Designing user interfaces for content simplification aimed at people with cognitive impairments

Purpose. The main aim of the study was to examine the relationship between learning (intellectual) disability and interrogative suggestibility among children (11‐12 years old) and adults. Method. The Gudjonsson Suggestibility Scale (GSS 2) was administered to 110 children and 221 adults who were categorized into three groups according to fullscale IQ scores: (1) normal IQ (>75); (2) mild impairment (IQ score 55‐75); and (3) moderate impairment (IQ score <55). Results. Highly significant differences in memory and suggestibility emerged in both the child and adult samples across groups. Using memory as a covariate in the analysis eliminated the significant group differences for ‘yield 1’ among the children, but not for adults. There was no significant influence of memory on ‘shift’ in either group. Whereas ‘shift’ was significantly influenced by intellectual disability in children, no significant difference emerged across groups among adults. Conclusions. Children and adults with learning disability have much poorer memory and higher suggestibility scores than their contemporariesof normal intelligence. Differences in suggestibility are only partly explained by poorer memory scores. The findings reveal important differences between children and adults with intellectual disabilities. Children with learning disabilities are more susceptible to altering their answers under pressure than are adults with learning disabilities.

In 2004, when I first started to investigate the history of the learning disability construct, I quickly found that the available literature on the topic fell into two categories, valid historical scholarship and celebrationist narratives. There were a small number of serious historical works by Carrier (1983, 1986, 1987) and Franklin (1987, 1994), who examined the growth of the learning disability diagnosis as a political and scientific development over many decades.I framed my own research in the tradition of Franklin (1987, 1994) and Carrier (1983, 1986, 1987), upholding the standards of research methodology and critical analysis set by historians (e.g., Danto, 2008; McDowell, 2002). My goal has been to determine where this notion of learning disability came from and how it grew in the work of many scientists over time. I have assumed neither that learning disability is a correct way of understanding the learning difficulties of some children nor that this construct was built as some sort of farce. I view the construct as a historical product, an idea cultivated through scientific practices and theories over generations of research.My research efforts resulted in a book entitled The Incomplete Child: An Intellectual History of Learning Disabilities that chronicled the scientific ideas and practices that brought about the learning disability construct (Danforth, 2009). It is a story of multiple lines of intellectual traditions conflicting and melding, of pre-WWII German holistic science blending with Chicago School functionalism and the environmentalism of the Iowa Child Welfare Research Station.In addition, I have written a recent series of articles, including the Intellectual and Developmental Disabilities piece that I co-authored with Laura Slocum and Jennifer Dunkle. In these historical articles I addressed topics ranging from the pronounced social class bias of learning disability researchers of the 1960s and 1970s (Danforth, in press, a) to the 1970s epistemological shift toward objectivism (Danforth, in press, b).The Mather and Morris (2011) response paper belongs to the celebrationist category of historical writing that does not meet the standards of methodological rigor and critical analysis set by professional historians. This paper continues a professional line of insider accounts, self-congratulatory, poorly researched historical overviews written by special educators that celebrate the field and its pioneers (e.g., Cruickshank & Hallahan, 1981; Hallahan & Mercer, n.d.; Hallahan & Mock, 2003; Wiederholt, 1974). These works, although often informative, are overwhelmingly acritical. The authors fail to ask serious and troubling questions about the development of the field and the social impact of the ideas in the field. The purposes and the work in the field are lauded without the kind of rigorous scrutiny that historians apply to their subject matter.In their paper Mather and Morris's (2011) attempt to preserve "the legacy that Dr. Samuel A. Kirk left behind" (p. 118). Their primary goal is to perpetuate a purified narrative of a man living, thinking, and acting without contradictions and errors, without moral uncertainty and fallibility.The truth of the matter is that Sam Kirk was far from clear and definitive in his handling of the learning disability construct. In fact, he articulated 16 substantively different versions of the learning disability construct.I devote an entire chapter in my 2009 book to this issue. In this short rejoinder, I briefly illuminate Kirk's multiple contradictory articulations of the concept of learning disability between 1960 and 1984. Then I probe for possible lessons we might draw from Kirk's inconsistencies.In the course of my historical research, I examined every published work that Kirk ever authored or co-authored. Further, I conducted a thorough exploration of his archival materials—many boxes of personal papers such as letters, notes, unpublished presentations—stored at the University of Illinois, Urbana, which allowed me to gather many speeches to professional groups that were never published.Archival research is considered a foundational method of doing historical research. I note that Mather and Morris (2011) did not reference the extensive Kirk archives, suggesting that they took a highly problematic short-cut. I gathered documented records of 18 professional speeches and published writings in which Kirk offered a complete description of the learning disability concept between 1960 and 1984.In order to focus on the actual ideas used to build the learning disability construct, I have identified 15 separate conceptual components that Kirk used and reused over the years. Each component was a semantic building block, a single meaningful element that made a substantive contribution to the larger definition of the disorder.Table 1 presents the 15 conceptual components present in each of the 20 articles or speeches that Kirk made between 1960 and 1984. The components utilized in describing the learning disability concept are labeled with the letters A through O.Components A through C involved etiological theories that posited a causality for the learning difficulty.Components D through I were exclusionary factors, reasons for the learning difficulty that, if present, indicated that the problem was not a learning disability.Components J through N described the comorbidity of learning disability with other childhood disorders. J represents a high level of correlation between learning disability and emotional or behavioral disturbance, such that the two disorders were understood to be constitutionally linked. Components K through M indicate a co-occurrence of distinct disorders. Learning disability and each disorder could co-occur to create what Kirk called a "double handicap" (Kirk, 1967a), but the two impairments were framed as essentially unrelated.Component N involved Kirk's attempt to distinguish between levels of mental retardation in relationship to the learning disability diagnosis. Due to the general and total nature of the intellectual deficit, severe mental retardation was understood to be a disorder quite unlike a learning disability; but mild mental retardation, he sometimes claimed, proved to be only a learning disability concealed behind a diagnostic disguise. Proper educational treatment would bring to light the concealed mental assets, the hidden potentials, in order to demonstrate when mild mental retardation was actually a learning disability.O proposed that students with learning disabilities required a special education program consisting primarily of diagnostic–remedial instruction.Of the 18 complete articulations of the disorder, only two pairs (2, 3 and 15, 17) were completely consistent with one another. The record of complete conceptualizations consists of 16 distinct delineations of the disorder over 24 years. Simply put, Kirk devised 16 variations of the learning disability construct.As Kirk worked in the 1960s to promote acceptance of the new learning disability construct, he repeatedly tried to explain how it related to the older, more established, and greatly trusted classification of children with mental retardation. Kirk's seemingly endless struggle to make this relationship clear is a frustrating tale of theoretical ambiguities and rhetorical miss-steps.In early 1963, separated only by 3 months, Kirk delivered two remarkably different speeches. In January, he spoke to a small conference of brain injury researchers at the University of Illinois, a group that included Newell Kephart, Helmer Mykelbust, and Joseph Wepman. At the Chicago meeting of neurological scientists, he said that learning disability refers toIt was a disorder of the psychological processes with possible etiologies of neurological damage or emotional disturbance. Mental retardation was listed among the excluded conditions.Later in the same presentation, however, Kirk appeared to backtrack on this, stating that learning disability "does not refer to most mentally retarded children since the discrepancy between their ability and their achievement is not great" (Kirk, 1963a, pp. 49–50). His frequent use of the modifiers generalized and most muddied up his assertion that mental retardation was an exclusion.Latour and Woolgar (1979) called words such as these "grammatical modalities" that operate as "an expression of the weight of a statement" (p. 84), a register of factual status. A modality can be used to either increase or decrease the degree of rhetorical facticity. Similarly, linguists use the term hedge to describe a word or phrase that effectively dilutes the certainty, authority, or truth value of a statement. Lakoff (1972) defined a hedge as language "whose job it is to make things fuzzier" (p. 195).Kirk demoted the truth value of his statements, creating some room for doubt or alternative interpretation. Perhaps children whose mental retardation was not "generalized" could also have a learning disability.Three years later, in 1966, he would more fully assert that very claim. If a child with mental retardation "has discrepancies among abilities, or if he has special abilities and marked disabilities, he could be classified as a child with a learning disability as well as overall mental retardation" (Kirk, 1966, p. 2). One could have a generally depressed profile of intellectual ability that still included significant gaps between high and low areas of functioning. He would articulate this same notion of possible co-morbidity of mental retardation nine times between 1963 and 1984 (see Table 1).In the second of Kirk's 1963 speeches, speaking to a very different audience of parents and advocates, he presented a definition of learning disabilities that differed dramatically from his statement to the gathering of scientists:He dropped all possible etiologies of the disorder, including cerebral injury and emotional disturbance.In this revision, the phrasing concerning mental retardation constituted an unequivocal exclusion. Contrary to what Kirk had suggested with the modifiers "most" and "generalized" a few months earlier, a child with mental retardation could not also have a learning disability.It seems that Kirk's presentation to the conference of parent advocates was, at least to some extent, a case of telling the audience what they wanted to hear. His presentation distanced learning disability from the highly stigmatized category of mental retardation. He avoided any discussion of the causes of the learning problem. If he had used any of the standard etiologies (e.g., brain injury, flawed genetic inheritance, or deficient environmental stimulation), the many parents in the audience might have squirmed at the suggestion of blame.Quite likely, Kirk felt pressured by parents to make certain statements in his speech. He later admitted to having mixed feelings about providing a definition of learning disability at the conference. He was wary about adding yet one more diagnostic label of questionable pedagogical value to the professional compendium (Kirk, 1976). During the speech, right before providing a definition for learning disability, he professed to the audience his strong reluctance to do so.Kirk invested far more time and words attempting to convince the listeners to disregard disability definitions than actually offering a definition of learning disability. Later, he recalled that "several [parents] approached me with the admonition that they needed help in the selection of a name for their proposed national organization" (Kirk, 1976, p. 255). Accompanied by words of caution and even mild protest, Kirk gave the parents what they wanted.What we find in this historical analysis is that Samuel Kirk is not a purified icon or an idealized figure gilded in a glorious legacy. We view him as a real person, someone attempting to deal quite awkwardly with too many concepts, constraints, and pressures. As the most famous special educator in the United States during the period of rapid growth in the years immediately prior to and following the passage of P.L. 94–142, Kirk was a political actor tugged in every possible direction. His scattered and often contradictory words left a zigzag trail that attests not only to the "religious revival" (Frierson, 1976, p. 139) emotional tone of the early learning disabilities movement. It also indicates just how difficult it is to use language to pin down an authoritative concept once and for all.I do not believe that Samuel Kirk needs defending. The importance of his contributions to the field of special education is undeniable. In the narrative of the growth of American special education in the latter half of the 20th century, Kirk is the clear hero.Our more practical challenge is to draw useful lessons for today from Kirk's contradictions. Although he was a staunch proponent of the idea that all children can learn, on one spring day in 1967, in a speech at the University of Minnesota, he contradicted his usual message. He used mental retardation as a contrasting foil, a less educable population, in his effort to explain the intellectual capacities of children with learning disabilities (Kirk, 1967b).What does it mean to us when a special education hero stumbles?One possible lesson concerns the cultural pervasiveness of an ugly politics of disability that punishes those deemed furthest from notions of "normal." Even Kirk—even the great Kirk—slipped into this quagmire of disability politics, pushing down on mental retardation in order to elevate learning disability as a disorder likely to respond positively to intervention.In 1967, just as today, a cruel political discourse that devalues persons with mental retardation labels was readily available and too-often employed, even by well-known educators and psychologists. When Kirk praised the educational potential of learning disability in contrast to that of the lesser mental retardation, he stepped into a political pothole that was not of his invention (Kirk, 1967b). He found it nonetheless. He found it quite easily because it was conventional thinking about persons with mental retardation.Kirk's stumble may tell us that the cruel politics of disability that diminishes persons with the mental retardation label (or intellectual disability in current terms) to the bottom of the social hierarchy is not completely divorced from the intellectual and practical traditions of the field of special education. Certainly, the modern American field of special education was founded on Kirk's idea that students conventionally thought to have little or no educational potential deserve public school instruction. But the field, like Kirk, is filled with contradictions.The contribution of the field of special education to the political devaluation of students with disabilities in the schools has been the subject of concern among many scholars (e.g., Brantlinger, 2006; Harry & Klingner, 2006; Ware, 2004). Illuminating the politics of disability in the schools and combating social injustice requires that we honestly and fully acknowledge how standard special education beliefs and practices can operate to stigmatize and isolate children. Toward this end, we should devote less energy to the perpetuation of idealized historical legacies that avoid the unsavory and problematic. We should expend far more energy confronting the cultural devaluation of children with disabilities in our schools and communities.

Accessible summary: “Learning disability” replaced the outdated term, “mentally handicapped” in the UK over 20 years ago. Recently, some services and professionals have been using the term “intellectual disability” instead. In America, “intellectual disability” has been chosen to replace the old term, “mental retardation.” There has been lots of explanation why this has happened. In the UK, there has not been much explanation. It is important to know what terms mean and why they are being used because their use affects the lives of people with learning disabilities. This article looks at what different people in the UK think about term “intellectual disability.” AbstractBackgroundThe term “intellectual disability” is increasingly used to refer to people with learning disabilities in British learning disability policy, practice and research. This change is undoubtedly a reflection of the changing international context. The inclusion of the term “intellectual disability” has been particularly pronounced in countries such as the USA. By contrast, this change has been relatively silent in England.MethodsIn light of this, the paper explores the discussions of 12 focus groups conducted with professional and lay groups working in or influencing learning disability research and practice in England. Each focus group was asked the following two questions: Have you heard of the term “intellectual disability” and how do you feel about the term “intellectual disability?.”Discussion and ConclusionThematic analysis of the discussions identified four dominant themes: dislike and disbelief; ambiguity; tautology; and fear. It is concluded that more explanation is required in order for researchers and practitioners in England to understand this semantic change.

More people with an intellectual disability are now living to older age and there is a paucity of information about this group of people. Mental illness is 2-3 times more prevalent in people with an intellectual disability than in the general community; however, this often goes undiagnosed and undetected. Additional issues complicate assessment if the person is also ageing. Little is known about the prevalence and nature of mental illness in this group of older people. Instruments used to assist in the diagnosis of mental illness in the general community are not suitable for use with individuals who have an intellectual disability. The Developmental Behavioural Checklist for Adults (DBC-A) (Mohr, Tonge & Einfeld, 2005) is a well established screen for psychopathology; however, it has no standardised norms and has not been specifically validated for older adults. Lack of knowledge and inadequate assessment processes can result in inappropriate service delivery and therefore reduced quality of life for older people with an intellectual disability and their carers. The general aim of the research was to contribute knowledge about older people with an intellectual disability and more specifically to investigate their mental health. In addition, the validity of the DBC-A for use with older adults was examined. An epidemiological study of adults aged 55 years and older, who lived in representative areas in South Australia, and who were registered with intellectual disability service agencies, were surveyed. Familiar informants completed a questionnaire booklet (see Appendix A). The Adaptive Behaviour Dementia Questionnaire (ABDQ) (Prasher, Farooq & Holder, 2004) and, for a subset of the participants, the Dementia Screening Questionnaire for Individuals with Intellectual Disability (DSQIID) (Deb, Hare, Bhaumik et al., 2007a) were also completed (see Appendices F and G). There was a participation rate of 91.7% and participants’ ages ranged from 55-86 years, the majority being males (56.6%), except in the oldest cohort. Those aged 55-64 years appears to differ from those who are older and younger. They have more severe intellectual impairments, more chronic health conditions, they are less likely to be engaged in activities, and have fewer relationships. Those older than 65 years are more similar to older people without an intellectual disability except that more live in nursing homes or larger congregate care settings. Standardised normative data was established for the DBC-A for older people. The DBC-A profile showed age-associated decline in psychopathology; however, the intensity of behaviours was higher in older people with more severe cognitive impairment. Significant psychopathology was found in 16% of older adults. There were no gender differences but those with a moderate level of intellectual disability had the highest rates. Being younger, having fewer hours in activity, living in large congregate care and significant life events were all risk factors. Rates of dementia of between 5-7% were found using the ABDQ, DSQIID and respondent report. A dementia screen using items from the DBC-A (DBC-A Dem) identified almost double that number. There was no association between age and dementia status in this study, which differs from other research, as does the lack of relationship between having Down syndrome and dementia status. The results of this study confirm a picture of differential mortality and the presence of a healthy survivor cohort who have fewer chronic health problems and are more likely to have a mild level of intellectual disability. Although there is an age-related decline in the prevalence of mental illness, rates are still one and a half times more than older people who do not have an intellectual disability. With minor amendments, the DBC-A is a valid screening instrument for use with older people with an intellectual disability. It can record changes in a wide range of emotional and behaviour disturbances including those that may affect older people, including dementia. When used with other DBCs for children and adolescents (Einfeld & Tonge, 1995) it provides a simple and familiar way to record psychopathology throughout the lifespan. This offers clinicians, researchers and service providers a means to monitor and maintain the mental health and well-being of older people with an intellectual disability.

In the absence of dementia or delirium, cognitive impairment in non-elderly adults is most often associated with intellectual or developmental disability. There is limited information about the prevalence of intellectual disability or its impact on mental disorders and health services use derived from epidemiological studies. Existing assessment measures of intelligence are not easily administered in large, population samples. This study investigates cognitive impairment in the non-elderly utilizing data from the NIMH Epidemiologic Catchment Area Program (ECA). The study also examines the validity and psychometric properties of a newly-developed, brief, and easily administered instrument to assess cognitive impairment in non-elderly adults in community and clinical populations. Utilizing items of the ECA Standardized Psychiatric Examination encompassing three domains—proverb interpretation, fund of knowledge, and interpretation of similarities and differences—a scale (PROFOKS) was developed and validated against various measures and indicators of cognitive impairment in both the community and clinical samples.

A bstract Background: Epilepsy often co-occurs with intellectual disability (ID), presenting intricate clinical manifestations and treatment challenges. Understanding the interplay between epilepsy and ID is crucial for effective patient care and education. Materials and Methods: This study aimed to comprehensively investigate demographic, clinical, and neuroimaging and electrophysiological aspects of pediatric patients diagnosed with epilepsy, focusing on those with and without ID. Participants aged 14–19 years were enrolled. Results: A total of 133 adolescents were recruited (46 ID and 87 control). Individuals with ID had a longer duration of epilepsy and lower educational attainment. Seizure profiles exhibited variations, with a higher prevalence of generalized tonic–clonic seizures in the ID group (52.2% vs. 25.3%; P = 0.004). Treatment strategies differed as more participants with ID were prescribed specific antiepileptic drugs such as clobazam (69.6% vs. 25.3%; P < 0.001) and levetiracetam (71.7% vs. 41.4%; P = 0.001). Participants with ID experienced poorer seizure control (37% vs. 82.8%; P < 0.001) and had higher rates of refractory epilepsy (63% vs. 16.1%; P < 0.001). Individuals with ID displayed a lower prevalence of interictal epileptiform discharges (6.5% vs. 26.4%; P < 0.001) and higher generalized slowing (26.1% vs. 2.3%; P < 0.001) in EEG readings. Additionally, the ID group exhibited greater involvement of frontal and fronto-temporal brain areas, distinct seizure etiologies, and a higher prevalence of non-enhancing lesions (97.8% vs. 14.9%; P < 0.001). Discussion: The study’s findings emphasize the need for tailored approaches to patient care, considering the intricate interactions between epilepsy, cognitive impairments, and treatment strategies. Multidisciplinary collaboration is vital to address the multifaceted needs of patients with epilepsy and cognitive impairments.

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

Background Patients with Learning Disabilities (LD) often present with comorbidities, have an increased risk of mental health disorders (Smiley, 2005). It is largely evidenced they receive substandard care (CIPLOD 2013, Dinsmore and Higgins, 2011). This patient group requires interprofessional, multi-disciplinary care, and professionals with specific relevant training (Dinsmore and Higgins, 2011). Simulated patients with LD are very rarely used in healthcare education, with only a few notable exceptions (O’Boyle-Duggan et al , 2012, Thaker et al , 2007, Soni et al , 2016), despite recognition of the specific advantages to involve patients with LD in medical and other professional training (Thomas et al , 2014). Method Maudsley Simulation and the Estia Centre have developed an interprofessional simulation training course involving simulated patients with LD, with a strong mental health focus. Actors involved in scenarios belong to a theatre company formed by people with LD. This incidentally provides an opportunity to engage in meaningful and valued social interactions alongside people with LD. Pre and post-course quantitative measures and a post-course evaluation form with open questions were collected to assess the impact of the training on the participants. Findings At the time of writing preliminary findings are available for the first two course pilots. Further data collection and analyses to be completed and presented at ASPiH 2016. A multi professional group attended the simulation training. Our questionnaire was designed to assess health care non-technical skills. The data analysis of the first pilots showed an increase of the mean rating from 7.06 (SD 1.32) to 7.83 (SD 1.32). The average rating of confidence in working with people with LD increased in from 5.375 to 7.25. The qualitative data highlighted that both technical and non-technical learning objectives were largely met for the participants. References Dinsmore A, Higgins L. Study of patients9 experiences of treatment by hospital staff. Learn Disabil Pract . 2011; 14 (5):18–22. HQIP (2015) Confidential enquiry in to deaths of people with learning disabilities CIPOLD 2013 [online]. Available from: http://www.hqip.org.uk/public/cms/253/625/19/438/Confidential Inquiry into premature deaths of people with learning disabilities CIPOLD full final report 2013.pdf?realName. O9Boyle-Duggan M, Grech JD, Brandt R. Effectiveness of live simulation of patients with intellectual disabilities. J Nurs Educ . 2012; 51 (6):334–342. Smiley E. Epidemiology of mental health problems in adults with learning disability: an update. Adv Psychiatr Treat . 2005; 11 (3):214–222. Soni S, Hall I, Doulton P, Bowie P. Involving people with intellectual disabilities in the formal assessment of psychiatrists9 skills. Eur Psychiatry . 2016; 33 (suppl S16). Thacker A, Crabb N, Perez W, Raji O, Hollins S. How (and why) to employ simulated patients with intellectual disabilities. Clin Teacher . 2007; 4 (1):15–20. Thomas B, Courtenay K, Hassiotis A, Strydom A, Rantell K. Standardised patients with intellectual disabilities in training tomorrow9s doctors. Psychiatr Bull . 2014; 38 (3):132–136.

Competence in the motor domain and satisfactory motor skills show children to interact with their surrounding environment and play important roles to engage in daily occupations. The most common form of motor skill assessment is the use of performance-based tests. Despite its widespread current use in research and its potential for clinical application, there is litter research on convergent validity of the Movement Assessment Battery for Children (MABC) and Bruininks-Oseretsky Test of Motor Proficiency (BOTMP) for typically developing school-aged children. The agreement between these two tests for children with learning disabilities (LD) and intellectual disabilities (ID) is still not known. The aim of this study was to investigate the convergent validity between these two assessment tools for children with learning disabilities (LD) and intellectual disabilities (ID). 50 participants was recruited (8 subjects with intellectual disabilities and 42 subjects with learning disabilities). The Pearson correlation showed that the MABC (or MABC-2) was significantly associated with the BOTMP (or BOT-2) for both gross motor test items and fine motor test items. The MABC and BOTMP appear to assess associated motor skill abilities in children with intellectual disabilities and learning disabilities.

The importance of enabling patients to provide feedback on their experience of healthcare is widely accepted but there are few appropriate measures to enable children and young people to directly provide feedback, particularly those with intellectual disability or younger children. Our primary aim was to develop and test patient-reported experience measures for children and young people with intellectual disability who use inpatient hospital services. A secondary aim was to test these measures with younger children aged 4-7 years without intellectual disability. A hospital inpatient patient-reported experience measure previously developed for children aged 8-11 years was revised iteratively in conjunction with a parent advisory group (comprising five parents of children and young people with and without intellectual disability) and children and young people with intellectual disability. The final patient-reported experience measure was tested in children's inpatient wards at seven hospitals in England over a 3-month period. Parents suggested a need for a single patient-reported experience measure for all children with intellectual disability which contained simpler language, fewer questions and response options, and images to illustrate each question. The final patient-reported experience measure had 22 questions, each with a corresponding image, and a free text box in which children could add anything further. Questions addressed environment, people, care and treatment and safety. During testing at seven children's hospitals, 52 children and young people with intellectual disability (4-18 years) and 76 children without intellectual disability (4-7 years), all of whom received inpatient care, completed the patient-reported experience measure. Two percent of data were missing; in 16 instances respondents either ticked two responses or placed a tick between two response categories. Half the respondents added comments and/or drew a picture. The development of a patient-reported experience measure for children and young people with intellectual disability provides a previously unavailable opportunity for them to report on their experiences of inpatient care and have their voices heard. Future work to extend testing to a wider group is underway and will enable us to clarify whether one patient-reported experience measure is valid and reliable for all children and young people with intellectual disability. A parent advisory group, comprising parents/carers of young people with or without a learning disability, advised on all aspects of the wider study design and specifically on revisions to the measure reported in this manuscript. The parent advisory group met twice a year during the study with email contact between meetings for specific requests and study updates. Representatives of the advisory group also attended the study steering group.

BackgroundA national birth cohort study was used to investigate whether high-risk family factors at 1.5-year-olds can increase the risk of attention-deficit/hyperactivity disorder (ADHD) diagnosis when children reach 5.5 years. The pathway relationship of high-risk family factors, children's developmental conditions, risk of autism spectrum disorder (ASD), and diagnosis of intellectual disability (ID), learning disability (LD), and ASD was also investigated.MethodsThe 1.5-, 3- and 5.5-year-old Taiwan Birth Cohort Study (TBCS) dataset was used (N = 19,185). The high-risk familial factor was measured using five questions assessing whether parents are currently unmarried, unemployed, do not have any social insurance, perceive a “very heavy” economic childcare burden, and at least one of the parents has a disability certification. Developmental conditions were assessed using the Taiwan Birth Cohort Study—Developmental Instrument (TBCS-DI), and ASD risk was measured using the Modified Checklist of Autism in Toddlers. Data on ADHD, ID, LD, and ASD diagnoses were collected at age 5.5. The odds ratio model investigated whether children from families with high-risk factors at 1.5-years were at increased risk of ADHD, ID, LD, or ASD diagnosis at 5.5-years, compared to those children from families without such risks. Structural equation modeling investigated the logistic regression pathway relationship of high-risk familial characteristics, children's developmental conditions, autism screening, and diagnosis.ResultsIn the national birth cohort dataset of 19,185 children, 2070 (10.8%) met at least one of the high-risk familial factors. Children who met one high-risk familial factor had a 1.21-fold increased risk for ADHD diagnosis, 1.36-fold increased risk for LD diagnosis, and 1.80-fold increased risk for ASD diagnosis, compared to children from families without risks. High-risk familial factors directly increased the risk of ADHD and ID diagnosis, and indirectly increased the risk of ADHD, ID, LD, and ASD diagnosis through the mediating factor of children's development.ConclusionsChildren who met more high-risk familial characteristics were at higher risk of ADHD, ID, LD, and ASD diagnosis. Development at three years was predictive of diagnosis at 5.5 years. Thus, developmental screening at age three is vital for interventions. Preventive, family-focused, and/or child-rearing services for at-risk families are important for improving outcomes for these children and their families.

Accessible summaryThis article is about families where more than one of the boys or men in the family have a learning disability. We found that Families usually want to know the cause of the disability and to be able to give it a name. Sometimes they want to know whether other people in the family will have babies who will have a learning disability. Genetic research is a way for families to find these things out. Families have to balance how they care for people who have a learning disability and what other family members need. SummaryMany professionals working with individuals with intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The data reported here derive from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. A qualitative design was used, interviewing 120 members of 37 kinships and using framework analysis to explore the data. These family members were positive about participating in the genetic research. They wanted an explanation for what was going on in their family and to enable other family members to have choices about reproduction although the genetic research was unlikely to benefit individuals with intellectual disability.

<h3>Introduction</h3> Many people with a learning disability want information about death, grief and what to expect when someone is dying. They are often excluded from research and information development. <h3>Aims</h3> To explore the information needs of people with a learning disability when they, or someone they know, is dying or has died. To develop accessible information with user involvement at all stages. <h3>Methods</h3> We conducted a literature review, focus groups, and interviews focusing on terminal illness, dying and grief, and information formats. We spoke with fourteen people with a learning disability, seven family members, and twelve experts. We developed resources with input from these people. <h3>Results</h3> People with a learning disability are often excluded from conversations about their illness or prognosis, or that of someone they know. People wanted to understand and feel prepared. We involved people with a learning disability in producing a suite of accessible printed booklets and videos covering the topics: What is death? What is a terminal illness? What is a syringe driver? What happens when someone is dying? Your feelings after someone dies. We developed website information for professionals on ‘Palliative care for people with a learning disability’ and ‘Supporting someone with a learning disability when someone they know is dying or has died’. <h3>Conclusion</h3> Information should be available in multiple formats to allow for individual accessibility needs and preferences. People preferred information with simple words and images, and videos from friendly, trusted professionals. These resources can give family members and professionals more confidence in having conversations. It’s important to include people at all stages of information development. <h3>Impact</h3> The resources can help people with a learning disability to understand terminal illness, death and grief. They can help family members, friends and professionals to have open conversations. We will conduct an evaluation in 2026. <h3>References</h3> Tuffrey-Wijne I, Davidson J. Excellence in palliative and end-of-life care provision for people with intellectual disability.<i> Int J Palliat Nurs.</i> 2018 Dec 2;<b>24</b>(12):598–610. doi: 10.12968/ijpn.2018.24.12.598. PMID: 30571253. Tuffrey-Wijne I, Finlayson J, Bernal J, Taggart L, Lam CKK, Todd S. Communicating about death and dying with adults with intellectual disabilities who are terminally ill or bereaved: A UK-wide survey of intellectual disability support staff. <i>J Appl Res Intellect Disability.</i> 2020 Sep;<b>33</b>(5):927–938. doi: 10.1111/jar.12714. Epub 2020 Feb 18. PMID: 32072726. Adam E, Sleeman KE, Brearley S, Hunt K, Tuffrey-Wijne I. The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. <i>Palliative Med.</i> 2020 Sep;<b>34</b>(8):1006–1018. doi: 10.1177/0269216320932774. Epub 2020 Jun 17. PMID: 32552409; PMCID: PMC7596767.

One of the important purposes of equal rights legislation is to codify the right to equal and active participation in society for people with disabilities. Accommodating the needs of a person with a disability enables her/him to live with maximum independence, privacy, and dignity. Thus, most such laws include sections that emphasize accessibility as a significant enabler of participation. Accessibility describes the degree to which a system, facility, or service is usable without modification by as many people as possible (Australian Government Information Management Office [AGIMO], 2008). It refers to one’s ability to reach a place, move and navigate in it, use and enjoy a service, receive information, and take part in programs and activities, all in an equal, respectable, independent, and safe manner (Americans With Disabilities Act [ADA], 1990; Israeli Equal Rights for Persons With Disabilities Law — Accessibility Amendment, 2005). Access ramps or Braille-encoded elevator panels are ubiquitous examples of common accessibility accommodations. Yet, accessibility accommodations for people with intellectual disabilities are nearly absent, as their accessibility needs are often invisible to legislators, professionals, and laypeople alike. For example, although access needs to public transportation of a person using a wheelchair are easily apparent and protected by legislation, they are virtually nonexistent for ablebodied people with an intellectual disability (Improving Mobility and Accessibility for People with Learning Disabilities in Europe [MAPLE], 2003). Yet, transportation access is reported by people with intellectual disabilities as a significant barrier to community inclusion and social participation (Fager, Perker, & Kelly, 2005). Accessibility needs and accommodations for people with physical and sensory disabilities are covered extensively in the accessibility literature. However, while advising the Israeli National Commission on Equal Rights for People With Disabilities, I was surprised to discover that the development of similar models, guidelines, and reasonable accommodations for people with intellectual disabilities is preliminary at best (Salmi, 2007). Legislation and regulation of these issues are sparse, and most research is anecdotal and lacks a comprehensive underlying model of practice. Although some accessibility barriers and accommodations were intuitively apparent to me based on my clinical experience, as an occupational therapist, with adults with intellectual disabilities, others were later on identified through interviews I conducted with people with intellectual disabilities, family members, and service providers (YalonChamovitz, 2007). Below, I juxtapose the information garnered from the published literature with these factors to suggest a conceptual model of accessibility for people with intellectual disabilities.

Few studies examined the development of physical fitness in children and youth with intellectual disabilities (ID), but the developmental patterns of physical fitness are largely unknown. The first aim was to examine physical fitness of primary school children with ID, aged 8-12, and compare the results with typically developing children in order to determine the performance level of children with ID. The second aim was to investigate the developmental trajectory of physical fitness in children with ID and the possible influence of gender and severity of cognitive impairment in a 4-year during longitudinal study. Seventy-three children with borderline or mild ID (51 boys, 22 girls; age range 8-11 in the year of enrolment) were measured annually on running speed, aerobic endurance (cardiovascular endurance), explosive strength, handgrip strength and trunk strength. Physical fitness scores of 515 typically developing children (266 boys, 249 girls; age range 8-12) were collected for reference values. The results indicated statistically significant differences (with moderate to large Effect Sizes) between children with ID and typically developing children in all ages, favouring the typically developing children, and showed that the gap remained stable across the ages or decreased with increasing age. Multilevel models showed that the children with ID developed statistically significant on all items of physical fitness between age 8 and age 12. There was no statistically significant effect of gender on physical fitness, and the developmental trajectories were similar for boys and girls. For children with borderline and mild ID the developmental trajectories were parallel, but children with mild ID scored statistically significant worse on running speed, explosive strength and handgrip strength. Despite statistically significant development of physical fitness in children with ID, their physical fitness levels should be stimulated. This should start already in young children (<8 years) and the children with the most severe cognitive impairments need special attention.