The meaning of dependence and independence of older people with a disability in Ireland

The paper presents the findings of a research study carried out in Ireland in 2006 (Murphy et al., 2007) which explored the meaning of dependence and independence for older people with a disability. The research adopted a grounded theory approach; purposive sampling was used initially with some relational sampling towards the latter interviews. The sample was comprised of 143 older people with one of six disabilities: stroke (n=20), arthritis (20), depression (20), sensory disability (20), a learning disability (24), and dementia (18). All participants lived at home, some participants required high levels of help in activities of living while others were mostly independent. An interview schedule was used to guide interviews, all of which were tape recorded and transcribed. Data was collected on levels of dependence and independence using the Katz scale. Participants recorded high levels of independence in relation to transferring (93%), toileting (92%), dressing (87%), continence (87%) and feeding (98%). The main area of dependence where participants required assistance from others was with bathing (77%). The constant comparative technique was used to analyze qualitative data. The findings of the study would suggest that participants personal definition of their independence or dependence shifted relative to others and/or improvement or worsening of their capacity People were aware of the difference between independence and dependence, but these two concepts were not always perceived as opposites. It was possible to be independent and dependent at the same time. People valued being able to do things for themselves, accepted help when necessary but wanted to reciprocate when possible. Participants used varied coping strategies to regain and retain control of their lives. Strategies to promote older peoples independence and self esteem will be explored in this paper.

Els Blocs com a eina per fomentar la inclusió social de les persones amb discapacitat intel·lectual: l’experiència del bloc “Mogudes de Tresc”

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

Developing and evaluating a pictogram-based Instant Messaging service for individuals with cognitive disabilities

Information and communication technologies pose accessibility problems to people with disabilities because its design fails to take into account their communication and usability requirements. The impossibility to access the services provided by these technologies creates a situation of exclusion that reduces the self-suficiency of disabled individuals and causes social isolation, which in turn diminishes their overall quality of life. Considering the importance of these technologies and services in our society, we have developed a pictogram-based Instant Messaging service for individuals with cognitive disabilities who have reading and writing problems. Along the paper we introduce and discuss the User Centred Design methodology that we have used to develop and evaluate the pictogram-based Instant Messaging service and client with individuals with cognitive disabilities taking into account their communication and usability requirements. From the results obtained in the evaluation process we can state that individuals with cognitive disabilities have been able to use the pictogram-based Instant Messaging service and client to communicate with their relatives and acquaintances, thus serving as a tool to help reducing their social and digital exclusion situation.

The 411 Disability Disclosure: A Workbook for youth with Disabilities,

When you opened this workbook, you made an important decision! You made a decision to learn about disability disclosure and what it can mean for you. This workbook provides the expertise about disclosing a disability, and you provide the expertise about yourself. This workbook does not tell you what to do. Rather, it helps you make informed decisions about disclosing your disability, decisions that will affect your educational, employment, and social lives. In fact, making the personal decision to disclose your disability can lead to greater confidence in yourself and your choices. Disclosure is a very personal decision, a decision that takes thought and practice. Both young people with visible disabilities and those with hidden (not readily apparent to others) disabilities can benefit from using this workbook.

Wrap around analysis of the affordances and constraints for girls with physical disabilities participating in physical activities /

This is a qualitative study exploring the physical activity patterns of a group of women with physical disabilities through their lifespan. In-depth interviews were done with a group of 6 women aged 1 9 to 3 1 . The data were analyzed via content and demographic strategies. Participants in this study reported that their physical activity patterns and their experiences related to their physical activity participation changed over their lives. They were most physically active in their youth (under 14 years of age) and as they reached high school age (over 14 years of age) and to the present time, they have become less physically active. They also reported both affordances and constraints to their physical activity participation through their lifespan. In their youth, they reported affordances such as their parents' assistance, an abundance of available physical activity opportunities, and independent unassisted mobility, as all playing an important factor in their increased youth physical activity. In adulthood, the participants' reported less time, fewer opportunities for physical activity, and reliance on power mobility as significant constraints to their physical activity. The participants reported fewer constraints to being physically active in their youth when compared to adulthood. Their reasons for participation in physical activity changed from fun and socialization in their youth instead of for maintenance of health, weight, and function in adulthood. These affordances, constraints and reasons for physical activity participation were supported in the literature.

An inquiry into the barriers to participation within the fitness industry for people living with mobility challenges

This qualitative study was designed to inquire about the barriers to participation within the fitness industry for people living with mobility challenges. i\n examination of the insights, stolies~ and experiences with barriers through interviews gi ven by 4 people living with mobility challenges (PMC) formed the core of the research. An analysis of the interviews from the 4 PMC informants was performed at t\\/O levels. First, a content analysis served to identify general and specific categories related to barrier issues within various fitness environments. Secondly, in-depth thematic analyses of the entries related to the insights and stories from the 4 informants which emerged from the content analysis of the data gave rise to fi ve thematic statements. From the thematic statements a fitness industry awareness protocol was created in the fonn of a statement response questionnaire. The protocol, which was given to 4 fitness assessors/trainers, \vas used to provide a snapshot of the fitness industry's readiness to work vvith disability. Throughout the process, the four PNIC informants formed a collaborati vely involved group of coresearchers, adding their voices to the narrative of the fitness-barrier experience. The result of the study suggests that barriers to participation within the fitness industry for PMC exist in various forms and levels of severity. The results also suggest that the fitness industry needs to better prepare their people and environment for working with people with physical disabilities, such as PMC, and provide a more open and positi ve environment for participation. Within the context of any fitness-related environment, recognizing that barriers to participation do exist, and acknowledging and accepting people with disabilities for who they are as indi viduals, will serve to develop a relationship where fitness practitioners and people with disabilities can work towards creating an inviting, inclusive, accessible, and barrier-free fitness environment for all.

Experiences and meaning of the aquatic environment for individuals with physical disabilities

This study examines the experiences and meaning of physical activity in the aquatic environment to enhance social, cultural and political understanding of its impact in the lives of individuals with physical disabilities. Interviews, lived experience descriptions and artifacts present an explanation of the felt sense oftheir bodies as they engage in swimming or scuba diving. 11 Combining written, verbal and visual descriptions generated by informants provides a detailed account of the unique qualities of physical activity in the water for those with physical disabilities. Participants' descriptions highlight that context is an important aspect of physical activity among individuals with physical disabilities through discussion of motility and the role of the lived body. Aspects of the aquatic environment create a setting that facilitates forgetfulness of the lived body's presence. Instructors and participants alike will benefit from learning the difference between the object body and the lived body, listening to the body's voice as they participate in physical activity .

Breaking the silence : exploring the workplace experiences of six women with learning disabilities

In the current economic climate, employees are expected to upgrade their skills in order to remain productive and competitive in the workplace, and many women with learning disabilities! may feel doubly challenged when dealing with such expectations. Although the number of people with reported learning disabilities who enter the workforce is expected to increase, a dearth of research focuses on work-related experiences of women with learning disabilities; consequently, employers and educators often are unaware ofthe obstacles and demands facing such individuals. This qualitative narrative study sheds light on the work experiences of women with diagnosed or suspected learning disabilities. The study used semistructured interviews to explore their perspectives and reflections on learnlng in order to: (a) raise awareness of the needs of women with learning disabilities, (b) enhance their opportunities to learn in the workplace, and (c) draw attention to the need for improvement of inclusiveness in the workplace, especially for hidden disabilities. Study findings reveal that participants' learning was influenced by work relationships, the learning environments, self-determination, and taking personal responsibility. Moreover, the main accommodation requested was to have supportive and understanding work relationships and environments. Recommendations are made for future research and workplace improvements, most notably that no employees should be left behind through an employee-centered approach.

Social skills of children with different disabilities: Assessment and implications for interventions

This study characterizes the differences and similarities in the repertoire of social skills of children from 12 different categories of special educational needs: autism, hearing impairment, mild intellectual disabilities, moderate intellectual disabilities, visual impairment, phonological disorder, learning disabilities, giftedness and talent, externalizing behavior problems, internalizing behavior problems, internalizing and externalizing behavior problems and attention deficit hyperactivity disorder. Teachers of 120 students in regular and special schools, aged between 6 and 14 years old, from four Brazilian states, responded to the Social Skills Rating System. Children with ADHD, autism, internalizing and externalizing behavior problems and externalizing behavior problems presented comparatively lower frequency of social skills. The intervention needs of each evaluated category are discussed.

Els Blocs com a eina per fomentar la inclusió social de les persones amb discapacitat intel·lectual: l’experiència del bloc “Mogudes de Tresc”

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

Interpreting communication of people with profound and severe learning difficulties

The present paper highlights some of the issues involved in interpreting the communication behaviours of people with profound and multiple learning difficulties (PMLDs). Both inference and intention can play an important role in the communication process, and this raises a number of difficulties and dangers where one of the communication partners is not in a position to correct misunderstandings. The present authors discuss the importance of validating communication and pose a number of key questions to ask those who are most significant in the life of a person with PMLDs. A case study is provided that illustrates a number of these issues.

Consensus Statement: Chromosomal Microarray Is a First-Tier Clinical Diagnostic Test for Individuals with Developmental Disabilities or Congenital Anomalies

Chromosomal microarray (CMA) is increasingly utilized for genetic testing of individuals with unexplained developmental delay/intellectual disability (DD/ID), autism spectrum disorders (ASD), or multiple congenital anomalies (MCA). Performing CMA and G-banded karyotyping on every patient substantially increases the total cost of genetic testing. The International Standard Cytogenomic Array (ISCA) Consortium held two international workshops and conducted a literature review of 33 studies, including 21,698 patients tested by CMA. We provide an evidence-based summary of clinical cytogenetic testing comparing CMA to G-banded karyotyping with respect to technical advantages and limitations, diagnostic yield for various types of chromosomal aberrations, and issues that affect test interpretation. CMA offers a much higher diagnostic yield (15%-20%) for genetic testing of individuals with unexplained DD/ID, ASD, or MCA than a G-banded karyotype (similar to 3%, excluding Down syndrome and other recognizable chromosomal syndromes), primarily because of its higher sensitivity for submicroscopic deletions and duplications. Truly balanced rearrangements and low-level mosaicism are generally not detectable by arrays, but these are relatively infrequent causes of abnormal phenotypes in this population (<1%). Available evidence strongly supports the use of CMA in place of G-banded karyotyping as the first-tier cytogenetic diagnostic test for patients with DD/ID, ASD, or MCA. G-banded karyotype analysis should be reserved for patients with obvious chromosomal syndromes (e.g., Down syndrome), a family history of chromosomal rearrangement, or a history of multiple miscarriages.

Addressing internet training issues for people with Parkinson's disease

The Internet enables access to information, services, support and participation in leisure opportunities. Some populations, including people with disabilities, lack access to these opportunities through the Internet. Barriers may include finances, physical access, lack of resources and inaccessible websites. Limited access to Internet training is an additional barrier for people with communication impairments. People with Parkinson's disease (PD) may have difficulty accessing usual Internet training due to high-level language, cognitive and physical limitations. Aphasia-friendly Internet training materials were trialed with this population to investigate if participants could learn to use the Internet and would benefit from Internet training. The tutors' experience was also investigated using qualitative measures. Seven people with PD were matched with volunteer tutors. These pairs met for six Internet training lessons using training materials available as a free download from: http://dexter.shrs.uq.edu.au/cdaru/aphasiagroups/. Pre and post-test Internet skills assessments and attitudinal questionnaires were conducted. Significant differences between pre and post-test scores were found. Participants reached varying levels of independence on Internet tasks. Favorable outcomes were reported by participants, and tutors reported a positive experience. Further investigation is recommended to determine the efficacy of this approach compared with other training avenues and with other communication-impaired populations. Practical and theoretical implications for speech pathology practice are discussed.

Optimising primary care for people with dementia

This review considers key areas in primary care regarding the diagnosis of dementia. Issues surrounding assessment, policy and incentives are considered. In addition, the relevance of non-medication approaches for dementia in primary care, which aim to enhance or maintain quality of life by maximising psychological and social function in the context of existing disabilities, is deliberated. Finally, key issues about primary care medication management are considered, and relevant therapeutic strategies with recommendation for a collaborative approach that improve outcomes by linking primary and secondary healthcare services - including general practice and pharmacy - with social care needs are weighed up. A key aspect of such a collaborative approach is to support informal carers in optimising medication.