Rove n Rave™ development : a partnership between the university and the disability service provider to build a social website for people with an intellectual disability

Rove n Rave ™ is a website designed and created for, and with, people with an intellectual disability. Its aim is to provide them with a user-friendly online platform where they can share opinions and experiences, and where they can find reviews which will help them to choose a place to visit themselves. During the development process, input on design requirements was gathered from a group of people with an intellectual disability and the disability service provider. This group then tested the product and provided further feedback on improving the website. It was found that the choice of wording, icons, pictures, colours and some functions significantly affected the users' ability to understand the content of the website. This demonstrated that a partnership between the developer and the user is essential when designing and delivering products or services for people with an intellectual disability.

The development of an instrument for assessing cognitive ability and screening for the cognitive decline associated with dementia in people with moderate to profound intellectual disability

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.

Parenting and the behavior problems of young children with an intellectual disability: Concurrent and longitudinal relationships in a population-based study

We examined parenting behaviors, and their association with concurrent and later child behavior problems. Children with an intellectual disability (ID) were identified from a UK birth cohort (N  =  516 at age 5). Compared to parents of children without an ID, parents of children with an ID used discipline less frequently, but reported a more negative relationship with their child. Among children with an ID, discipline, and home atmosphere had no long-term association with behavior problems, whereas relationship quality did: closer relationships were associated with fewer concurrent and later child behavior problems. Increased parent-child conflict was associated with greater concurrent and later behavior problems. Parenting programs in ID could target parent-child relationship quality as a potential mediator of behavioral improvements in children.

Loneliness in individuals with intellectual disability

Although some substantial issues exist regarding measurement of loneliness in individuals with intellectual disability, research has generally concluded that members of this group are more likely to (1) appear to others to be lonelier than their typically developing peers and (2) self-report greater loneliness than typically-developing individuals. As examples, in a study by Solish, Perry, and Minnes (2010), parents of children with intellectual disability reported fewer friendships and social activities for their children than parents of typically-developing children. Oates, Bebbington, Bourke, Girdler, and Leonard (2011) found that approximately one-third of the parents in their population study of children with Down syndrome reported that their child had no friends. When questioned directly about the experience of loneliness, only boys with mild intellectual disability reported more loneliness than their same age, typically-developing peers (Williams & Asher, 1992).

Examination of a scale assessing attitudes towards individuals with intellectual disability in China

This study examined the applicability of the four-factor structure of the short form of the Community Living Attitudes Scale-Intellectual disability1 (CLAS-ID) in China, using a sample of 325 Chinese community members. Confirmatory factor analysis revealed that the original structure of the short form of the CLAS-ID did not adequately fit the data from the current sample. Most items of the Exclusion and Similarity subscales were retained while items on the Empowerment and Sheltering subscales were removed. Chinese community members held generally positive attitudes towards people with intellectual disability. However, a measurement tool originating from the Chinese context is needed to provide a better understanding of attitudes towards individuals with intellectual disability in mainland China.

Disability, deinstitutionalisation and discourse : an analysis of institutional reform policies in Queensland, 1994-1996

The closure of large institutions for people with intellectual disability and the subsequent shift to community living has been a feature of social policies in most western democracies for more than two decades. While the move from congregated settings to homes in the community has been heralded as a positive and desirable strategy, deinstitutionalisation has continued to be a controversial policy and practice. This research critically analyses the implementation of a deinstitutionalisation policy called Institutional Reform in the state of Queensland from May 1994 until it was dismantled under a new government in the middle of 1996. A trajectory study of the policy from early conceptualisation through its development, implementation and final extinction was undertaken. Several methods were utilised in the research including the textual analyis of policy documents, discussion papers and newspaper articles, interviews with stakeholders and participant observation. The research draws on theories of discourse and focuses on how discourses of disability shape policy and practice. The thesis outlines a number of implications for policy implementation more generally as well as for disability services. In particular, the theoretical framework builds on Fulcher's (1989) disabling discourses - medical, charity, lay and rights - and identifies two additional discourses of economics and inclusion. The thesis argues that competing disability discourses operated in powerful ways to shape the implementation of the policy and illustrates how older discourses based on fear and prejudice were promoted to positions of dominance and power.

Impact of disability on families : Grandparents’ perspectives

Background Caring for a child with a disability can be a unique and challenging experience, with families often relying on informal networks for support. Often, grandparents are key support resources, yet little is known about their roles and experiences. Reporting on data collected in a larger Australian study, this article explores grandparents' experiences of caring for a child with a disability and the impact on their family relationships and quality of life. Method A qualitative purposive sampling design was utilised; semi-structured interviews were conducted with 22 grandparents (17 women, 5 men) of children with a disability. Grandparents ranged in age from 55 to 75 years old and lived within a 90-min drive of Brisbane, Australia. Interviews were transcribed and responses analysed using a thematic approach, identifying categories, themes and patterns. Findings Four key themes characterised grandparents' views about their role in the family: holding own emotions (decision to be positive), self-sacrifice (decision to put family needs first), maintaining family relationships (being the ‘go-between’) and quality of life for family in the future (concerns about the future). Conclusions Grandparents are central to family functioning and quality of life, but this contribution comes with a significant cost to their own personal well-being. Implications for policy, practice and research are discussed, particularly grandparents' fear that their family could not cope without their support.

Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

Stomp : an interactive platform for people with intellectual disabilities

For people with intellectual disabilities there are significant barriers to inclusion in socially cooperative endeavours. This paper investigates the effectiveness of Stomp, a tangible user interface (TUI) designed to provide new participatory experiences for people with intellectual disability. Results from an observational study reveal the extent to which the Stomp system supports social and physical interaction. The tangible, spatial and embodied qualities of Stomp result in an experience that does not rely on the acquisition of specific competencies before interaction and engagement can occur.

Laughing & disability : comedy, collaborative authorship and Down Under Mystery Tour

This thesis is an exploration of representation, authorship and creative collaboration in disability comedy, the centre piece of which is a feature-length film starring, co-created and co-written by three intellectually-disabled people. The film, entitled Down Under Mystery Tour, aims to entertain, and be accessible to, a mainstream audience, one that would not normally care about disability or listen to disabled voices. In the past, the failure of these voices to reach audiences has been blamed on poor training, marginal timeslots and indifferent audiences. But this project seeks an alternative approach, building collaboration between disabled and non-disabled people to express voice, conceive, construct and produce a filmed narrative, and engage willing audiences who want to listen.

Active ageing among older adults with lifelong intellectual disabilities : the role of familial and nonfamilial social networks

Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating "active ageing." Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating “active ageing.” All key social network members conceived active ageing to mean ongoing activity. Family and extended family members were found to play a crucial role in facilitating independent living and providing opportunities for recreational pursuits for those living in group homes. Members of religious organizations and group home staff provided the same types of opportunities where family support was absent. The findings suggest the need for improvements in resource provision, staff training, and group home policy and building design.

Digital technologies and musical participation for people with intellectual disabilities

Research on the aspirations of people with intellectual disabilities documents the importance of alternative zones of inclusion where they can assert their own definitions of ability and normality. This stands in contrast to assumptions concerning technology and disability that position technology as ‘normalising’ the disabled body. This paper reports on the role of a digital music jamming tool in providing access to creative practice by people with intellectual disabilities. The tool contributed to the development of a spatio-temporal zone to enable aesthetic agency within and beyond the contexts of deinstitutionalised care. The research identifies the interactions among tools, individuals and groups that facilitated participants’ agency in shaping the form of musical practice. Further, we document the properties of emergent interaction - supported by a tool oriented to enabling music improvisation - as potentially resisting assumptions regarding normalisation.