more generally. This past year has been a good year for JIDR. Our impact factor has increased and is now 1.85, the best of the main journals in our field. We have continued to receive high quality papers covering a diverse range of topics, and the numbers of downloads have continued to increase, now approximately 230,000 over the year. I would therefore like to thank all those who have submitted papers, those who review them, and all members of the editorial team for their work. I hope we are providing an efficient and friendly service. I continue to be very impressed by the quality and thoughtfulness of referee's comments and I am particularly grateful for all the effort that individuals go to when evaluating and commenting on submitted papers. In our relatively small field of research we are dependent on a limited number of people to both do the research and to review the outcomes. One of the privileges of this post was having been asked to give a view on the future direction of research in intellectual disabilities. In 2009 the UK Government published a report on specific learning difficulties as part of their Foresight Project – Mental Capital and Wellbeing: making the most of ourselves in the 21st century. This report included a section on adult intellectual (learning) disabilities (http://www.foresight.gov.uk/Mental%20Capital/SR-D3_MCW.pdf). This State-of-Science Review was commissioned by the Government's Office for Science and is produced to guide Ministers with respect to future policy. In addition to this exercise, during this past year the UK Medical Research Council (MRC) commissioned a group to examine areas of academic endeavour that they considered, on the basis of the recent Research Assessment Exercise, to be limited – this included intellectual disabilities. The end of one year and the beginning of another is perhaps the moment to reflect on what the above exercises taught us about the nature of, the need for, and the practice of research in this area of academic study, and to also consider how such reflections and observations in one country might apply more widely across the different countries of the world, whatever their economic circumstances. In the Foresight Project three broad areas of enquiry were identified that embrace different approaches and academic disciplines. These included: a) human rights, citizenship, and access to justice; b) developmental processes, resilience, and the prevention, management and treatment of associated behaviour problems and psychiatric disorders; and c) the consequences of changing demographics and the delivery of health care in community settings. Whilst the emphasis may be different, these issues are all likely to be of significance across the world whether in low or high resource countries. These themes touch on the marginalisation of people with disabilities, the health inequalities and inequities they experience, and also on the uniqueness of developmental profiles and the complexity and heterogeneity of people with different neurodevelopmental syndromes. The MRC review raised very different issues that included how a minority interdisciplinary academic grouping such as ours gains and maintains a high profile and how we present work in a manner that ensures it is appropriately recognised and respected by funders such as national Research Councils or Institutes of Health or, international bodies, such as the European Union. As Editor of this journal, one problematic issue is the weight that is given by other scientists outside of intellectual disabilities to publications in, for example, Nature journals, and the limited attention paid to the journals, like JIDR, that serve a small and more focused field of academic study – in this case intellectual disabilities. We should, as researchers, include high profile journals in those that we submit to thereby raising the profile of intellectual disabilities more generally. However, it is very important to be clear that JIDR also aims for high academic standards and in contrast to these other journals has the advantage of bringing together research findings from many different studies whose focus is on intellectual disabilities. In addition, papers in JIDR are read by practitioners, and therefore inform policy and practice. The dilemma is that as impact factors, citation rates, etc take on a greater significance, those subjects in which there is a small academic base are in danger of being over-shadowed. As such measures, and the particular high profile journals that papers are published in, become the prime arbiters of success, there is a problem for us. The reality is that as economic circumstances become more difficult, so then the battle for research resources becomes more intense. My own sense of research in intellectual disabilities is that high quality research is undoubtedly being undertaken in the basic and clinical sciences, behavioural and cognitive neurosciences, and in the social sciences. The challenge is how we continue to raise standards and remain party to and publish fundamental and applied research of the highest standards, and ultimately how this knowledge is then translated into new and more informed and effective interventions and policy and practice. A further lesson is the importance for researchers and practitioners to know about related areas of science so that we can best ascertain when to embrace new research technologies and methodologies. Furthermore, we also need to be prepared to challenge the status quo through new conceptual understandings of existing ideas – this is one of the reasons JIDR has a hypothesis section. This is not promoting technology for technology's sake; rather it is recognising that research possibilities are developing in ways that could not previously be envisaged. Neither is this because existing methods are poor; it is rather that new techniques allow new questions that have a direct relevance to the understanding of intellectual disabilities to be answered that previously could not be addressed. The obvious examples are in genetics (e.g. rapid gene sequencing and gene expression technologies) and in the neurosciences (e.g. electrophysiological, and MRI, MRS, and PET scanning technologies). However, advanced statistical methods, detailed observational studies, qualitative research, mixed methods, and empirical ethics are also examples of the diversity of research approaches that are developing and have been and could be used. Methodologically sound intervention trials that can address the potential difficulties of recruitment and consent will increasingly be required. For reasons of the rarity of potential participants or because of complexity these approaches will require the development of collaborations and networks and agreed methodologies and shared databases. The message is that we need to bring into intellectual disabilities research techniques and technologies that push the boundaries forward. Perhaps the greatest challenge of all is the need for knowledge transfer and the implementation of change in practice, based on robust research findings. This issue was highlighted in the UK by the Cooksey Report (http://www.hm-treasury.gov.uk/cooksey_review_index.htm) and led to changes in the way in which UK Government research funding is organised and allocated. The challenge for those undertaking research in intellectual disability is therefore twofold. The first is how to raise our game and meet the challenge of obtaining research resources in a competitive and demanding environment. The second is to ensure that our research does not sit on the shelf, but that we disseminate our findings in a manner that informs and changes practice for the better. In this particular regard JIDR can be of very definite value. There is a third challenge that goes beyond the research community, that is one of engaging ever increasingly within the international community. Though countries differ greatly in their economic status and the availability of resources, and in their cultural approaches and legal frameworks, ultimately, we are bound together through the substantive issues within intellectual disabilities. Working together can only lead us to further insights and research developments by both the sharing of approaches and by the challenge that this brings to our own perspectives.

Academy of Nutrition and Dietetics: Standards of Practice and Standards of Professional Performance for Registered Dietitians (Competent, Proficient, and Expert) in Intellectual and Developmental Disabilities

Ensuring that research participants accurately reflect patient populations is critical for the equitable distribution of the benefits and burdens of studies; however, many groups experiencing health disparities remain underrepresented in research. This study interviewed research team members (n = 25) interested in inclusive recruitment to understand their perspectives on engaging adults with intellectual and developmental disabilities in general population research. Team-based thematic analysis revealed barriers to the inclusion of adults with intellectual and developmental disabilities including 1) use of direct and indirect exclusionary practices, 2) lack of knowledge and skills, 3) reliance on ad hoc accommodations, 4) perceptions that including adults with intellectual disabilities in research lacks scientific value, and 5) beliefs that people with intellectual and developmental disabilities are not able or willing to participate. However, while team members acknowledged a lack of knowledge and skills to include people with intellectual and developmental disabilities, there was a strong interest in learning.

The future for research in intellectual disabilities

Information is a key issue for people who use health services and their families and friends. In the UK, this was raised consistently by those involved in a national ‘listening exercise’, in 2005.1 The resulting White Paper Our Health, Our Care Our Say2 reinforced much of the government information strategy published in the previous year.3 The Brain and Spine Foundation is a UK-based charity that aims to improve the quality of life for people with neurological conditions (http://www.brainandspine.org.uk). The organization was awarded a grant by the Department of Health to produce a toolkit to help health and social care professionals providing information to people affected by neurological conditions. The project forms part of the implementation of The National Service Framework (NSF) for Long-term Conditions, published last year.4 The toolkit is being developed in association with the Neurological Alliance (http://www.neural.org.uk) and the Long-term Medical Conditions Alliance (LMCA; http://www.LMCA.org.uk). A series of small discussion groups were held last year throughout England and Wales to explore: (i) current obstacles in the provision of and access to information, (ii) how a toolkit might be used and (iii) to refine the toolkit's content and shape. Discussions were held with groups of people affected by neurological conditions, with voluntary sector organizations concerned with neurological conditions and with mixed groups of health and social care professionals from a variety of settings. In addition, a questionnaire survey of health and social care professionals was conducted. Care for people with neurological conditions in the UK has been very patchy. While there are some world-class centres of expertise, there are also areas of the country where there is little specialist provision.5 Traditionally, for people with neurological conditions, the majority of input has been provided by specialists (e.g. neurologists and rehabilitation consultants). However, because of shortages in these workforces, and the long-term nature of many of the conditions, people have often been left without specialist support. Access to information has become a major issue for these people who may have little contact with health and social care professionals after initial diagnosis of their condition. This is consistently reported both by individuals affected by neurological conditions as well as organizations representing them.5 A key issue explored in developing the toolkit relates to why people do not get the information they want, despite much information apparently being available, and from a proliferation of sources. Two explanations were found. First, information provided by health professionals does not always match with the information sought after by people with neurological, and other long-term conditions. Secondly, people often want very local information, whereas what is generally available is not specific to their geographical location or situation. These issues are explored further below. Another issue that became evident was that health and social care professionals did not always recognize their role in relation to providing information to people with whom they came into contact. There is a need to encourage health-care professionals to view every consultation as an opportunity to assess information needs and ensure that these are met directly or by referral to a dependable alternative source. The toolkit will, therefore, aim to signpost to sources of information on the issues of concern to people with neurological conditions. It was found that there are four key areas consistently identified by people affected by neurological conditions where they want more information. Interestingly, the groups of health and social care professionals consulted also identified these issues as a problem area for information giving. The lack of information related to benefits, employment and finance was an issue raised repeatedly by people with neurological conditions when they discussed information. When asked what information requests they found difficult to address, health professionals also identified information about benefits. This is not a new issue and surveys from the neurological charities have been reporting this for years.6 It is possible that the reason this issue has not been addressed is that health professionals do not see such issues as within their remit. These ‘social care issues’ are often seen as being the province of those working outside health-care settings. There may be a tendency to see people with a diagnosis of a long-term condition as having a continuum of needs; starting with medical needs, and medical information needs, at the diagnostic phase and progressing to ‘social’ needs later on as someone adapts to their illness or disability, and particularly if it progresses/degenerates. However, when people with neurological conditions talk about their information needs, it is clear that some of their first concerns on diagnosis are their employment and financial status –Should I go back to work tomorrow? What should I tell my employer? If I leave work how will I support myself and my family? What support will my partner get if they need to look after me? Should I move house? The health professional is more likely at this time to be focused on providing information about possible treatment options or a drug regime. Concerns about sex and relationship issues were often raised (even in focus groups where people who did not know each other). People had found information on sources of support very hard to access. Health and social care professionals were similarly at a loss to know where to go for such information. There seemed to be a tendency to hope the questions were not asked and very few health-care professionals said that they would ever raise the issue as they would not know how to deal with this or whom to refer to. This is a significant quality of life issue for people affected by many neurological, and other long-term conditions, including cancer. There is a need to address it and ensure that health and social care professionals are signposted to sources of information and advice. Complementary therapies have played a large part in the management of neurological conditions, partly because of the fact that there are often very few surgical or drug treatments available. Many health professionals find it difficult to provide information about treatments that they feel do not have a robust evidence base and that have not been traditionally available in the National Health Service (NHS). While for some conditions this is changing, it is likely that people with a life-long illness for which there is no cure will continue to seek both ‘wonder cures’ and palliative treatments. Using the toolkit health professionals will be able to signpost people to information about various complementary therapies and information about which therapies people with a similar condition have found helpful. This kind of information is often available through local and national voluntary sector organizations. Providing a diagnosis and prognosis is clearly within the domain of health-care professionals, yet all agree it is a difficult area to address. People affected by neurological conditions often report that they do not get adequate information about what to expect. Again this possibly stems from the fact that there was, and still is for many, very little that can be offered in the way of treatment and cure. Neurological conditions can also be very unpredictable. If health-care professionals view their domain as providing information about treatment options and medicines there may well be limited information they can give. There are, however, as outlined above, a range of other information needs that people with neurological conditions have at diagnosis. If these needs are addressed it is likely both that people would feel more able to manage their condition and also report that their information needs had been met. The information people often valued the most, and which they found hard to access, was about local services and sources of support. For example, people talked about finding someone who could help them fill in their benefit form, the local rehabilitation service that accepted self-referrals, the MS support group that met two streets away, yet had taken 18 months to discover. Addressing local information presents a challenge for a toolkit that has been designed for health and social care professionals across England and which will necessarily be focused at a countrywide level. As noted above, however, this is a crucial finding of the work conducted with people affected by neurological conditions. Those working on the Better Information3 strategy also identified the need for local information and the Department of Health has recently announced their intention to pilot a local integrated approach to information in order that local health and social care organizations jointly maintain an accessible database of all services and support groups in their local area.2 The project will provide a template for local information in the toolkit outlining what information should be available, based on issues that people affected by neurological conditions have raised as information needs, and indicating possible local sources of information and support locally. The ground work will necessarily be conducted at a local level, but it is hoped by providing a template and sources list we will avert excessive duplication of effort, whilst ensuring that the content of local directories and databases are focused on the needs of people affected by neurological conditions. In addition, it will be very important to ensure local voluntary organizations supporting and representing people with neurological conditions are involved in commissioning local information databases. This will be essential; to ensure firstly that the resource is focused on local needs; secondly, that the very valuable services and support provided by voluntary sector groups are included and thirdly, because of the local knowledge they have about sources of health and social care support in its widest sense. Often, during the discussions with people affected by neurological conditions, they talked about eventually tracking down the information, or service or person, through contact with a local support group or voluntary organization. For example, if you wanted to know who could help you fill out a benefit form, how to get a wheelchair, where to get hydrotherapy, who to talk to about a relationship problem the local branch of the Parkinson's Disease Society or MS Society would be a very good starting point. At national level, voluntary sector organizations produce the information often reported to be the most useful by people affected by neurological conditions. Most include in their information portfolios fact sheets and booklets about the issues raised above (complementary therapies, sex and relationships, prognosis, benefits) and about many other aspects of living with a neurological condition. There is reluctance, however, amongst health and social care professionals to provide information about these organizations to people affected by neurological conditions. A survey by the Motor Neurone Disease Association7 in 2002 found that 44% of people diagnosed with motor neurone disease that year had not been told of the Association or given contact details. In the discussions to develop the toolkit people often reported stumbling on a local or national voluntary organization ‘by accident’. The toolkit will need to make it easier for health professionals to signpost to these sources of information and support. Health professionals may feel better assured about directing people to voluntary sector sources of information if they could guarantee the quality. The Department of Health have also recently announced the intention to develop an Information Accreditation Scheme (IAS).3 It will be very important that voluntary sector providers of information are enabled to participate in this scheme in order that they can continue to disseminate the information that people affected by neurological, and other long-term conditions find so useful. A pilot version of the toolkit is currently being produced. This will be a signposting tool with generic checklists and templates. It is anticipated there will be a launch towards the end of 2006. Nikki Joule is an independent health policy consultant and Project Officer at the Brain and Spine Foundation (http://www.brainandspine.org.uk). She is also on the Steering Group of the Patient Information Forum (http://www.pifonline.org.uk).

The authors compared the type and number of life events experienced by 19 mentally retarded patients and 19 nonretarded control subjects in the month before their admission to the same unit of a state mental hospital. The retarded patients had exhibited fewer changes in eating and other personal habits. On admission they presented fewer signs of intrapsychic disturbance but more of self-destruction or aggression. These results imply that clinicians need specific training to diagnose and treat psychiatric disorders in the mentally retarded patients who now use community mental health facilities, because their presentations may be atypical.

Be a Fan. You see that on Special Olympics literature, websites, and paraphernalia. More than a mere slogan, Be a Fan is part of a belief system that values people with intellectual disability for their gifts and talents, their abilities and humanity. I am a Special Olympics volunteer. Like approximately 550,000 people in the United States and 850,000 internationally (Andrea Cahn, personal communication, October 14, 2010), I give a small bit of my time, talent, and treasure to Special Olympics as Senior Advisor to the Chairman and CEO. No, I am not out there coaching or training athletes or refereeing events, that is just not something where I have anything to offer. I am participating in discussions, reviewing or drafting the occasional document, and responding to ideas and issues impacting the inclusion and full citizenship of people with intellectual disability, something I have been doing for most of my adult life. I hope my very small contribution to Special Olympics is helping the movement towards the goals of full citizenship, community membership, and respect for all people with intellectual disability. Movements and organizations, like people, grow and change. I am writing this article because, as the world for people with intellectual and developmental disabilities continues to change and evolve, I think those who have advocated for community inclusion and participation have an ally, one we have failed to recognize, and with gifts and talents we have ignored, one we need to take seriously, and one who many of us shunned in the past. Special Olympics is a program we need now perhaps more than ever.

Adults with intellectual disabilities are not often asked to participate in health research. This may be because researchers perceive them as unable to participate meaningfully with or without significant support and anticipate difficulty in obtaining ethical approval because of issues concerning consent and mental capacity. This means that the voices of adults with intellectual disabilities are often missing from health research and their experiences and views are unexplored. To share successful strategies for accessing, recruiting and collecting data from a purposive sample of adults with intellectual disabilities from a study that used interpretative phenomenological analysis (IPA). IPA is a person-centred, flexible and creative approach to research. Meaningful collaboration with people with intellectual disabilities, their families, carers, advocacy group managers, specialists in intellectual disability services and research supervisors was vital to the success of the study. The authors share practical strategies for including people with intellectual disabilities, from the perspective of a novice researcher who is an outsider to the field of intellectual disability. It is important to include people with intellectual disabilities in healthcare research. This article presents a framework to support researchers outside the specialist field of intellectual disabilities in achieving this. Personal views and perceptions of healthcare are important if health services are to meet individual needs. Adults with intellectual disabilities often receive poor healthcare and have poorer outcomes. This will be perpetuated without their input into research. People with intellectual disabilities can make valuable contributions to the evidence base.