Segregación escolar del alumnado con necesidades educativas especiales en Educación Infantil en el contexto local / School segregation of students with special educational needs in Early Childhood Education in the local context

Esta investigación busca profundizar en la segregación escolar del alumnado con necesidades educativas especiales del segundo ciclo de Educación Infantil estimando su magnitud, determinando la incidencia de la titularidad del centro y de su adscripción al Programa Bilingüe y describiendo su evolución. Para ello, se realiza un estudio ex post facto con datos de los 10.182 estudiantes del segundo ciclo de Educación Infantil matriculados en alguno de los 77 centros ordinarios públicos y privados-concertados situados en dos ciudades de tamaño medio-grande de la Comunidad de Madrid. Los resultados indican que la magnitud de la segregación escolar está en torno al 0.20 (ISG); que la incidencia de la titularidad es baja (4.6 %), pero es alta la del Programa Bilingüe (17.2 % de promedio); y que la segregación ha descendido ligeramente en los últimos años, pero las diferencias entre centros atendiendo a su titularidad y adscripción al Programa Bilingüe han crecido. Con ello, se concluye que hay que prestar atención a la segregación en Educación Infantil y tomar medidas para combatirla. También se destaca la necesidad de replantear el Programa Bilingüe por su incidencia en la segregación escolar. (AU)

This research aims to explore the school segregation of students with special educational needs in the second cycle of Early Childhood Education by estimating its magnitude, determining the incidence of school ownership and affiliation to the Bilingual Program, and describing its evolution. To achieve this, we conduct an ex post facto study with data from the 10,182 students enrolled in one of the 77 public and private-subsidised schools in the Community of Madrid. The results indicate that the magnitude of school segregation is around 0.20 (ISG); that the incidence of school ownership is low (4.6 %), while the incidence of the Bilingual Program is high (17.2 % on average); and that segregation has slightly decreased in recent years, however the differences between schools based on ownership and affiliation to the Bilingual Program have increased. Therefore, we conclude that it is necessary to address segregation in Early Childhood Education and that measures need to be taken to combat it. We also highlight the importance of reconsidering the Bilingual Program due to its impact on school segregation. (AU)

Segregación escolar del alumnado con necesidades educativas especiales en Educación Infantil en el contexto local / School segregation of students with special educational needs in Early Childhood Education in the local context

Esta investigación busca profundizar en la segregación escolar del alumnado con necesidades educativas especiales del segundo ciclo de Educación Infantil estimando su magnitud, determinando la incidencia de la titularidad del centro y de su adscripción al Programa Bilingüe y describiendo su evolución. Para ello, se realiza un estudio ex post facto con datos de los 10.182 estudiantes del segundo ciclo de Educación Infantil matriculados en alguno de los 77 centros ordinarios públicos y privados-concertados situados en dos ciudades de tamaño medio-grande de la Comunidad de Madrid. Los resultados indican que la magnitud de la segregación escolar está en torno al 0.20 (ISG); que la incidencia de la titularidad es baja (4.6 %), pero es alta la del Programa Bilingüe (17.2 % de promedio); y que la segregación ha descendido ligeramente en los últimos años, pero las diferencias entre centros atendiendo a su titularidad y adscripción al Programa Bilingüe han crecido. Con ello, se concluye que hay que prestar atención a la segregación en Educación Infantil y tomar medidas para combatirla. También se destaca la necesidad de replantear el Programa Bilingüe por su incidencia en la segregación escolar. (AU)

This research aims to explore the school segregation of students with special educational needs in the second cycle of Early Childhood Education by estimating its magnitude, determining the incidence of school ownership and affiliation to the Bilingual Program, and describing its evolution. To achieve this, we conduct an ex post facto study with data from the 10,182 students enrolled in one of the 77 public and private-subsidised schools in the Community of Madrid. The results indicate that the magnitude of school segregation is around 0.20 (ISG); that the incidence of school ownership is low (4.6 %), while the incidence of the Bilingual Program is high (17.2 % on average); and that segregation has slightly decreased in recent years, however the differences between schools based on ownership and affiliation to the Bilingual Program have increased. Therefore, we conclude that it is necessary to address segregation in Early Childhood Education and that measures need to be taken to combat it. We also highlight the importance of reconsidering the Bilingual Program due to its impact on school segregation. (AU)

Learning and Memory Impairments With Attention-Deficit/Hyperactivity Disorder.

ADHD is a common chronic neurodevelopmental disorder and is characterized by persistent inattention, hyperactivity, impulsivity and are often accompanied by learning and memory impairment. Great evidence has shown that learning and memory impairment of ADHD plays an important role in its executive function deficits, which seriously affects the development of academic, cognitive and daily social skills and will cause a serious burden on families and society. With the increasing attention paid to learning and memory impairment in ADHD, relevant research is gradually increasing. In this article, we will present the current research results of learning and memory impairment in ADHD from the following aspects. Firstly, the animal models of ADHD, which display the core symptoms of ADHD as well as with learning and memory impairment. Secondly, the molecular mechanism of has explored, including some neurotransmitters, receptors, RNAs, etc. Thirdly, the susceptibility gene of ADHD related to the learning and impairment in order to have a more comprehensive understanding of the pathogenesis. Key words: Learning and memory, ADHD, Review.

Prevalence of co-occurring diagnoses in people exposed to alcohol prenatally: Findings from a meta-analysis.

BACKGROUND: Individuals with prenatal alcohol exposure (PAE) commonly experience co-occurring diagnoses, which are often overlooked and misdiagnosed and have detrimental impacts on accessing appropriate services. The prevalence of these co-occurring diagnoses varies widely in the existing literature and has not been examined in PAE without an FASD diagnosis. METHOD: A search was conducted in five databases and the reference sections of three review papers, finding a total of 2180 studies. 57 studies were included in the final analysis with a cumulative sample size of 29,644. Bayesian modeling was used to determine aggregate prevalence rates of co-occurring disorders and analyze potential moderators. RESULTS: 82 % of people with PAE had a co-occurring diagnosis. All disorders had a higher prevalence in individuals with PAE than the general population with attention deficit hyperactivity disorder, learning disorder, and intellectual disability (ID) being the most prevalent. Age, diagnostic status, and sex moderated the prevalence of multiple disorders. LIMITATIONS: While prevalence of disorders is crucial information, it does not provide a direct representation of daily functioning and available supports. Results should be interpreted in collaboration with more individualized research to provide the most comprehensive representation of the experience of individuals with PAE. CONCLUSIONS: Co-occurring diagnoses are extremely prevalent in people with PAE, with older individuals, females, and those diagnosed with FASD being most at risk for having a co-occurring disorder. These findings provide a more rigorous examination of the challenges faced by individuals with PAE than has existed in the literature, providing clinicians with information to ensure early identification and effective treatment of concerns to prevent lifelong challenges.

Dysfunctions of cellular context-sensitivity in neurodevelopmental learning disabilities.

Pyramidal neurons have a pivotal role in the cognitive capabilities of neocortex. Though they have been predominantly modeled as integrate-and-fire point processors, many of them have another point of input integration in their apical dendrites that is central to mechanisms endowing them with the sensitivity to context that underlies basic cognitive capabilities. Here we review evidence implicating impairments of those mechanisms in three major neurodevelopmental disabilities, fragile X, Down syndrome, and fetal alcohol spectrum disorders. Multiple dysfunctions of the mechanisms by which pyramidal cells are sensitive to context are found to be implicated in all three syndromes. Further deciphering of these cellular mechanisms would lead to the understanding of and therapies for learning disabilities beyond any that are currently available.

Adapting the EQ-5D-3L for adults with mild to moderate learning disabilities.

BACKGROUND: Approximately 1.5 million adults in the UK have a learning disability. The difference between age at death for this group and the general population is 26 years for females and 22 years for males. The NHS Long Term Plan (January 2019) recognises learning disabilities as a clinical priority area. People with a learning disability are often excluded from research by design or lack of reasonable adjustments, and self-reported health status/health-related quality of life questionnaires such as the EQ-5D are often not appropriate for this population. Here, we systematically examine the EQ-5D-3L (its wording, content, and format) using qualitative methods to inform the adaption of the measure for use with adults with mild to moderate learning disabilities. METHODS: Think-aloud interviews with carers/advocates of learning-disabled adults were undertaken to explore the difficulties with completing the EQ-5D-3L. Alternative wording, language, structure, and images were developed using focus groups, stakeholder reference groups, and an expert panel. Data analysis followed a framework method. RESULTS: The dimensions and levels within the EQ-5D-3L were deemed appropriate for adults with mild to moderate learning disabilities. Consensus on wording, structure, and images was reached through an iterative process, and an adapted version of the EQ-5D-3L was finalised. CONCLUSION: The EQ-5D-3L adapted for adults with mild to moderate intellectual/learning disabilities can facilitate measurement of self-reported health status. Research is underway to assess the potential use of the adaptation for economic evaluation.

The development of number line estimation in children at risk of mathematics learning difficulties: A longitudinal study.

Children with mathematics learning difficulties (MLD) show poorer performance on the number line task, but how performance on this task relates to other mathematical skills is unclear. This study examined the association between performance on the number line task and mathematical skills during the first 2 years of school for children at risk of MLD. Children (N = 100; Mage = 83.63 months) were assessed on four occasions on the number line task and other mathematical skills (math fluency, numerical operations, and mathematical reasoning). Estimation patterns were analyzed based on the representational shift and proportional judgment accounts separately. More consistent longitudinal trends and stronger evidence for differences in mathematical skills based on estimation patterns were found within the representational shift account. Latent growth curve models showed accuracy on the number line task as a predictor of growth in some mathematical skills assessed. We discuss impacts of methodological limitations on the study of estimation patterns.

Learning difficulties in school children: health and education professionals' perceptions.

OBJECTIVES: to understand health and education professionals' perceptions regarding children's learning difficulties in public schools. METHODS: qualitative research, of the participatory action type, linked to Paulo Freire's Research Itinerary. Forty-five professionals participated, through interviews and a Virtual Culture Circle. The analysis was developed through careful reading, reflection and interpretation of highlighted topics. RESULTS: professionals discussed the (in)visibility of learning difficulties, strategies and resources in the educational sector and the search for solutions in the health sector. It was found that the production of complaints related to school learning is attributed predominantly as an individual problem of children or their family, exempting the educational institution from this process. FINAL CONSIDERATIONS: greater investment in professional training and development policies is urgently needed to facilitate coordination between sectors, with a view to overcoming outdated pedagogical and health models.

Comparison of self-esteem and quality of life in 8-12-year-old children with ADHD with and without learning disorders.

BACKGROUND: Attention Deficit/Hyperactivity Disorder (ADHD) is one of the most common disorders in school-aged children. Learning disorder (LD) is also one of the most important psychiatric disorders in children, which can often be associated with ADHD. In this study, we sought to compare self-esteem and quality of life in 8 to 12-year-old children with attention deficit/hyperactivity disorder with and without co-occurring learning disorders in order to emphasize the importance of attention and diagnosis in children with ADHD. METHOD: Among the 8- to 12-year-old outpatients referred to the child and adolescent psychiatry clinic of Omid Babol Clinic, 120 children aged 8 to 12 years with attention deficit/hyperactivity disorder whose disease was diagnosed by a child and adolescent psychiatry subspecialist. Among the tools used to collect information was the Colorado Learning Difficulties Questionnaire by Wilcott et al. (CLDQ), five-scale self-esteem test of Pepe et al. (1989) for children and quality-of-life questionnaire for 8-12-year-old children (PedsQL). RESULTS: This study investigated self-esteem and quality of life in children with ADHD (n = 120, 51.7% boys). Children with ADHD and learning disabilities reported significantly lower self-esteem and quality of life compared to those with ADHD alone. CONCLUSION: Considering the relatively high probability of co-occurrence of ADHD and learning disorders, if one of them is diagnosed in a child, it is possible to look for other disorders in the child in order to avoid the more severe negative effects that this co-occurrence can have on the child by diagnosing it as soon as possible.

From classroom to life: Gender differences in the persistent effect of learning disabilities on adult depressive symptoms.

Despite the well-established link between adolescent learning disabilities (LD) and mental health, little is known about its long-term consequences. This study examines the relationship between adolescent LD and adult depressive symptoms, with a focus on gender differences and underlying mechanisms. Using a sibling sample from the National Longitudinal Study of Adolescent to Adult Health (N = 3,414), this study estimated sibling fixed effects models to account for unobserved family-level characteristics such as genes and early childhood family and social context. Sobel mediation analyses were conducted to examine social-psychological mechanisms, including the student-teacher relationship, the student-student relationship, and a sense of school belonging. LD in adolescence was positively associated with depressive symptoms in adulthood (b = 0.823, p < 0.05). This association remained robust when controlling for unobserved family-level confounders as well as educational attainment in adulthood. Gender-stratified models showed that only the association for women is statistically significant (b = 1.935, p < 0.05), and its magnitude is nearly three times that of the association for men. Sobel mediation tests indicate that a decline in a sense of school belonging mediates approximately 17% of the association between adolescent LD and adult depressive symptoms. This study's findings suggest that LD in adolescence is associated with an increase in depressive symptoms in adulthood, particularly in women, and a low sense of school belonging may be a potential mediator. Implementing interventions to improve the school integration of girls with LD could be an effective means of improving their long-term mental health.

Estimating the prevalence of Non-Verbal Learning Disability (NVLD) from the ABCD sample.

Non-Verbal Learning Disability (NVLD) is a neurodevelopmental disorder characterized by deficits in processing visuospatial information but with age-appropriate verbal skills. This cognitive profile has been hypothesized to be associated with atypical white matter, but at the present there is a lack of evidence for this hypothesis. Currently, the condition is not characterized within the main diagnostic systems, in part because no clear set of criteria for characterizing the disorder exists. This report is the first attempt to estimate NVLD prevalence, using two sets of diagnostic criteria, in a large sample of over 11,000 children who were selected without regards to problems of specific nature, either psychological, neurological, physical and/or social. Furthermore, it examined the association between the profile of cognitive abilities and aspects of whole-brain white matter measures in children with and without symptoms associated with NVLD. Participants were drawn from the Adolescent Brain Cognitive Development (ABCD) study, a 10-year longitudinal study of 11,876 children in the U.S. The data used in the present study were drawn from the initial testing point at which the children were 9-10 years old. Prevalence of NVLD based on two distinct sets of criteria, correlations between the measures used to create the criteria, correlations between criteria measures and measures of white matter integrity. The cognitive criteria included measures of visuospatial processing, reading, intelligence and social skills. By varying the cut-offs applied to social skills in conjunction with visuo-spatial difficulties, spared reading skills and intelligence scores, we calculated prevalence for two NVLD groups. White matter characteristics were measures of volume, fractional anisotropy and mean diffusivity. Based on the criteria used, the estimated prevalence of NVLD varied from 1 to 8%. Furthermore, children with NVLD showed a dissociation between measures of visuo-spatial processing not observed in non-NVLD children. At the neurological level, findings provide preliminary evidence of associations between the cognitive profile of NVLD and abnormalities in white matters tracts. The present study documents that exists, within this large non-selected sample, a proportion of youth who show evidence of NVLD. Given those results, it appears essential to establish the best diagnostic criteria, to improve the treatment options and quality of life for children with this disorder.

Impact of quarantine on the experience and management of children with learning disabilities or attention deficit disorders with or without hyperactivity: A retrospective observational study.

BACKGROUND: During the COVID-19 pandemic, France faced a 2-month lockdown in 2020, marked by numerous restrictions. This study aimed to examine the experience and management of children aged 6-17 years with learning and/or attention disorders during the first lockdown. METHODS: We conducted an observational, retrospective study, with data collection from March 1 to May 31, 2021, by means of an anonymous digital qualitative questionnaire completed by parents. The experience of confinement as well as the children's behavior, schooling, and level of progress during rehabilitation were assessed by parents through a Likert scale. Data were compared according to two groups: negative experience and positive or neutral experience of the child's confinement. RESULTS: A total of 251 questionnaires were collected and 217 were analyzed. Overall, 47 children (21.7 %) reported a negative experience of the confinement period. In total, 164 (75.6 %) of the children had their schooling monitored throughout the period; half of the parents reported a course format unsuited to their child's disorders and a lack of motivation, and 46.5 % a refusal by their child to study. Only 16.8 % of parents reported a regression in their child's rehabilitation. These last three results were significantly associated with a poor experience of confinement (p < 0.05). CONCLUSION: The period of confinement was experienced relatively well by the children, and the rehabilitative management seemed to have been minimally impacted during this period. The therapeutic education of children, their parents, and also teachers is a major axis of improvement for better care and support of children with these disorders.

Computer-Assisted or Instructor-Led Reading Instructions of Portuguese Words with Orthography Difficulties

This article presents the findings of a study comparing a computer-assisted teaching program to traditional instructor-led teaching for elementary school children. The study evaluated reading and writing skills and employed a group design. Results showed that both teaching approaches were effective in improving reading performance, with slightly better gains in the instructor-led version. Both conditions facilitated learning transfer to new words with spelling difficulties, although the computer-assisted condition demonstrated higher generalization in final tests. Motivational and attentional factors, easily addressed by instructors but challenging in computer programs, were highlighted. The instructor-led condition's personalized feedback and differential consequences potentially contributed to the observed differences in learning gains. Individual differences in learners' input and performance were emphasized, suggesting the need for program adaptations. The advantages of computer-assisted teaching, such as scalability and individualized pacing, were discussed, along with the need for further refinements and automation. Strategies for enhancing teaching sequence flexibility and reducing the instructor's decision-making burden were proposed. The study contributes valuable insights into computer-assisted reading instructions for children with spelling difficulties, emphasizing their benefits and areas for improvement. The research underscores the importance of designing effective technology-mediated interventions and provides guidance for future developments in this field. (AU)

Symptoms of Cognitive Impairment Among Children With Atopic Dermatitis.

Importance: Previous studies suggest that atopic dermatitis (AD) is associated with cognitive impairment in children, but these studies have relied primarily on neurodevelopmental diagnoses (rather than symptoms) as proxy measures of cognitive function. It remains unknown if certain subpopulations of children with AD are at greater risk of cognitive impairment. Objective: To examine the association of AD with symptoms of cognitive impairment (difficulty in learning or memory) among US children and whether this association varies according to the presence or absence of neurodevelopmental comorbidities (attention-deficit/hyperactivity disorder [ADHD], developmental delay, or learning disability). Design, Setting, and Participants: This cross-sectional study used 2021 data from the US National Health Interview Survey collected on children aged 17 years or younger without intellectual disability or autism. The presence of AD was based on a parent or adult caregiver's report indicating either a current diagnosis of AD or a previous medical confirmation of AD by a health care professional. Main Outcomes and Measures: Difficulty with learning or memory as reported by the child's caregiver. Results: Among the weighted total of 69 732 807 participants, 9 223 013 (13.2%) had AD. Compared with children without AD, children with AD were more likely to experience difficulties with learning (10.8% [95% CI, 7.8%-15.8%] vs 5.9% [95% CI, 5.1%-6.9%]; P < .001) and difficulties with memory (11.1% [95% CI, 8.0%-15.9%] vs 5.8% [95% CI, 4.9%-6.9%]; P < .001). In multivariable logistic regression models adjusted for sociodemographic factors, asthma, food allergies, and seasonal allergies or hay fever, AD was associated with increased odds of difficulties in learning (adjusted odds ratio [AOR], 1.77; 95% CI, 1.28-2.45) and memory (AOR, 1.69; 95% CI, 1.19-2.41). In analyses stratified by neurodevelopmental comorbidities, AD was associated with 2- to 3-fold greater odds of memory difficulties among children with any neurodevelopmental disorder (AOR, 2.26; 95% CI, 1.43-3.57), including ADHD (AOR, 2.90; 95% CI, 1.60-5.24) or learning disabilities (AOR, 2.04; 95% CI, 1.04-4.00). However, AD was not associated with learning or memory difficulties among children without neurodevelopmental conditions. Conclusions and Relevance: Results of this cross-sectional study suggest that pediatric AD was generally associated with greater odds of reported difficulties in learning and memory. However, this association was primarily limited to children with neurodevelopmental comorbidities, such as ADHD or learning disabilities. These findings may improve the risk stratification of children with AD for cognitive impairments and suggest that evaluation for cognitive difficulties should be prioritized among children with AD and neurodevelopmental disorders.

Health inequalities for people with learning disabilities: why it matters and what emergency physicians need to know.

People with learning disabilities die on average 16 years earlier than the general population in England. They are a vulnerable group and may have unhealthy lifestyles and multimorbidity that lead to poor health outcomes. Worryingly, premature deaths are also more common and these often have contributory healthcare causes. This may be a result of staff lacking awareness, expertise and experience managing people with learning disabilities, the lack of reasonable adjustments, or discriminatory attitudes. Other issues include polypharmacy and inappropriate prescribing of sedatives, inappropriate use of do not resuscitate orders, and diagnostic overshadowing leading to delayed or misdiagnoses. Emergency physicians need to be aware of subtle or atypical presentations of illnesses such as sepsis. Carers and family can be vital informants, helping clinicians to interpret subtle signs and aid communication with people with learning disabilities. One simple approach to reasonable adjustments, as required by law, is the TEACH mnemonic: people with learning disabilities need more time (T), in a conducive environment (E), with clinicians approaching them with the right attitude (A) and an open mind. Good communication (C) is essential and clinicians must make every attempt to understand their patients and to be understood by their patients. Finally clinicians need to consider what 'help' (H) the patient and their carers or family needs. With the right approach, time and environment, emergency physicians can optimise the care delivered to people with learning disabilities to address their needs.

How to support peer resistance in adolescents with mild-to-borderline intellectual disability? Intervention development and feasibility.

BACKGROUND: Adolescents with mild-to-borderline intellectual disability face peer resistance challenges, risking harmful or dangerous situations. METHOD: We designed a peer resistance group intervention at school for adolescents with mild-to-borderline intellectual disability, tested its feasibility (N = 4, Mage = 14.1, MIQ = 78.8), adapted it, and tested it again (N = 6, Mage = 15.0, MIQ = 72.8). RESULTS: Study 1 demonstrated feasibility in recruitment, resources, and potential benefits on the distal outcome risk taking. However, attendance, obtained knowledge, and potential benefits on peer resistance, peer problems, and prosocial behaviour were suboptimal. Consequently, study 2 contained more learning by doing and individual lessons, resulting in higher attendance and greater personalization. While potential benefits on improved peer resistance measures were not observed, risk taking improved. CONCLUSIONS: Despite finding no potential benefits on peer resistance, running a peer resistance intervention for adolescents with mild-to-borderline intellectual disability at school is considered feasible.

Which factors accompany maternal acceptance-rejection in children with specific learning disabilities?

BACKGROUND: Children with specific learning disabilities (SLDs) and their parents experience many problems that may influence their interactions. The study aimed to evaluate the maternal acceptance/rejection status of children with SLDs and their associations with sociodemographic characteristics, and problem behaviors. METHODS: The Parental Acceptance-Rejection/Control Questionnaire (PARQ/C) and Strengths and Difficulties Questionnaire (SDQ) were applied to the mothers with children aged 7-17 years with a diagnosis of SLD. RESULTS: Among 266 children enrolled, the mean age was 10.2 years, and 61.7% were male, the mean score was 30.4 for warmth/affection, 25.8 for hostility/aggression, 22.9 for indifference/neglect, 16.3 for undifferentiated rejection, 95.4 for the total PARQ, and 40.8 for the control scales. Generalized linear models revealed that maternal depression, poor family income, parental smoking, and presence of dysgraphia, and poor total difficulties and prosocial scores of SDQ subscales were associated with the maternal acceptance-rejection. There was an interaction between the maternal control subscale and the school success of the child. CONCLUSION: Mothers of children with SLDs had high maternal rejection scores which were associated with unfavorable characteristics of child and family. Early detection and giving appropriate support of these cases could improve the mother's relationship with her SLD child.

'Why are we stuck in hospital?' Barriers to people with learning disabilities/autistic people leaving 'long-stay' hospital: a mixed methods study.

Background: Transforming care so that people with learning disabilities and/or autistic people can receive support at home rather than in hospital settings is a key priority, but progress has been slow. Despite significant national debate, little previous research has engaged directly with people in hospital, their families or front-line staff to understand the issues from their perspectives. Objectives: This research seeks to better understand the experiences of people with learning disabilities and/or autistic people in long-stay hospital settings, their families and front-line staff - using this knowledge to create practice guides and training materials to support new understandings and ways of working. Design: Following a structured review of the literature, we sought to work with up to 10 people with learning disabilities and/or autistic people in three case-study sites (2021-22), supplementing this with interviews with family members and commissioners; interviews/focus groups with hospital staff, social workers, advocates and care providers; information from case files; and observations of multidisciplinary meetings. Setting: Three 'long-stay' hospital settings in England. Participants: Twenty-seven people in hospital, together with families, health and social care staff and commissioners. Results: • People in hospital report widespread frustration, feel that hospital environments are not conducive to getting/staying well, and face multiple barriers to leaving hospital. Without someone to fight for them, people struggle to overcome the inertia built into our current systems and processes. • Front-line staff are equally frustrated and describe a complex and seemingly dysfunctional system which they find almost impossible to navigate. • Hospital staff from different professional backgrounds do not have a shared sense of how many people really need to be in hospital or how many people could be cared for in different settings - suggesting that different definitions, world views and professional judgements might be at play. • Hospital staff are frustrated about what they see as the difficulty of discharging people into community services, while community services are equally frustrated about what they see as a risk-averse approach which they feel can lack an up-to-date knowledge of what is possible to achieve in the community. • Despite over a decade of policy attempts to resolve these issues, very significant barriers remain. Limitations: This research explored the experiences of a small number of people, but has done so in significant depth. The research was undertaken in secure settings, during COVID and in a difficult external policy and practice context, and so has had to be very flexible and empathetic in order to build relationships and make the research possible. Future research could helpfully consider the needs of people from black and minority ethnic communities, the extent to which the experiences of people on forensic pathways are similar to/different from other people's experiences (including perspectives from the criminal justice system), and what happens to people in the long term after they leave hospital. Conclusions: Working to make the voices of people with learning disabilities and/or autistic people (as well as the staff who support them) centre stage is complex and sensitive. However, this lived experience/practice knowledge is a crucial resource if we are going to develop better policy and practice solutions in the longer term. Study registration: This study is registered at www.researchregistry.com (researchregistry6124). Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR130298) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 3. See the NIHR Funding and Awards website for further award information.

Around 2000 people with learning disabilities and/or autistic people are living in hospital. This can be for many years. This is a real problem because hospitals: are not designed to help people to lead ordinary lives; are expensive; can be far away from people's homes and families; have had a number of abuse scandals. Despite this, there is little research on why people remain stuck in such settings. In particular, previous research often fails to talk directly to people with learning disabilities, their families and staff. Unless we listen to these voices we will not find solutions to these problems. Too many people will therefore remain in hospital unnecessarily. This is sensitive work. It requires skills in working: with people who may not communicate verbally; with people who might be very angry, scared and distressed; where there can be tensions around what is best. We therefore included an experienced team who could carry out such in-depth work in a way that suits the needs of the individual. We also worked with a group of people with learning disabilities and/or autistic people and their families to help us do our work well. We found that: lots of people are still stuck in hospital; they are very frustrated and distressed; hospital is a difficult place to be while you are waiting to leave. Once you are in it is very difficult to get out; health and social care staff are also very frustrated. They find it almost impossible to help people leave hospital; hospital staff and community services find it difficult to work with each other; government has promised to solve this for more than 10 years. However, there are still lots of problems.

Evolution of neuropsychological and behavioral profile in a cohort of pediatric patients with Becker muscular dystrophy in a longitudinal study.

It has long been reported that neuropsychological deficits may be present in dystrophinopathies, specifically non-progressive cognitive impairment and a global deficit in executive functions; this neurocognitive profile has been less explored in patients with Becker than Duchenne muscular dystrophy (BMD/DMD). We conducted a longitudinal study to explore the evolution of neuropsychological and behavioural profile in a cohort of paediatric BMD. Seventeen patients with BMD without intellectual disability were assessed using a full battery of tests, including intellectual, adaptive and executive functioning, language and behavioral features. Tests were performed at baseline and after 12 months. The results showed adequate cognitive and adaptive profile with falls in Working Memory, as well as lower scores in executive functions. An improvement was observed in Processing Speed. Behavioral questionnaires confirmed a negative trend, while in normal ranges. We found a statistically significant difference between T0 and T1 in some items exploring executive functions. No statistically significant difference was observed stratifying patients by mutation site or IQ level. In conclusion, our study suggests that BMD patients have a stable neurocognitive profile, while a deflection in the executive functions may be observed. We recommend a careful monitoring to intercept learning disabilities and promptly start a multimodal rehabilitation.