Visibility, Contact and Market-Competence: Keys to the Inclusion of People With Intellectual Disabilities in the Lebanese Workplace

On behalf of the Conference Planning Committee, it is my sincere pleasure to welcome you to the "Queen City," Charlotte, North Carolina, and the American Association on Intellectual and Developmental Disabilities (AAIDD) 136th Annual Meeting. The theme of this year's conference is research, practice, policy—and there's no better setting for such a conference than the Carolinas! This year's AAIDD annual conference promises to be a forum where researchers, clinicians, practitioners, educators, policymakers, and advocates will be able to share cutting-edge research, effective practices, and valuable information on important policy initiatives.I want to start my presidential address by thanking all the attendees for joining us for the AAIDD 136th Annual Meeting. This conference could not be the success it is without your presence and participation. I also want to thank all our colleagues from across the United States and the world who traveled to Charlotte to present their work and share their ideas and findings with us. I'll come back to this point in a minute. I would be remise if I did not acknowledge the important contribution to the success of this meeting of all those who provided their time and wisdom on the Conference Planning Committee and the Local Arrangements Committee as well as the large group of volunteers, and of course none of this could happen without the diligent work of the AAIDD staff and Dr. Maggie Nygren, AAIDD executive director and CEO. Please join me in thanking all these individuals in making this annual meeting the success that it is.This year's annual meeting was preceded by a series of exciting and stimulating preconference workshops on topics ranging from findings from the AAIDD Cuba Delegation, the National Task Group on Dementia, DirectCourse's Comprehensive Competency-Based Training Approach, Supports Intensity Scale and Individual Support Planning, and Ethical Issues for Psychologists.We opened our conference with a blue-ribbon plenary panel on research, practice, and policy in the area of autism spectrum disorders. We heard three fantastic presentations from Drs. Joe Piven (University of North Carolina), Connie Kasari (University of California–Los Angeles), and Susan L. Parish (Brandeis University). The opening plenary was an excellent example of the richness and importance of research, intervention, and policy issues and their interplay in the area of autism spectrum disorders. Our other panel presentation had a distinguished group of federal partners, including Drs. Melissa Parisi (Eunice Kennedy Shriver National Institute of Child Health and Human Development; NICHD), Gloria Krahn (National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention; NCBDD CDC), and George Jesien (Association of University Centers on Disabilities). This illustrious federal panel discussed the importance and role played by these agencies in supporting research and practice as well as the importance of policy matters in continued funding of these programs in the area of intellectual and developmental disabilities.Our biggest challenge this year in organizing the conference was reviewing and evaluating the great number of high-quality proposals submitted. We received almost 300 proposal submissions from across the United States and more than a dozen countries around the world. The conference was rich with 24 break-out panel presentations on topics including aging, health, employment, quality of life, transition, cross-cultural issues, end-of-life, forensic, supports, direct support workforce, inclusion, systems change, self-advocacy, spirituality, parenting, funding issues, and postsecondary education. In addition to these rich break-out sessions, we had more than 150 stimulating poster presentations from students, recent graduates, early careers professionals, established professionals, and researchers from around the world.Today and tomorrow, our conference wraps with a series of postconference workshops that will offer continuing education units on a variety of topics, including writing for publication, lessons learned from states using the Supports Intensity Scale, assessment of intellectual disability in capital cases, religion and spirituality, positive behavior supports, trauma-informed care, and dysphagia. These workshops offer some very practical hands-on training from highly respected and skills practitioners. I trust many of you will be taking advantage of these workshops before heading home.This year's conference theme was selected to highlight and remind us of the importance of interdisciplinary and interprofessional collaboration for the field of intellectual and developmental disabilities. Our field has had many accomplishments in research, intervention, and policy that have had significant impacts on improving the lives and outcome for persons with intellectual and developmental disabilities (IDD) and their families.Many years ago, a Norwegian physician by the name of Dr. Asbjorn Folling discovered that a group of individuals with intellectual disability had particular characteristics, and this led to his discovery that these individuals all had inherited a recessive gene that resulted in their bodies' inability to break down an amino acid called phenylalanine. The condition, called phenylketonuria (PKU), if undetected, would result in a build-up of phenylalanine to toxic levels in the individual's central nervous system, resulting in severe cognitive impairments. A relatively simple treatment consisting of a strict diet that eliminates all foods high in protein, which are rich in phenylananine, eliminated the devastating effects of PKU on infant brain development. Infant screening for PKU commenced as early as the 1960s, resulting in the identification and treatment of PKU and thus preventing thousands of children from developing intellectual disability.We should also not forget that the benefits yielded from the work done in our field reach beyond persons with IDD.Another important area of work stimulated by a practitioner in the field of intellectual disability is early childhood education. This was Dr. Maria Montessori, an Italian physician who worked with young children with intellectual disability. Maria Montessori had been influenced by the work of a couple of giants in the field of intellectual disability, including Jean Itard and Edouard Séguin. The Montessori Method stresses the development of initiative and self-reliance by permitting children to do by themselves the things that interest them—self-paced learning under the guidance of a teacher. Montessori's work led to significant gains in learning in children previously thought to have little potential because of their intellectual disability. The Montessori Method demonstrated that this structured learning method and environment can have important beneficial results in children with cognitive delays but also in typically developing children. Today, Maria Montessori's educational approach is used around the world and has become a highly coveted educational strategy used with children of all intellectual abilities.A final example of the richness of the work done in our field is in the area of applied behavior analysis and positive behavior supports. The science of using principles of behavior analysis to understand the function of behavior to promote learning and behavior change has been a critical part of intervention strategies in the field of intellectual and developmental disabilities for decades. We have used the science of applied behavior analysis and, more recently, positive behavior supports to teach new skills, promote pro-social behavior, and understand and reduce problem behavior. These approaches have been instrumental in our field of early intervention to promote inclusion, supported employment, and supported living, to name a few examples. These techniques are being used in all realms of daily life, including and increasingly with people without special needs. More and more preschool programs and school districts have adopted positive behavior support strategies to promote pro-social behaviors and the prevention of all forms of less desirable behaviors such as bullying, disrespectful behavior, aggression, and so forth.So we can see how research and practitioners play key interactive roles in promoting improved research and intervention for persons with IDD. And, at times, these methods also have applications for everyone. Public policy and legislation also play a key role in research and intervention for people with IDD. We, at times, did not appreciate the important role research and intervention findings play in crafting and influencing policies. Their interrelatedness cannot and should not be understated. I want to name but a few important policies that have played a key role in promoting services, programs, and research for persons with IDD. Early in the 1960s the Kennedy administration created important legislation now called the Developmental Disabilities and Bill of Rights Act (DD Act). The DD Act led to the creation of the University Centers for Excellence in Developmental Disabilities, DD planning Councils, and Protection and Advocacy Agencies in every state. During this same period we saw policy work that led to the creation of the National Institute on Child and Human Development (NICHD), which has been an important source of research funding for the field of intellectual and developmental disabilities, including the IDD research centers. Other important legislation for our field has included the Individual with Disabilities Education Act (IDEA), Combating Autism Act, and also Rose's Law. Rose's Law is an interesting piece of legislation but important because it resulted in the removal of stigmatizing language such as "mental retardation" from federal laws, replacing it with "intellectual disability." This aforementioned list is far from comprehensive. We have had a century of ground-breaking policy changes that have illustrated the work between policymakers, stakeholders, practitioners, and researchers. I selected these to make a point—not to identify them as more important than others not mentioned. Suffice it to say, policy, practice, and research are intertwined and interdependent, perhaps more than many really appreciate or admit.Founded in 1876, the American Association on Intellectual and Developmental Disabilities is the oldest professional association concerned with intellectual and developmental disabilities. I am truly honored to have the privilege to serve as president for 2012–2013. We have a great group of board members, a dedicated staff, and a very dynamic executive director/CEO. Despite these difficult economic times, our association is in good financial health. An exciting characteristic of our association that strikes me as indicative of the strength of our membership and leadership is the products that we continue to develop and deliver to the field. The credit for all this is a shared one. It is shared among our board members, our executive director/CEO, the staff in the national office, and especially you! All of our key products (e.g., the terminology and classification manual and user's guide, Positive Behavior Supports Training Curriculum, Supports Intensity Scale, annual meeting—yes, I include this as one of our key products—Good Blood, Bad Blood, online courses, and webinars) are largely the result of the hard work and brain power of our members.I have three basic priorities that I have set for my presidency. Following are my priorities—not necessarily in order of importance.The major functions of AAIDD are to:There are several factors that establish AAIDD as the best place for cutting-edge research, tools, and materials that inform IDD policy and practice. AAIDD has a long history in publishing some of the field's best journals, including Intellectual and Developmental Disabilities as one of the field's leading practice journals and the American Journal on Intellectual and Developmental Disabilities as the oldest and more respected research journal. This is the professional home for thousands of interdisciplinary practitioners, researchers, and leaders within the field of intellectual and developmental disabilities. Whether mentioned in legislation, the U.S. Supreme Court, or among stakeholders, families, or colleagues, AAIDD is seen as the authoritative organization on matters related to IDD. We must keep our focus on evidence-based and data-driven product development and ensure that we, as an organization, continue to deliver high-quality tools and materials that are needed to advance the quality of supports, services, and knowledge.Our association can only sustain its leadership through succession planning and grooming the next generation of educators, researchers, leaders, policymakers, practitioners, and so forth. We must make every effort to include students and early career professionals on our association task forces, committees, and work groups. The vitality of our association can only be ensured by the inclusion of senior leaders and more junior rising stars among our membership. This is a win–win proposal that will benefit all and promote high-quality work and outcome.I am committed to continuing the great work of the last several AAIDD presidents in supporting the students and early career professionals who have recently formed their own special interest group. Below are some suggestions of ways you and I can support AAIDD students or early career professionals:Please e-mail me any suggestions or ideas you have to increase the participation and meaningful involvement of students and early career professionals in our association life and annual meetings.This priority is to make certain that we educate and guide the American Psychiatric Association (APA) as it continues its work in crafting the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Of particular concern is that the DSM-5 revisions of the condition formerly called "mental retardation" currently include APA's proposal to rename the condition "intellectual developmental disorder." As you know, there is a national consensus in the United States, including federal legislation, to replace "mental retardation" with "intellectual disability."In addition to proposing a radically different terminology that lacks all support from the field of intellectual disability, the current version of the DSM-5 diagnostic criteria are the following: (a) significant deficits in intellectual functioning–profile of cognitive abilities; (b) significant deficits in adaptive behavior including daily life, communication, social participation, functioning at school and work, personal independence at home and in community where these limitations result in a need for ongoing support at school, work, or independent life; and (c) that these significant deficits originate during the developmental period.The adoption of a different terminology and the proposed DSM-5 diagnostic criteria are fraught with the potential to harm people with intellectual disability and their families. In a June 14 letter to the APA and the DSM-5 Neurodevelopmental Disorders work group cochairs, AAIDD wrote a detailed letter expressing our concerns and making clear suggested changes. AAIDD's concern regarding the DSM-5 proposal to adopt "intellectual developmental disorder" is that it is regressive and divergent with the currently accepted terminology of "intellectual disability." We have in the United States legislation called Rose's Law that was signed by President Obama that has replaced "mental retardation" with "intellectual disability" in federal law. All professional and disability organizations have adopted "intellectual disability." The DSM-5 adopting a different terminology will lead to confusion, inconsistency, and will hurt people with intellectual disability and their families. Adopting a different terminology, accepted by no one else, could affect federal and state determination of eligibility for benefits and services in schools, social security insurance, Home and Community Based Services (HCBS) waivers, as well as research communication and evaluations in the forensic arena, including capital cases.Other concerns include that the lack of an operational definition of the age of onset could potentially lead to different determinations of the age cutoff across states or even between state agencies. We also suggested the APA make more systematic their definition of adaptive behavior as being represented by conceptual, practical, and social skills. Finally, we cautioned the DSM-5 against deemphasizing individualized standardized testing in favor of clinical assessment and recommended APA strengthen the language regarding measurement error.I want to draw your attention to this important matter and encourage you to familiarize yourself with the AAIDD concerns with the DSM-5 proposal. We also applaud our colleagues in other national and international organizations who have endorsed the AAIDD position, including The Arc [of the United States], Special Olympics International, Inclusion International, American Psychological Association–Division 33, and American Academy of Developmental Medicine and Dentistry. We expect other groups to continue adopting our letter as a model in communicating their concerns to the DSM-5 work group. We should all be extremely concerned about the current direction being taken by the DSM-5.In closing my presidential address, I want to thank you again for joining us in Charlotte for the 136th AAIDD Annual Meeting and for choosing to be a member of AAIDD. I hope to see many of you next year in Pittsburgh, Pennsylvania. Do not hesitate to contact me should you have any questions, concerns, suggestions, and ideas how we can further advance the mission of our association, and let me know how you can become involved in strengthening AAIDD! Thank you.My thanks to the Conference Planning Committee: Lynn Ahlgrim-Delzell, Giulia Balboni, Britt Butler, Melissa DiSipio, Celia Feinstein, Judith Gross, Aaron Kaat, Yves Lachapelle, Laura Lee McIntyre, Loui Lord Nelson, Maggie Nygren, Joanna Pierson, Holly Riddle, Geronimo Robinson, David Rotholz, Peter Smith, Jim Thompson, and Miguel Verdugo; and the Local Arrangements Committee: Lynn Alhgrim-Delzell (co-chair), Holly Riddle (co-chair), Barbara Agnello, Greg Best, Kelly Bohlander, Davan Cloninger, Barton Cutter, Jody Deacon, Kira Fisher, Monica Foster, Melissa Hudson, Kelly Kazukauskas, Angela Lee, Judy Lewis, Mike Mayer, Andrea Misenheimer, Lauren Mullis Borchert, Greg Olley, Scott Paul, Pat Porter, Genny Pugh, Rod Realon, Ron Reeve, David Rotholz, and Deborah Whitfield.

Entirely revised and updated, this edition of a very well-received and successful book provides the essentials for all those involved in the fields of intellectual, developmental and learning disabilities and mental retardation, drawing both on clinical experience and the latest research findings. An international, multidisciplinary team of experts cover the available literature in full and bring together the most relevant and useful information on mental health and behavioural problems of people with intellectual, developmental and learning disabilities and mental retardation. In addition, this book highlights the principles behind clinical practice for assessment, management and services. It offers hands-on, practical advice for psychiatrists, psychologists, nurses, therapists, social workers, managers and service providers

There has been an increased awareness in the diagnosis of mental disorders in people with intellectual disability (ID). The evidence base has demonstrated that people with ID can display the same mental disorders as the general population and that the prevalence of such disorders varies according to the methods used for their assessment and diagnosis. The diagnosis of mental disorders in people with ID is a highly complex process mostly because of the difficulty or inability of some people with ID to express their feelings and symptoms. Hence, many of the diagnostic criteria for mental disorders used in the general population needed to be modified and adapted for people with ID.The National Association for Persons with Developmental Disabilities and Mental Health Needs (NADD) has been among the leading organizations in the U.S. and internationally in providing educational and training programs, support for research projects, and publicizing important clinical and policy issues regarding people with mental disorders and ID.In 2007, the NADD published the Diagnostic Manual – Intellectual Disability (DM–ID; Fletcher, Loschen, Stavrakaki, & First, 2007) as a companion to the American Psychiatric Association's (APA; 2000) manual for psychiatric diagnosis (i.e., the DSM-IV-TR) to assist clinicians in making more accurate diagnoses for people with ID. Approximately ten years later, with the APA's (2013) publication of their updated manual (i.e., the DSM-5), the NADD published the Diagnostic Manual – Intellectual Disability (DM-ID 2): Textbook of Diagnosis of Mental Disorders in Persons with Intellectual Disability (DM-ID 2: Fletcher, Barnhill, & Cooper, 2017) for people with ID, having taken into consideration the changes introduced by the DSM-5.The editors of the DM-ID 2 stated that their book is designed to provide state-of-the-art knowledge of mental disorders for people with ID. The DM-ID 2 was compiled by "a multicentered, multicultural, and multifaceted" (p. 9) collaboration of over 100 clinicians, researchers, and practitioners with expertise in mental disorders and ID who worked in 26 working groups over a period of four years. A chairperson was assigned for each working group. A summary of the main points of the DM-ID 2 has also been published separately (Fletcher, Barnhill, McCarthy, & Strydom, 2016).The DM-ID 2 consists of 27 chapters covering the main psychiatric diagnostic categories that correspond closely to the DSM-5 classification system, with modifications to make them more applicable to people with ID. Chapter 1 describes the most commonly used assessment and diagnostic methods "to assist the reader in understanding the biopsychosocial developmental approach when conducting a psychiatric assessment" with people with ID. Chapter 2 describes "behavioral phenotypes that are associated with genetic disorders, which is intended to aid in the understanding of how a disorder's genotype affects its behavioral phenotype". Both chapters 1 and 2 are informative and comprehensive and present an added value to the publication of the DM-ID 2.The authors of the DM-ID-2 relied upon an expert consensus model in much of their work to overcome the poverty of existing relevant research in the field. Each chapter is based on a systematic critical review of the available literature and follows guidelines for clarity and uniformity.The principal elements of the guidelines for the structure of each chapter include both organizational and conceptual elements (e.g., chapter summary, review of diagnostic criteria, general description of the disorder, summary of DSM-5 criteria, diagnosis in people with ID, comorbidity, application of diagnostic criteria to people with ID, etc.)Variations of the suggested guidelines are evident in several chapters of the DM-ID 2, probably due to the different prevalence of mental disorders in people with ID. Therefore, all of the guidelines were not applicable to all mental disorders. All chapters consist of three main parts: (1) summary of the DSM-5 criteria, (2) review of the literature, and (3) suggestions for applying criteria for people with mild/moderate ID and severe/profound ID.There are important changes in the DSM-5 reflecting developments in research of genetics and neuroimaging, and there is a revised organizational structure, taking into consideration that mental disorders do not always fit entirely within the boundaries of a single disorder, but that some symptoms involve multiple diagnostic categories. The changes in DSM-5 relevant to people with ID include a lifespan approach and the abandonment of the multi-axial method. Other important changes in the DSM-5, that have been adopted for the DM-ID-2, include the amalgamation of autistic disorder, Asperger's syndrome, and pervasive developmental disorder, into one diagnostic category - Autism Spectrum Disorder (ASD). Reactive attachment disorder, disinhibited social engagement disorder, posttraumatic stress disorder (PTSD), acute stress disorder, and adjustment disorder have been combined in the DSM-5 under the diagnostic category trauma- and stressor-related disorders that has also been adopted by the DM-ID 2. Disorders previously referred to as "dementias" are now designated as major or mild neurocognitive disorders by both the DSM-5 and DM-ID 2.A critical change in DSM-5 is that intellectual disability (ID) is included as "a discrete syndrome" with the term Intellectual Development Disorder (IDD) within the diagnostic category of Neurodevelopmental Disorders. The DM-ID 2 adopts the term IDD (in the disability field this abbreviation stands for intellectual and developmental disabilities) but makes a central point that IDD can coexist with other mental disorders. This emphasis of the coexistence of IDD with other mental disorders is an important distinction of the DM-ID 2 from DSM-5, where IDD is frequently an exclusion criterion from the diagnosis of other mental disorders.The inclusion of IDD as a separate category, under the neurodevelopmental disorders of the DSM-5, to affirm that it is a health condition, remains controversial (Bertelli, Salvador-Carulla, & Harris, 2016). The American Association for Intellectual and Developmental Disorders (AAIDD) defines ID as a "disability" and not as a "health condition." The AAIDD definition states that ID is "characterized by significant limitations, both in intellectual functioning and adaptive behavior as expressed in conceptual, social, and practical adaptive skills," and that the disability originates before age 18. (Schalock et al., 2010, p. 1).Another important change in the DSM-5 for the diagnosis of IDD is that it shifts the emphasis from IQ scores to the necessity that the onset should occur "during the developmental period and to include both intellectual and adaptive functioning deficits in conceptual, social and practical domains" (American Psychiatric Association, 2013, p. 33).The DM-ID 2 retains IDD as a separate diagnosis, and in Chapter 4, the complex conceptual issues involved with the diagnostic criteria of Neurodevelopmental Disorders. These issues include a number of overlapping symptoms from other, co-existing, neurodevelopmental syndromes or/and other mental disorders. DM-ID 2 allows some flexibility by stating that clinicians will have to judge how best to modify inclusion, specifiers, and exclusion criteria to apply these diagnostic criteria to people with IDD.Additional changes in the diagnostic criteria covered in the DSM-5 and adopted by DM-ID-2 include the exclusion of Attention Deficit Hyperactivity Disorder (ADHD) from Autism Spectrum Disorder (ASD); the realignment of impulse control and disruptive behavior disorders to the category of Disruptive Mood Dysregulation Disorder (DMD) for people with affect dysregulation and ADHD (previously diagnosed as bipolar disorder) and the creation of trauma- and stressor-related disorders.The DSM-5 diagnostic criteria for major neurocognitive disorder and mild neurocognitive disorder to aid in the diagnosis of dementia have also been modified for people with ID in the DM-ID 2, but some caution is given for the validity of mild neurocognitive disorder in people with ID.The DM-ID 2 aims to assist in the diagnosis of mental disorders for people with ID based on adaptation and modification of the diagnostic criteria of the DSM-5. It is written in a well-organized and methodological style in a field characterized by very difficult and complex issues and concepts. Individual chapters include wide-ranging discussions based on a systematic review of the literature and the extant research evidence on mental disorders among people with ID to support the suggested adaptive diagnostic criteria for people with ID. The term IDD as used in the DSM-5, has been adopted by the DM-ID 2 throughout the publication. The process of developing the DM-ID 2 does not include field trials and does not mention the association with the APA, as was the case with the development of the DM-ID.The acceptance of a psychiatric diagnosis and classification for those with mental disorders, including for people with IDD, serves several purposes, including "medical record keeping, data collection, retrieval and compilation of statistical information, communicating with third parties, such as insurers and governmental agencies, and is the basis for eligibility and reimbursement for psychiatric services" (Sturmey, 1999, p. 4). Standardized diagnosis can also serve as the basis for communication between different professional groups and non-professionals as well as in research contexts. Diagnosis also serves the purpose of providing a summary for multiple presenting symptoms, etiology, and prognosis, and can inform therapeutic interventions. The provision of mental health services for those with ID has undergone profound transformations since the implementation of community care programs (Bouras, Ikkos, & Craig, 2017). Accurate diagnosis is of utmost importance for planning, provision, and delivery of services, monitoring, and evaluation (Bouras, 2017).The publication of the DM-ID 2 is an important resource toward advancing our knowledge of mental disorders in people with ID. Discussion on the relationship of problem behavior known as "challenging behavior" not included in the DSM-5, would have been helpful in the DM-ID 2. The value of the DM-ID 2 remains to be confirmed in clinical practice and research studies that apply the suggested diagnostic criteria. In the future, the publication of an "operational guide" for the DM-ID 2 will serve as a user-friendly tool facilitating diagnosis and treatment for people with ID and mental disorders.

To evaluate outcomes after major surgery in children and adolescents with intellectual disability. We used 2004 to 2013 claims data from Taiwan's National Health Insurance programme to conduct a nested cohort study, which included 220292 surgical patients aged 6 to 17years. A propensity score matching procedure was used to select 2173 children with intellectual disability and 21730 children without intellectual disability for comparison. Logistic regression was used to calculate the adjusted odds ratios (ORs) and 95% confidence intervals (CIs) of the postoperative complications and 30-day mortality associated with intellectual disability. Children with intellectual disability had a higher risk of postoperative pneumonia (OR 2.16, 95% CI 1.48-3.15; p<0.001), sepsis (OR 1.67, 95% CI 1.28-2.18; p<0.001), and 30-day mortality (OR 2.04, 95% CI 1.05-3.93; p=0.013) compared with children without intellectual disability. Children with intellectual disability also had longer lengths of hospital stay (p<0.001) and higher medical expenditure (p<0.001) when compared with children with no intellectual disability. Children with intellectual disability experienced more complications and higher 30-day mortality after surgery when compared with children without intellectual disability. There is an urgent need to revise the protocols for the perioperative care of this specific population. Surgical patients with intellectual disability are at increased risk of postoperative pneumonia, sepsis, and 30-day mortality. Intellectual disability is associated with higher medical expenditure and increased length of stay in hospital after surgical procedures. The influence of intellectual disability on postoperative outcomes is consistent in both sexes and those aged 10 to 17 years. Low income and a history of fractures significantly impacts postoperative adverse events for patients with intellectual disability.

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

This chapter discusses key information about the psychiatry of intellectual disability (ID). It is focused on the mental health needs of people with intellectual disability. The terms used to describe intellectual (learning) disability are reviewed together with the concept of intellectual developmental disorders (IDD)—a concept of neuro-developmental disorders with global impairment in general intellectual functioning including planning, judgement, learning, and abstract thinking. People with ID present with physical and mental illness, and it is important to be aware of the impact of ID on these presentations. Key topics include: • What is meant by ID. • Causes and co-morbidities of ID. • The impact ID may have on presentations of mental and physical illness. • How to identify and manage challenging behaviours. • Principles of intervention in ID. Practical tips include: • Key items to consider in deterioration of behaviour. • Strategies for the management of challenging behaviour. • Key behaviours (and pitfalls) in assessment in ID.

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.

Objectives:There are few studies on epilepsy and psychopathology in people with intellectual disability (mental retardation) despite epilepsy prevalence rates that are thirty times higher than in the general population. The...

Accessible summaryPeople with intellectual disability have multiple health problems.People with intellectual disability have more physical and mental health conditions than people without intellectual disabilities.People with intellectual disability may need more health checks due to increased prevalence of physical and mental illnesses.More studies are needed to understand what interventions are effective to reduce health problems in people with intellectual disability.AbstractBackgroundStudies have reported increased prevalence of physical and mental health conditions in people with intellectual disabilities (ID) compared to people without intellectual disabilities. However, there are no studies looking into specific health conditions at a national level and comparing with areas that are socio‐economically disadvantaged (e.g. low income and low education attainment). This study examines and compares the prevalence of physical and mental health morbidity in people with and without intellectual disabilities at a local and national level in the UK.MethodThis study was an anecdotal analysis of physical and mental health data and annual health check‐up for England (national), London (regional) and Haringey (inner‐city borough of London) in 2016/17 using data from the NHS Digital database.ResultsPatterns of mental and physical conditions for people with and without intellectual disabilities were similar across Haringey, London and England data. Severe mental illness was more prevalent among people with intellectual disabilities compared to non‐intellectual disability peers. This further increased in the inner‐city London borough for the intellectual disability group. Certain physical health conditions were also more prevalent in people with intellectual disabilities. Certain activities such as monitoring blood pressure, recording body mass index and checking HbA1C were better in people with intellectual disabilities. Uptake of annual health checks for people with intellectual disabilities remained around 50%.DiscussionThis study further highlights the increased prevalence of mental and physical disorders in people with intellectual disabilities compared to people without intellectual disabilities. Further increased risk of mental disorders in an inner London borough compared to national data aligns with existing literature that highlights the negative impact of socio‐economic deprivation on mental and physical health. Further studies are needed to assess the health and social care measures that can reduce the physical and mental health morbidity in people with intellectual disabilities.

Research round-up

Background: Despite the difficulties associated with establishing a diagnosis of a mental illness in persons with intellectual disability, most authors agree to say that those persons are at high risk of developing comorbid serious mental illness but the prevalence of psychiatric disorders in this population varies widely. The main reason for this variation lies in the difficulty to diagnose intellectual disability and psychiatric disorders at the same time. The aim of the present study is to investigate the association between severity of intellectual disability and prevalence of psychiatric and somatic disorders in an adult population with intellectual disability treated in the Psychiatric Unit of Mental Development (UPDM) in Geneva, Switzerland. Methods: The present study is based on the analysis of the medical record of all ambulatory patients of the UPDM treated in March 2008. This population presents at least a dual diagnosis of intellectual disability associated with psychiatric disorders. Results: Data show that 59.1% of the total sample has behavioural disorders and this percentage increases with severity of intellectual disability since it is higher in persons with severe and profound intellectual disability (79.7%). Furthermore, 48.2% of our sample has psychiatric disorders and this percentage is higher for persons with mild intellectual disability (59.5%). The most frequent psychiatric diagnosis associated to intellectual disability are pervasive developmental disorders (27.4%) and its prevalence is higher in the severe and profound intellectual disability level (66.1%), while schizophrenia and disorders of adult personality are significantly more frequent in the mild intellectual disability level (20.4% and 23.0% respectively). Furthermore, 31% of the sample have somatic disorders and its prevalence is higher in persons with severe and profound intellectual disability (55.9%). Considering the total prevalence of all diagnoses, our results reveal that 65% of our sample have more than a dual diagnosis and that this is more frequent in persons with severe and profound intellectual disability (84.7%) compared to persons with mild intellectual disability (54.8%). Conclusions: The total prevalence of all psychiatric disorders decreases with severity of intellectual disability. These data are consistent with other studies, which found a lower prevalence of psychiatric disorders in participants with severe and profound intellectual disability. Our results also reveal that the total prevalence of all diagnoses increases with severity of intellectual disability, which is consistent with the literature since some authors underline the presence of multiple pathologies associated with intellectual disability. In general, our results are encouraging and suggest a progress in defining more precise diagnostic methods.

AimsTo provide an overview of the Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) work to improve support for those with an intellectual or developmental disability.MethodsPeople with intellectual disability experience significantly higher rates of physical and mental health conditions in comparison to the general population. However, there can be multiple barriers to effective health care including, but not limited to, stigma and discrimination, the training of health professionals and a failure to consider the specific needs of people with intellectual disability in health and disability policy leading to deficits in funding to support generic services or develop specialist service models.In Australia, a Disability Royal Commission was established in 2019 in response to community concern about reports of violence against, and the neglect, abuse and exploitation of, people with disability. The RANZCP has provided information to the Royal Commission and appeared at a public hearing focused on the education and training of health professionals in relation to people with cognitive disability. In 2022, the RANZCP published new position statements on autism and intellectual disability to address the unmet needs faced by people with autism and intellectual disability and provide a foundation for future College advocacy for improving resourcing and mental health support for these groups.ResultsThe new RANZCP position statements on autism and intellectual disability make a number of systemic recommendations to address the mental health needs of autistic people and intellectual disability including:providing adequate funding to ensure appropriate policy implementationeducating and training health providers in the mental health needs of autistic people and people with intellectual disabilityincluding the voices of autistic people to support a more inclusive approach to policy development and service designcollecting data on the needs of people with intellectual disability who are living with mental health conditions to support better service planning and better health outcomes.In response to recommendations from the Disability Royal Commission, the RANZCP is also revising its training syllabus to include additional requirements for cognitive disability and has reviewed its CPD program to determine whether CPD for the provision of health care to people with intellectual disability should be enhanced.ConclusionThe RANZCP is committed to addressing the unmet mental health needs and significant challenges of people with autism and intellectual disability and advocating for improving resourcing and mental health support for these groups.

While it has been reported that the prevalence of mental illness is higher in homeless people than in the national population, few studies have investigated the prevalence of intellectual and developmental disability among the homeless. In this study, we conducted a survey to comprehensively assess these mental problems among homeless people in Nagoya, Japan. The subjects were 18 homeless men. Mental illness was diagnosed with semi-structured interviews conducted by psychiatrists. We used the Wechsler Adult Intelligence Scale III to diagnose intellectual disability. Discrepancies between Wechsler Adult Intelligence Scale III subtest scores were used as criteria for developmental disability. Eleven of the 18 participants were diagnosed with mental illness: six with mood disorder, two with psychotic disorder, and six with alcohol problems. The mean IQ of all subjects was 83.4 ± 27.4. The 95% confidence interval (CI) was 96.2-69.1. Seven participants were found to have intellectual disability. Three men showed discrepancies of more than 10 between subtest scores, and all of them were diagnosed with a mental illness. We divided the participants into four groups: those with mental illness only; those with intellectual disability only; those with both problems; and those without diagnosis. The men with intellectual disability only were significantly younger and had been homeless since a younger age than the other groups. Participants diagnosed with a mental illness had been homeless for longer than those without mental health problems. Although the sample size was limited, this study revealed the high prevalence of mental illness and intellectual disability, 61% (95%CI, 35-83%) and 39% (95%CI, 17-64%), respectively, in homeless people in Nagoya, Japan.

PART I: FOUNDATIONS.- Epidemiology and Etiology of Mental Retardation.- The Autism Spectrum.- Cerebral palsy.- Epilepsy in People with Mental Retardation.- Pediatric Brain Injury.- Behavioral Effects of Genetic Mental Retardation Disorders.- Social Acceptance and Attitude Change: Fifty Years of Research.- PART II: DISABILITY SERVICES.- Evaluating Developmental Disabilities Services.- Educational Service Interventions and Reforms.- Psychological Services for Older Adults with Intellectual Disabilities.- Residential and Day Services.- Behavioral-Clinical Consultation in the Developmental Disabilities: Contemporary and Emerging Roles.- Advocacy and Litigation in Professional Practice.- PART III: ASSESSMENT AND DIAGNOSIS.- Intellectual Assessment and Intellectual Disability.- Adaptive Behavior.- Psychosocial and Mental Status Assessment.- Functional Behavioral Assessment in Practice: Concepts and Applications.- Psychoeducational Assessment.- Developmental and Behavioral Screening.- Forensic and Psychosexual Assessment.- Family Assessment and Social Support.- PART IV: PREVENTION AND TREATMENT.- Science to Practice in Intellectual Disability: The Role of Empirically Supported Treatments.- Early Intervention: Background, Research Findings, and Future Directions.- The System of Early Intervention for Children with Developmental Disabilities: Current Status and Challenges for the Future.- Stereotypy, Self-injury, and Related Abnormal Repetitive Behaviors.- Psychopathology Among People with Developmental Delays - Assessment and Treatment.- Aggression in Persons with Intellectual Disabilities and Mental Disorders.- Speech and Language Deficits in Children with Developmental Disabilities.- Functional Skills Training for People with Intellectual and Developmental Disabilities.- Social Skills Training for Children with Intellectual Disabilities.- Vocational Skills and Performance.- Sex Offending Behavior.- Pharmacotherapy.- PART V: ETHICAL ISSUES.- Ethical Issues in Clinical Services and Research.- Ethics and Values in Behavioral Perspective.

Children with intellectual disability and specific learning disabilities often lack age-appropriate social skills, which disrupts their social functioning. Because of the limited effectiveness of classroom mainstreaming and social skills training for these children, it is important to explore alternative opportunities for social skill acquisition. Participation in social activities is positively related to children's social adjustment, but little is known about the benefits of activity participation for children with intellectual and specific learning disabilities. This study investigated the association between frequency and type of social activity participation and the social competence of 8-11-year-old children with intellectual disability (n = 40) and specific learning disabilities (n = 53), in comparison with typically developing peers (n = 24). More time involved in unstructured activities, but not structured activities, was associated with higher levels of social competence for all children. This association was strongest for children with intellectual disability, suggesting that participation in unstructured social activities was most beneficial for these children. Future research on the quality of involvement is necessary to further understand specific aspects of unstructured activities that might facilitate social development.