Diabetes in people with an intellectual disability : a systematic review of prevalence, incidence and impact.

To establish the prevalence and incidence of Type 1 and Type 2 diabetes in people with an intellectual and developmental disability and determine their impact on health and well-being and to appraise the evidence available to inform good practice in diabetes management for people with intellectual and developmental disabilities.

Virtual worlds for people with autism spectrum disorder: a case study in Second Life

PURPOSE: The purpose of this study is to explore the use of virtual worlds by people with autism spectrum disorder (ASD), with a particular focus on the virtual world Second Life™. METHOD: Case study methodology was selected to explore the experiences of Wolf, a participant with ASD, in Second Life. Wolf participated in three in-depth interviews. The interviews were analyzed using a content analysis to identify themes and sub-themes. RESULTS: Analysis identified four main themes: social factors and communication, empowerment, virtual world versus physical world, and social cues and body language. CONCLUSION: Anecdotally Wolf's experiences suggest that people with ASD enjoy using a virtual world and may feel more comfortable communicating in the virtual world context than the physical world. Virtual worlds offer a venue for people with ASD to be a part of a virtual society, lowers communication barriers experienced in the physical world, and gives the participant a unique opportunity to create and maintain friendships. Virtual worlds offer an arena for people with ASD to meet their peers on equal terms, not being dependent on social cues, which in the physical world can be a barrier for communication for this group. Further research in this area is required. Implications for Rehabiliation People with autism spectrum disorder enjoy using a virtual world and may feel more comfortable communicating in the virtual world context than the physical world. Virtual worlds offer a venue for people with autism spectrum disorder to be a part of a virtual society. Virtual worlds offer an arena for people with autism spectrum disorder to meet their peers on equal terms, not being dependent on social cues, which in the physical world can be a barrier for this group.

Review of the literature on the use of social media by people with traumatic brain injury (TBI)

Purpose: To review the literature relating to use of social media by people with a traumatic brain injury (TBI), specifically its use for social engagement, information exchange or rehabilitation.

Method: A systematic review with a qualitative meta-synthesis of content themes was conducted. In June 2014, 10 databases were searched for relevant, peer-reviewed research studies in English that related to both TBI and social media.

Results: Sixteen studies met the inclusion criteria, with Facebook™ and Twitter™ being the most common social media represented in the included studies. Content analysis identified three major categories of meaning in relation to social media and TBI: (1) risks and benefits; (2) barriers and facilitators; and (3) purposes of use of social media. A greater emphasis was evident regarding potential risks and apparent barriers to social media use, with little focus on facilitators of successful use by people with TBI.

Conclusions: Research to date reveals a range of benefits to the use of social media by people with TBI however there is little empirical research investigating its use. Further research focusing on ways to remove the barriers and increase facilitators for the use of social media by people with TBI is needed. Implications for Rehabilitation: Communication disabilities following traumatic brain injury (TBI) can be wide-ranging in scope and social isolation with loss of friendships after TBI is common. For many people, social media is rapidly becoming a usual part of everyday communication and its use has the potential to increase communication and social participation for people with TBI.There is emerging evidence and commentary regarding the perceived benefits and risks, barriers and facilitators and purposes of use of social media within the TBI population.Risks associated with using social media, and low accessibility of social media sites, form barriers to its use. Facilitators for social media use in people with TBI include training the person with TBI and their communication partners in ways to enjoy and use social media safely.There is minimal rigorous evaluation of social media use by people with TBI and scant information regarding social media use by people with communication disabilities after TBI. Further investigation is needed into the potential benefits of social media use on communication, social participation and social support with the aim of reducing social isolation in people with TBI.

Assumptions of decision-making capacity: the role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first legally binding instrument explicitly focused on how human rights apply to people with disability. Amongst their obligations, consistent with the social model of disability, the Convention requires signatory nations to recognise that “…persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life” and mandates signatory nations to develop “…appropriate measures to provide access by persons with disability to the support they may require in exercising their legal capacity”. The Convention promotes supported decision-making as one such measure. Although Australia ratified the UNCRPD in 2008, it retains an interpretative declaration in relation to Article 12 (2, 3, 4), allowing for the use of substituted decision-making in situations where a person is assessed as having no or limited decision-making capacity. Such an outcome is common for people with severe or profound intellectual disability because the assessments they are subjected to are focused on their cognition and generally fail to take into account the interdependent nature of human decision-making. This paper argues that Australia’s interpretative declaration is not in the spirit of the Convention nor the social model of disability on which it is based. It starts from the premise that the intention of Article 12 is to be inclusive of all signatory nations’ citizens, including those with severe or profound cognitive disability. From this premise, arises a practical need to understand how supported decision-making can be used with this group. Drawing from evidence from an empirical study with five people with severe or profound intellectual disability, this paper provides a rare glimpse on what supported decision-making can look like for people with severe or profound intellectual disability. Additionally, it describes the importance of supporters having positive assumptions of decision-making capacity as a factor affecting supported decision-making. This commentary aims to give a focus for practice and policy efforts for ensuring people with severe or profound cognitive disability receive appropriate support in decision-making, a clear obligation of signatory nations of the UNCRPD. A focus on changing supporter attitudes rather than placing the onus of change on people with disability is consistent with the social model of disability, a key driver of the UNCRPD.

Indicators for monitoring the implementation of the Convention on the Elimination of all Forms of Discrimination against Woman

Includes bibliography

How federal personnel can support the Javits-Wagner-O'Day (JWOD) program : JWOD handbook for working with the Committee for Purchase from People Who Are Blind or Severely Disabled, NIB and NISH.

Mode of access: Internet.

Supportive care needs of people with brain tumours and their carers

Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework analysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

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.

Hogyan bonthatók le a látható és láthatatlan falak? – Kooperatív kutatás a megváltozott munkaképességűek foglalkoztatásával kapcsolatos mentális gátak lebontásáról (How to break down the visible and unvisible walls? – A cooperative research about the breaking down of mental barriers of the employment of disabled people)

A szerzők tanulmányukban egy kooperatív kutatási projekt eredményeit mutatják be, melyet emberierőforrás- menedzsment szakos master hallgatókkal folytattak megváltozott munkaképességűek foglalkoztatásával kapcsolatban. Magyarországon rendkívül magas a munkanélküliség a fogyatékkal élők körében, és a szerzők úgy vélik, hogy a HR-szakértőknek kulcsfontosságú szerepük van abban, hogy a foglalkoztatási korlátokat fenntartják-e, vagy változtatnak a jelenlegi helyzeten. A kritikai emberierőforrás-fejlesztés és a kritikai pedagógia hagyományait követve kutatásuk kettős célt tűzött ki. Céljuk volt egyrészt a jövő HRszakembereinek megváltozott munkaképességűek foglalkoztatásával kapcsolatos mentális mintázatainak, attitűdjeinek és hiedelmeinek feltárása, amelyek az elnyomás, diszkrimináció vagy kizsákmányolás gyökerei lehetnek. Másrészt pedig a kooperatív kutatás alkalmazásával a hallgatók emancipációját szándékoztak előmozdítani, továbbá az üzleti felsőoktatást uraló pozitivista filozófiát és értékrendszert kívánták kihívás elé állítani, s ily módon segíteni egy kritikusabb világnézet kibontakozását. ________ In this paper we present the results of a cooperative inquiry research project undertaken with Master students specialized in Human Resource Management on the employment of disabled people. Unemployment among people with disabilities is very high in Hungary and HR professionals have a key role in maintaining or reducing employment barriers and modifying the present situation. Following the tradition of critical Human Resource Development and critical pedagogy, the aim of the research project was twofold. First, we aimed to reveal the mental patterns, attitudes and beliefs of future HR professionals to the employment of people with disabilities, which might become roots causes of domination, discrimination or exploitation. Secondly, through applying cooperative inquiry, researchers aimed to emancipate students and challenge the positivist philosophy and value system which usually dominate business education and thereby engender a more critical worldview.

Evaluating the Effectiveness of Discrete Trial Procedures for Teaching Receptive Discrimination to Children with Autism Spectrum Disorders

Research has found that children with autism spectrum disorders (ASD) show significant deficits in receptive language skills (Wiesmer, Lord, & Esler, 2010). One of the primary goals of applied behavior analytic intervention is to improve the communication skills of children with autism by teaching receptive discriminations. Both receptive discriminations and receptive language entail matching spoken words with corresponding objects, symbols (e.g., pictures or words), actions, people, and so on (Green, 2001). In order to develop receptive language skills, children with autism often undergo discrimination training within the context of discrete trial training. This training entails teaching the learner how to respond differentially to different stimuli (Green, 2001). It is through discrimination training that individuals with autism learn and develop language (Lovaas, 2003). The present study compares three procedures for teaching receptive discriminations: (1) simple/conditional (Procedure A), (2) conditional only (Procedure B), and (3) conditional discrimination of two target cards (Procedure C). Six children, ranging in age from 2-years-old to 5-years-old, with an autism diagnosis were taught how to receptively discriminate nine sets of stimuli. Results suggest that the extra training steps included in the simple/conditional and conditional only procedures may not be necessary to teach children with autism how to receptively discriminate. For all participants, Procedure C appeared to be the most efficient and effective procedure for teaching young children with autism receptive discriminations. Response maintenance and generalization probes conducted one-month following the end of training indicate that even though Procedure C resulted in less training sessions overall, no one procedure resulted in better maintenance and generalization than the others. In other words, more training sessions, as evident with the simple/conditional and conditional only procedures, did not facilitate participants’ ability to accurately respond or generalize one-month following training. The present study contributes to the literature on what is the most efficient and effective way to teach receptive discrimination during discrete trial training to children with ASD. These findings are critical as research shows that receptive language skills are predictive of better outcomes and adaptive behaviors in the future.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Health-inclusive higher education : listening to students with disabilities or chronic illnesses

This paper reports on a small-scale project undertaken with tertiary students who identified as having an impairment either at enrolment or by registering with the university's Disability Support Unit (DSU). The aim of the study was to explore with these students ways in which the university was currently meeting their academic support needs and the ways in which these needs might be better met. Consistent with the definition of disability within the Australian Disability Discrimination Act, it became apparent that a significant number of students who identified with that definition, or sought help from disability services, also presented with needs arising from chronic illness. The majority of participants cited an emotional or psychological illness, rather than a physical, intellectual or sensory one, as a possible precursor to difficulties in engagement with the university. We conclude by considering whether commonly used institutional categories are apposite to an understanding of the ways in which students perceive themselves and, importantly, their engagement with the university and success within it.

Use of the My Health Record by people with communication disability in Australia: A review to inform the design and direction of future research

BACKGROUND: People with communication disability often struggle to convey their health information to multiple service providers and are at increased risk of adverse health outcomes related to the poor exchange of health information. OBJECTIVE: The purpose of this article was to (a) review the literature informing future research on the Australian personally controlled electronic health record, 'My Health Record' (MyHR), specifically to include people with communication disability and their family members or service providers, and (b) to propose a range of suitable methodologies that might be applied in research to inform training, policy and practice in relation to supporting people with communication disability and their representatives to engage in using MyHR. METHOD: The authors reviewed the literature and, with a cross-disciplinary perspective, considered ways to apply sociotechnical, health informatics, and inclusive methodologies to research on MyHR use by adults with communication disability. RESEARCH OUTCOMES: This article outlines a range of research methods suitable for investigating the use of MyHR by people who have communication disability associated with a range of acquired or lifelong health conditions, and their family members, and direct support workers. CONCLUSION: In planning the allocation of funds towards the health and well-being of adults with disabilities, both disability and health service providers must consider the supports needed for people with communication disability to use MyHR. There is an urgent need to focus research efforts on MyHR in populations with communication disability, who struggle to communicate their health information across multiple health and disability service providers. The design of studies and priorities for future research should be set in consultation with people with communication disability and their representatives.

Dietary fat restriction increases fat taste sensitivity in people with obesity

OBJECTIVE: Individuals with obesity may be less sensitive to the taste of fat, and it is hypothesized that this is due to excess dietary fat intake. This study assessed the effect of a 6-week low-fat (LF) or portion control (PC) diet matched for weight loss on fat taste thresholds, fat perception, and preference in people with overweight/obesity.

METHODS: Participants (n = 53) completed a randomized dietary intervention and consumed either a LF diet (25% fat) or PC diet (33% fat) for 6 weeks. Fat taste thresholds (lowest detectable fat concentration), fat perception (discrimination ability), preference, and anthropometry were assessed at baseline and week 6.

RESULTS: Consumption of a LF diet (n = 26) and PC diet (n = 27) reduced participants' weight (P < 0.001), with no significant differences between groups (LF, -2.9%, PC, -2.7%). Both diets resulted in a decrease in fat taste thresholds (P = 0.014), and the effect tended to be stronger in the LF diet vs. the PC diet (P = 0.060). The ability to perceive different fat concentrations in foods was increased after the LF diet only (P = 0.017); however, food preference did not change on either diet.

CONCLUSIONS: A PC and LF diet both increase fat taste sensitivity in people with overweight/obesity, with the strongest effect after the LF diet.