Care management in a French cohort with Down syndrome from the AnDDI-Rares/CNSA study.

Down syndrome (DS) is a genetic neurodevelopmental disorder. In individuals with DS, a multidisciplinary approach to care is required to prevent multiple medical complications. The aim of this study was to describe the rehabilitation, medical care, and educational and social support provided to school-aged French DS patients with varying neuropsychological profiles. A mixed study was conducted. Quantitative data were obtained from a French multicentre study that included patients aged 4-20 years with diverse genetic syndromes. Qualitative data were collected by semi-structured face-to-face interviews and focus groups. Ninety-five DS subjects with a mean age of 10.9 years were included. Sixty-six per cent had a moderate intellectual disability (ID) and 18.9% had a severe ID. Medical supervision was generally multidisciplinary but access to medical specialists was often difficult. In terms of education, 94% of children under the age of six were in typical classes. After the age of 15, 75% were in medico-social institutions. Analysis of multidisciplinary rehabilitation conducted in the public and private sectors revealed failure to access physiotherapy, psychomotor therapy and occupational therapy, but not speech therapy. The main barrier encountered by patients was the difficulty accessing appropriate facilities due to a lack of space and long waiting lists. In conclusion, children and adolescents with DS generally received appropriate care. Though the management of children with DS has been improved considerably, access to health facilities remains inadequate.

Internet opportunities and risks for adolescents with intellectual disabilities: A comparative study of parents' perceptions.

Background: In contemporary society internet and digital competencies are used to perform activities.Aim: The aim of this study is to investigate opportunities and risks of internet use as perceived by the parents of adolescents with intellectual disabilities (ID) in comparison with a national reference group of parents of adolescents.Methods: This was a cross-sectional study with group comparisons using a national survey. Analyses were carried out using Fisher's exact test and logistic regression to control for confounding factors.Results: A significantly higher proportion of parents of adolescents with ID perceive opportunities associated with internet use and playing games, and a lower proportion perceive risks with negative consequences, compared with the reference group. Significantly more parents of adolescents with ID perceive their adolescent never use smartphones and social media compared with the reference group. Fewer parents of adolescents with ID have concerns about online risks for their adolescents compared with the reference group.Conclusion and Significance: The results provide new knowledge for occupational therapists to support positive risk-taking in internet-use for adolescents with ID, in collaboration with their parents, to enable the development of digital competencies and digital participation in everyday life in a digitalised society.

A Description of Parent Input in IEP Development Through Analysis IEP Documents.

Parent input in individualized education program (IEP) development is the clear expectation in U.S. education law. Every IEP team must include parents, and their input must be equally considered when developing IEPs. The present study used content analysis of 88 IEPs of students with intellectual and developmental disabilities to explore team membership, concerns parents raised during IEP meetings, and evidence that parent concerns and priorities are reflected in IEP goals and supplementary aids and services. Findings reveal that although parents express a range of concerns and priorities, these are translated into goals or services only two thirds of the time. We provide implications of these findings for research and practice.

Feasibility Study of a Menstrual Hygiene Management Intervention for People with Intellectual Impairments and Their Carers in Nepal.

Background: The Bishesta campaign is a menstrual hygiene management (MHM) intervention developed to meet the specific needs of people with intellectual impairments and their carers. It was designed and delivered in the Kavre district, Nepal. This paper explores the campaign's feasibility and acceptability. Methods: The Bishesta campaign was delivered to ten people with an intellectual impairment and their eight carers. Data on the feasibility and acceptability of the intervention was collected through: Structured questionnaire to participants before and after the intervention, process monitoring data, post-intervention in-depth interviews with all carers, observation of people with intellectual impairments, key informant interviews with all facilitators and staff involved in the campaign, as well as ranking of the perceived appropriateness and acceptability of campaign components by carers and facilitators. Results: The Bishesta campaign was acceptable for the target groups, facilitators, and implementers. It was largely delivered with fidelity. Participants used most of the campaign components; these made the target behaviours attractive and enabled participants to carry them out with ease. There were improvements across all target behaviours. The focus of this study was feasibility, not limited-efficancy; however, indicative positive outcomes from this small sample were observed, such as an increase in young people's levels of confidence, comfort, and autonomy during menstruation. Conclusion: Within the sample, the Bishesta campaign appears to be a feasible intervention to ensure that one of the groups most vulnerable to exclusion from MHM interventions is not left behind.

Perspectives on Inclusive Education of Preschool Children with Autism Spectrum Disorders and Other Developmental Disabilities in Iran.

Background: Iranian children with disabilities invariably attend special schools and many may be excluded from education entirely. Information on preschool education is limited but probably mirrors the situation in schools. There is a lack of information in terms of parental preferences for schooling and teachers' experiences of inclusion in Iran. Method: Two feasibility studies were undertaken; one with 89 parents of children with autism or intellectual disabilities, and another with the head teachers of two private kindergartens. Results: Two-thirds of parents favored inclusive schools; most parents whose children had autism or were verbally proficient were in favor of their child attending ordinary schools, even if their child had been placed in a specialist preschool facility. The head teachers justified inclusion in terms of children's rights but identified three main challenges: coping with the diverse level of functioning, the need for special devices and training of teachers, and challenging the negative reactions of parents of non-disabled children. Conclusions: Further exploration of the views of those who have experienced inclusion would further challenge existing practices. Moreover, the training and preparation of teachers is key to reforming schools. However, wider social values and beliefs towards disabilities also need to change.

Supporting mentors working with students with intellectual disabilities in higher education.

Project Panther LIFE is an inclusive postsecondary transition program for students with intellectual disabilities providing university access and participation with the primary goal of employment at program completion. Students in the program receive support from their academic mentors and peer coaches during the academic year. This study examines the skills and activities mentors use during their weekly sessions with students with intellectual disabilities and identifies areas in which mentors may require further support or training. Data analysis revealed major themes related to inclusion, self-determination, and adaptive behavior skills. Upon review of the data, we suggest that mentors need ongoing support from transition programs especially in areas related to encouraging self-advocacy and supporting time management.

Special Needs: Scholastic Disability Accommodations from K-12 and Transitions to Higher Education.

The number of students entering post-secondary education with already diagnosed disabilities is on the rise and mirrors the percentage of children in primary and secondary public schools with registered disabilities. Requirements governed by civil rights laws fundamentally change when comparing the support schools have to provide to students during primary and secondary school with disability access in postsecondary higher education. Psychiatrists may be asked to assist with scholastic disability at any stage of education and need to know about available supports and the parameters of disability in schools. Specifically, special attention should to be made in preparation for transition to postsecondary education when prior accommodations exist.

A quantitative assessment of educational integration of students with Down syndrome in the Netherlands.

BACKGROUND: In the Netherlands, as in many other countries, there are indications of an inclusive school policy for children with Down syndrome. However, there is a lack of studies that evaluate to what extent this policy has actually succeeded in supporting the mainstreaming of these students. METHOD: For the period 1984-2011, the number of children with Down syndrome entering regular education and the percentage of children still in regular education after 1-7 years were estimated on basis of samples from the database of the Dutch Down Syndrome Foundation. These estimations were combined with historical demographic data on the total number of children with Down syndrome in primary school age. Validity of the model was examined by comparison of the model-based estimations of numbers and percentages in regular education with relevant available empirical data from the Dutch Ministry of Education and from Dutch special schools. RESULTS: The percentage of all children with Down syndrome in the age range 4-13 in regular primary education has risen from 1% or 2% (at the very most about 20 children) in 1986-1987, to 10% (about 140 children) in 1991-1992, to 25% (about 400) in 1996-1997, to 35% (about 650) in 2001-2002 and to 37% (about 800) since 2005-2006. The proportional increase stopped in recent years. CONCLUSION: During the 1980s and 1990s, clearly more and more children with Down syndrome were in regular education, being supported by the then existing ad hoc regulations aimed at providing extra support in regular education. In the Netherlands, in 2003, these temporary regulations were transformed into structural legislation for children with disabilities. With regard to the mainstreaming of students with Down syndrome, the 2003 legislation has consolidated the situation. However, as percentages in regular education stayed fairly constant after 2000, it has failed to boost the mainstreaming of children with Down syndrome. The results of this study are discussed in the context of national and international legislation and educational policy.

[Mental capacity and the incidence of children with mental retardation in preschool education institutions of compensating type].

The study is devoted to the investigation of the mental capacity of children 6-7 years old with mental retardation in preschool educational institutions of compensating type. Under observation there were 160 children, out of them - 87 patients with mental retardation and 73 mental age-matched cases - the control group. The features of the dynamics of task performance in children with mental retardation in comparison with the cases from control group have been revealed. Indices of their mental capacity were found to be in dependence on the organization of upbringing and education space, which can be achieved only in a preschool educational institutions of compensating type. Mental retardation in children was found to be in a greater degree associated with somatogenic causes.

The effects of a Special Olympics Unified Sports Soccer training program on anthropometry, physical fitness and skilled performance in Special Olympics soccer athletes and non-disabled partners.

The study investigated the effects of a Special Olympics (SO) Unified Sport (UNS) soccer program on anthropometry, physical fitness and soccer skills of male youth athletes with and without intellectual disabilities (ID) who participated in a training group (TRG) and in a comparison group (CG) without specific training. Youth with ID (WID) were randomly selected out of all the students between the ages 12 and 15, with a diagnosis of educable mental retardation and no secondary disabilities, who were attending a special education school. Participants without ID (WoID) were randomly selected from a regular secondary school out of the same age groups of male students. All participants were given permission by their parents or guardians to participate in the study. Participants in the TRG included 23 youth WID and 23 youth WoID. Mean ages were = 14.1 (SD = 1.1) and 13.2 (SD = 0.79) respectively. Fifteen WID, and 15 WoID comprised the CG. Mean ages were 14.51 (SD = 0.81) and 13.78 (SD = 0.49) respectively. Prior to and following the program measurements were conducted, and data were collected on students' anthropometric and fitness components of the Brockport physical fitness test as well as a soccer skill performance based on the SO soccer skill test. Participants in the TRG trained 8 weeks, 1.5h per session, three times per week, in an after-school soccer program. CG did not participate in any sports program outside of the school physical education class. Dependent t tests and effect size calculations revealed that SO athletes and non-disabled partners scored significantly higher with regard to physical fitness and football skills in most variables compared with their CG. This Unified Program was successful in increasing fitness and soccer skill performance of youth WID as well as of those WoID.

Secondary students with moderate/severe intellectual disability: considerations of curriculum and post-school outcomes from the National Longitudinal Transition Study-2.

BACKGROUND: A conversation currently exists regarding secondary curriculum (e.g. academics, functional) for students with moderate/severe intellectual disability (ID) without a large research base connecting curriculum to outcomes. METHOD: This study represented a secondary analysis of the National Longitudinal Transition Study-2 (NLTS2) data to understand in-school curriculum and educational programming for secondary students with moderate/severe ID as well as the relationship between curriculum and students' post-school outcomes. Statistical procedures such as frequency distributions, a significance test and logistic regression were utilised to analyse secondary data from the NLTS2. RESULTS: The results suggest the majority of students with moderate/severe ID received a functional curriculum as well as instruction in core content areas; however, their instruction primarily occurred in pull-out educational settings. The students also reported low rates for the post-school outcomes examined (i.e. independent living, employment and post-secondary attendance). Finally, curriculum (functional vs. academics) was not related to any post-school outcome examined (e.g. independent living, employment). CONCLUSIONS: The data suggest additional research is needed to understand what factors impact post-school outcomes for students with moderate/severe ID. Yet - and regardless of the lack of impact - additional work is needed to help students achieve better post-school outcomes, including further examination of curriculum and instructional environments.

Use of activity schedule to promote independent performance of individuals with autism and other intellectual disabilities: a review.

A literature review was conducted on the effectiveness of activity schedules. Twenty three studies that a) were peer-reviewed, b) were experimental, c) implemented activity schedule as a primary intervention, d) incorporated multiple activities, and e) aimed to teach learners to self-manage individual schedules were included in the review. The results demonstrated the effectiveness of activity schedules for promoting independence and self-management skills for a broad range of individuals with intellectual disabilities. An increase in engagement and on-task behavior was the most frequently cited outcome, followed by independent task initiation or transition and self-scheduling. Failure to include social validity measures and caregivers as interventionists were discussed. A corpus of the reviewed studies supports applications of activity schedule in school and (group) home settings.

Psychopathology, families, and culture: autism.

Autism spectrum disorders (ASDs) are now considered to be the most common of the developmental disorders, although the effect of cultural influences on the diagnosis and treatment of ASDs has received limited attention. The existing literature on this topic suggests that both macro-level and microlevel cultural factors can affect the characterization, diagnosis, and treatment of ASDs. As a result, it is important for clinicians to consider cultural factors throughout the diagnostic, treatment planning, and intervention implementation processes. In this article, cultural influences on the prevalence of autism and the diagnostic and treatment processes are reviewed and synthesized through a consideration of the developmental context and through clinical practice suggestions.

A educação especial na perspectiva da inclusão escolar: o atendimento educacional especializado para alunos com deficiência intelectual

Este fascículo foi concebido para subsidiar o Atendimento Educacional Especializado voltado para os alunos com deficiência intelectual. Detalha o trabalho desse professor o qual gravita em torno de três polos: gestão dos processos de aprendizagem, avaliação e acompanhamento. A gestão da aprendizagem inclui os processos de aprendizagem de seu aluno no interior da sala multifuncional e fora dela; a avaliação incide sobre as possibilidades e as dificuldades de aprendizagem em interação com o meio escolar e familiar; o acompanhamento implica no desenvolvimento de ações específicas visando à evolução do aluno e à transformação das ações dos diferentes atores que atuam com esse aluno

Sexual assault prevention for women with intellectual disabilities: a critical review of the evidence.

Although research has indicated that women with intellectual disabilities are significantly burdened with sexual violence, there is a dearth of sexual assault prevention research for them. To help address this serious knowledge gap, the authors summarize the findings of general sexual assault prevention research and discuss its implications for women with intellectual disabilities. Next, the authors evaluate interventions published in both the peer-reviewed and non-peer-reviewed literature from a comprehensive search of the scientific literature as well as from recommendations made by disability and sexual assault service providers in the United States. The results of this comprehensive literature review found 4 sexual violence prevention programs that were designed for participants with intellectual disabilities and that had undergone some type of evaluation. Each program and its evaluation are critically and systematically reviewed. Based on the authors' review of these programs as well as the wider literature, they conclude with recommendations and discuss the work that remains to decrease the incidence of sexual violence against women with intellectual disabilities.