729 resultados para Persons with intellectual disabilities
Resumo:
Hilmer and Gnjidic drew attention to the pharmacological management of behavioural problems in nursing home residents, and called for a reduction in inappropriate prescribing and the development of alternative management strategies.1 We extend these concerns to another vulnerable population — people with intellectual disability. Historically, this population is one of the most medicated groups in modern society.
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There appears to be a general acceptance that individuals with intellectual disability (ID) have deficits in motivation. Yet research with infants and young children has usually identified few differences in motivation for children with ID compared with those of the same mental age who are developing typically. Studies of motivation in children with ID in the middle years of childhood or adolescence are almost non-existent. However, research conducted more than 30 years ago (Harter & Zigler, 1974) continues to be cited as evidence of motivational deficits in those with ID even though the life experiences of people with ID have changed dramatically since that time.
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Individuals with intellectual disability have a greater risk of developing dementia.The diagnosis of dementia relies on accurate testing of cognitive function however existing tests have limited utility in people whose intellectual disability is moderate or greater. A new test was developed and underwent preliminary testing to determine use across a wider ability spectrum. The Cognitive Baseline & Screener for People with Intellectual Disability (CBS-ID) was administered to a sample of 17 dyads (n=34) (people with intellectual disability (who completed CBS-ID) and caregivers (who provided an independent rating of function)).The CBS-ID performed well on several usability metrics across all intellectual disability level and was highly correlated with existing measures of cognitive function to which it was compared.Further research with a larger sample is needed to assess the test's ability to detect change in cognition over time & determine if it aids the process of diagnosing dementia.
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Numerous disruptions and barriers are encountered by persons with mobility-related disabilities in their daily’s experience of going to work and the pressure these exert on gaining and maintaining their employment. The nature and extent of their difficulties to workforce participation entails a requirement for extensive planning and also strategies to address problems of being stranded (for example, when the bus they are waiting for is not accessible). This paper presents the conceptualisation and methods of understanding workforce participation as a journey, and a discussion on the role digital technologies play in helping people with mobility-related disabilities in their journeys to work and mitigating disruptions when these occur. This is presented through an initial case study that helped identify the sequence of supports needed to be in place to make the work journey possible. Importantly, the paper also highlights points of intervention for the use of digital technologies and where design can potentially help to enhance accessibility to work for people with mobility-related impairments by making journeys to work seamless.
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The purpose of this study was to estimate the prevalence and distribution of reduced visual acuity, major chronic eye diseases, and subsequent need for eye care services in the Finnish adult population comprising persons aged 30 years and older. In addition, we analyzed the effect of decreased vision on functioning and need for assistance using the World Health Organization’s (WHO) International Classification of Functioning, Disability, and Health (ICF) as a framework. The study was based on the Health 2000 health examination survey, a nationally representative population-based comprehensive survey of health and functional capacity carried out in 2000 to 2001 in Finland. The study sample representing the Finnish population aged 30 years and older was drawn by a two-stage stratified cluster sampling. The Health 2000 survey included a home interview and a comprehensive health examination conducted at a nearby screening center. If the invited participants did not attend, an abridged examination was conducted at home or in an institution. Based on our finding in participants, the great majority (96%) of Finnish adults had at least moderate visual acuity (VA ≥ 0.5) with current refraction correction, if any. However, in the age group 75–84 years the prevalence decreased to 81%, and after 85 years to 46%. In the population aged 30 years and older, the prevalence of habitual visual impairment (VA ≤ 0.25) was 1.6%, and 0.5% were blind (VA < 0.1). The prevalence of visual impairment increased significantly with age (p < 0.001), and after the age of 65 years the increase was sharp. Visual impairment was equally common for both sexes (OR 1.20, 95% CI 0.82 – 1.74). Based on self-reported and/or register-based data, the estimated total prevalences of cataract, glaucoma, age-related maculopathy (ARM), and diabetic retinopathy (DR) in the study population were 10%, 5%, 4%, and 1%, respectively. The prevalence of all of these chronic eye diseases increased with age (p < 0.001). Cataract and glaucoma were more common in women than in men (OR 1.55, 95% CI 1.26 – 1.91 and OR 1.57, 95% CI 1.24 – 1.98, respectively). The most prevalent eye diseases in people with visual impairment (VA ≤ 0.25) were ARM (37%), unoperated cataract (27%), glaucoma (22%), and DR (7%). One-half (58%) of visually impaired people had had a vision examination during the past five years, and 79% had received some vision rehabilitation services, mainly in the form of spectacles (70%). Only one-third (31%) had received formal low vision rehabilitation (i.e., fitting of low vision aids, receiving patient education, training for orientation and mobility, training for activities of daily living (ADL), or consultation with a social worker). People with low vision (VA 0.1 – 0.25) were less likely to have received formal low vision rehabilitation, magnifying glasses, or other low vision aids than blind people (VA < 0.1). Furthermore, low cognitive capacity and living in an institution were associated with limited use of vision rehabilitation services. Of the visually impaired living in the community, 71% reported a need for assistance and 24% had an unmet need for assistance in everyday activities. Prevalence of ADL, instrumental activities of daily living (IADL), and mobility increased with decreasing VA (p < 0.001). Visually impaired persons (VA ≤ 0.25) were four times more likely to have ADL disabilities than those with good VA (VA ≥ 0.8) after adjustment for sociodemographic and behavioral factors and chronic conditions (OR 4.36, 95% CI 2.44 – 7.78). Limitations in IADL and measured mobility were five times as likely (OR 4.82, 95% CI 2.38 – 9.76 and OR 5.37, 95% CI 2.44 – 7.78, respectively) and self-reported mobility limitations were three times as likely (OR 3.07, 95% CI 1.67 – 9.63) as in persons with good VA. The high prevalence of age-related eye diseases and subsequent visual impairment in the fastest growing segment of the population will result in a substantial increase in the demand for eye care services in the future. Many of the visually impaired, especially older persons with decreased cognitive capacity or living in an institution, have not had a recent vision examination and lack adequate low vision rehabilitation. This highlights the need for regular evaluation of visual function in the elderly and an active dissemination of information about rehabilitation services. Decreased VA is strongly associated with functional limitations, and even a slight decrease in VA was found to be associated with limited functioning. Thus, continuous efforts are needed to identify and treat eye diseases to maintain patients’ quality of life and to alleviate the social and economic burden of serious eye diseases.
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Background For families of children diagnosed with autism spectrum disorder (ASD) getting a diagnosis is a traumatic experience on which future care and education plans for the child depend. In this paper parental experiences of diagnosis and forward planning for children with ASD are reported. Method This paper is part of a large cross-sectional study conducted in Northern Ireland and the Republic of Ireland that assessed the needs and experiences of parents of children diagnosed with ASD. Questionnaires were designed and completed by 95 parents, reporting on 100 children, as well as 67 multi-disciplinary professionals. Results Findings confirm that diagnostic and planning processes are extremely stressful for parents, that statutory diagnosis takes a long time, that care and education plans do not include full parental participation, and that reviews of plans do not consistently include intervention data. Conclusion Policy and practice implications of these findings are important for future revisions of diagnostic tools and manuals.
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This article provides a reflection on my past practice as Creative Director of The Mixed Peppers Theatre Arts Training Programme. Drawing upon discourses of Disability Studies it considers how this ostensibly emancipatory project that sought to provide access to theatre activity for young people with physical disabilities living in Northern Ireland was flawed, and was eventually disbanded, partly due to a failure on the part of its non-disabled leadership to address imbalances of power in its relationship with its young disabled constituency. The article is framed within a survey of recent debates that focus upon the historical lack of a sustained, indigenous, disability-led theatre activity in Northern Ireland and the recent efforts by non-disabled professional arts practitioners to establish such activity in the region. It offers, as an exemplar to current discussion, an analysis of how the choice and agency of the young members of The Mixed Peppers were compromised by the well-meaning but potentially oppressive practices of its leadership. It questions whether the project was unduly influenced by parental desire to see their disabled children `normalized' in a high-profile theatrical production. Finally, it considers how The Mixed Peppers' institutional situation, as a project controlled and administered by a disability charity, was implicated in the premature demise of the initiative.
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Multidisciplinary practice has become an accepted approach in many education and social and health care fields. In fact, the right to a multidisciplinary assessment is enshrined in the United Nations Convention of the Rights for Persons with Disabilities (United Nations, 2007). In order to avert a 'one size fits all' response to particularly heterogeneous diagnoses, such as autism spectrum disorders (ASD), the National Institute for Clinical Excellence (NICE) recommends multidisciplinary input. Yet, multidisciplinarity lacks empirical evidence of effectiveness, is fraught with conceptual difficulties and methodological incompatibilities, and therefore there is a danger of resorting to an ill-defined eclectic 'hodgepodge' of interventions. Virtually all evidence-based interventions in autism and intellectual disabilities are behaviourally based. Not surprisingly, therefore, professionals trained in behaviour analysis to international standards are increasingly becoming key personnel in multidisciplinary teams. In fact, professionals from a range of disciplines seek training in behaviour analysis. In this article we brought together a multidisciplinary group of professionals from education, health, and social care, most of whom have a dual qualification in an allied health, social care, or educational profession, as well as in behaviour anlaysis. Together we look at the initial training in these professions and explore how behaviour analysis can offer a common and coherent conceptual framework for true multidisciplinarity, based on sound scientific knowledge about behaviour, without resort to reifying theories. We illustrate how this unifying approach can enhance evidence-based multidisciplinary practice so that 'one size' will fit all. Copyright © Australian Psychological Society Ltd 2014.
Resumo:
Objective: Most of what we know about children with autism spectrum disorder (ASD) is based on post-diagnostic, retrospective, self-select studies. Oftentimes, there is no direct comparison between trajectories of children with ASD and children without ASD.
Methods: To circumvent both of these problems, the present secondary data analysis utilised a large-scale longitudinal general population survey of children born in the year 2000 (i.e. the Millennium Cohort Study; MCS; n=18522). Bi-annual MCS data were available from five data sweeps (children aged 9 months to 11 years of age).
Results: Pre-diagnostic data showed early health problems differentiated children later diagnosed with autism from non-diagnosed peers. Prevalence was much higher than previously estimated (3.5% for 11-year olds). Post-diagnosis, trajectories deteriorated significantly for the children with ASD and their families in relation to education, health and economic wellbeing.
Conclusion: These findings raise many issues for service delivery and the rights of persons with disabilities and their families.
Resumo:
This paper will explore from a ‘child’s rights perspective’ the ‘right’ of children with autistic spectrum disorder (ASD) to appropriate and meaningful education.Human ‘rights’ principles within international law will be evaluated in relation to how they have been interpreted and applied in relation to achieving this ‘right’. The International Convention of the Rights of the Child (United Nations in Convention on the rights of the child, office of the high commissioner, United Nations, Geneva, 1989) and the convention on the rights of the person with disability (United Nations in Convention on the rights of person’s with disabilities and optional protocol, office of the high commissioner, United Nations, Geneva, 2006) amongst others will be utilised to argue the case for ‘inclusive’educational opportunities to be a ‘right’ of every child on the autistic spectrum. The efficacy of mainstream inclusion is explored, identifying the position that a ‘one size fits all’model of education is not appropriate for all children with ASD.
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Both obesity and being underweight have been associated with increased mortality. Underweight, defined as a body mass index (BMI) ≤ 18.5 kg per m(2) in adults and ≤ -2 standard deviations from the mean in children, is the main sign of a series of heterogeneous clinical conditions including failure to thrive, feeding and eating disorder and/or anorexia nervosa. In contrast to obesity, few genetic variants underlying these clinical conditions have been reported. We previously showed that hemizygosity of a ∼600-kilobase (kb) region on the short arm of chromosome 16 causes a highly penetrant form of obesity that is often associated with hyperphagia and intellectual disabilities. Here we show that the corresponding reciprocal duplication is associated with being underweight. We identified 138 duplication carriers (including 132 novel cases and 108 unrelated carriers) from individuals clinically referred for developmental or intellectual disabilities (DD/ID) or psychiatric disorders, or recruited from population-based cohorts. These carriers show significantly reduced postnatal weight and BMI. Half of the boys younger than five years are underweight with a probable diagnosis of failure to thrive, whereas adult duplication carriers have an 8.3-fold increased risk of being clinically underweight. We observe a trend towards increased severity in males, as well as a depletion of male carriers among non-medically ascertained cases. These features are associated with an unusually high frequency of selective and restrictive eating behaviours and a significant reduction in head circumference. Each of the observed phenotypes is the converse of one reported in carriers of deletions at this locus. The phenotypes correlate with changes in transcript levels for genes mapping within the duplication but not in flanking regions. The reciprocal impact of these 16p11.2 copy-number variants indicates that severe obesity and being underweight could have mirror aetiologies, possibly through contrasting effects on energy balance.
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Movement education and adapted physical activity are content areas not addressed in pre-service education or in-service training for Ontario practitioners working with individuals with disabilities in physical environments. Consequently, physical activity is often overlooked by service providers in programming and intervention for exceptional young learners. A formative evaluation, multiple-case study design was employed in this research in which a purposeful sample of expert practitioners performed a guided, descriptive evaluation of a three-day professional development workshop curriculum designed to supplement these areas lacking in professional preparation within their respective cohorts. Case-by-case and comparative analyses illustrated the inherent assumptions and societal constraints which prioritize the structure of professional development within the education system and other government organizations providing services for school-aged persons with disabilities in Ontario. Findings, discussed from a critical postmodern perspective, illustrate the paradoxical nature of Western values and prevailing mind/body dichotomy that guide professional practice in these fields.
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Typical employment options for people with developmental disabilities are insufficient. Most employment opportunities that are community-based provide typical workplace and geographical inclusion but tend not to support social inclusion and "belonging". This study explored the innovative employment alternative of social businesses and considered this form of employment for persons with a developmental disability as a viable avenue for meaningful work and social inclusion. A total of six business partners with a developmental disability were interviewed; two partners from three separate worker owned businesses. The partners' descriptions of their job and their workplace composed the interpretative findings. The social businesses provided an avenue for this group of people who tend to be segregated in isolated workshops or marginalized in mainstream work environments and who feel a sense of being "outsiders" to participate in meaningful work in community settings. This group of partners described their job as authentic "work" and discussed the many skills and the work ethic learned from their employment opportunity. In addition to the instrumental aspects of the job, the partners also discussed the group autonomy and self-determination of being their own "bosses". The partners confidently expressed feeling valued, understood in the context of others with similar life experiences, attached to the workplace and connected to a larger community as important outcomes of their businesses. These criteria of social inclusion (Hall, 2010) were complemented by teamwork, friendship and ultimately, with a feeling of being genuine "insiders". Replication of this innovative employment model would be recommended for groups of marginalized people with DD in other geographic areas.
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Introduction: the statistical record used in the Field Academic Programs (PAC for it’s initials in Spanish) of Rehabilitation denotes generalities in the data conceptualization, which complicates the reliable guidance in making decisions and provides a low support for research in rehabilitation and disability. In response, the Research Group in Rehabilitation and Social Integration of Persons with Disabilities has worked on the creation of a registry to characterize the population seen by Rehabilitation PAC. This registry includes the use of the International Classification of Functioning, Disability and Health (ICF) of the WHO. Methodology: the proposed methodology includes two phases: the first one is a descriptive study and the second one involves performing methodology Methontology, which integrates the identification and development of ontology knowledge. This article contextualizes the progress made in the second phase. Results: the development of the registry in 2008, as an information system, included documentary review and the analysis of possible use scenarios to help guide the design and development of the SIDUR system. The system uses the ICF given that it is a terminology standardization that allows the reduction of ambiguity and that makes easier the transformation of health facts into data translatable to information systems. The record raises three categories and a total of 129 variables Conclusions: SIDUR facilitates accessibility to accurate and updated information, useful for decision making and research.
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La inclusió social de les persones amb discapacitat és avui encara un tema pendent, ja que les activitats socials i interpersonals en el col·lectiu són escasses. Diversos estudis demostren que, malgrat es potencia la inserció laboral de les persones amb discapacitat en entorns ordinaris, no es donen millores substancials en altres qüestions relatives a la seva inclusió social