Ageing, Disability & Home Care

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The National Disability Research and Development Agenda

The National Disability Research and Development Agenda

In 2012 the former National Disability Policy and Research Working Group (DPRWG) funded 10 disability research projects that were informed by the National Disability Research and Development Agenda.

The disability research projects were overseen by the Department of Family and Community Services, as secretariat for the national DPRWG.

1. Audit of disability research in Australia

In 2012, the DPRWG engaged the Centre for Disability Research and Policy, University of Sydney to prepare a report on the audit of disability research in Australia. The research team also included members from People with Disabilities Australia, the National Disability Strategy and the University of Melbourne.

The focus of the audit of disability research was to provide a comprehensive picture of the current state of disability research in Australia. This included exploring and determining the gaps in disability research evidence to target areas that have not been efficiently resourced previously or where there has been little research to date.

The report is presented in two parts:

2. A new mentorship model: Towards arts employment and social inclusion for people with disability

This report captures the evaluation approach and results from a year-long multi-partnered project and exhibition, called HERE&NOW13, aimed at developing artistic skills and enhancing the social inclusion of artists with disability in efforts to elevate contemporary disability arts practice in Western Australia.

The key aim of this evaluation was to investigate the processes and impacts of HERE&NOW13, and to generate a model that explains how the participants (including curators, mentees, mentors and partner organisations) experience the program.

Key findings revealed that there were particularly beneficial characteristics of project design: using an organisational–individual mentoring model; showcasing works at a high-profile contemporary gallery; and using a robust partnership model that opened up networks to artists and their mentors.

The most noted benefits for the mentees were: enjoyment, working with new and high-quality materials, pride, increased motivation and inspiration, increased confidence and sense of purpose, working more independently, becoming more aware of their potential as professional artists, accessing new networks and relationships, and having a higher profile as artists.

3. Development of Questionnaire for Longitudinal Study on the Social and Economic Participation of People with Disability

This project used a developmental process to design a questionnaire for the first wave of a longitudinal survey. This report outlined the four stage questionnaire development process.

Recommendations included investing resources to establish a study based on questions that are informed by a social model of disability that includes the following modules: demographics; disability; education, employment, and income; domestic life; health; transport; access to services; accessibility; caring for others; discrimination and crime; community, leisure activities, and social contact; and choice and control. The questions need to be provided in multiple modalities (e.g. web, plain language, large font) so that people with a range of impairments are able to participate.  People with disabilities need to be included in all stages of the study development, implementation and interpretation of findings.

It was suggested that resources required to undertake further development of this questionnaire for the first wave of a longitudinal study needed to include focusing the questionnaire content, cognitive testing of the questionnaire, development and testing of sampling methods and field testing of proposed approach.

4. Implementing person-centred approaches to private housing for people with disability: Impediments and difficulties

This report reviews a selected person-centred approach to private housing securement for people with disability. This approach required mapping the context and identifying the structural elements impeding attempts to implement a person-centred approach and access to housing in the private market for people with disability. The study also explored the implications for access to and the design and provision of private housing for people with disability and then established the basis for ongoing housing and disability research.

Recommendations for the development of person-centred models studied were refined to inform person-centred planning, individualised support and self-directed funding approach. Recommendations were also provided for three areas including government, housing industry, people with disability, families, support networks and advocates, community organisations and researchers.

5. Space, place and relationships: Understanding connectedness and belonging for young people with cognitive disability in regional communities

This research addressed gap in our knowledge by working collaboratively with young people. Young people were asked what helped them to feel like they belonged and were connected to their communities, and what aspects of belonging were difficult to achieve. The research investigators assisted them to describe their connections, and how to explore the facilitators and barriers to belonging and connection, including the impact of living in a regional community. The views and experiences of young people about their participating in research were also gathered through the research process.

This study confirmed and extended existing research about belonging and connection of young people with cognitive disability in regional communities, providing rich and important insights and practical ideas for change.

Partnering with young people with sometimes significant support needs in collaborative research processes involved the collection and analysis of their own research data, and witnessing the exhibition of their work as artists resulted in rich, rigorous research.

This report is available in Easy Read (PDF).

6. Individual funding: Building community capacity through action research

This research included people with disability who met across Australia in small groups to talk about their disability support. The project had two goals: peer support, with people in the groups learning from each other; and action research, with people doing research activities and sharing their findings about disability support with other people.

Findings from the report suggested that most community action research disability groups (CARDs) members used formal disability services, and some did not. There were many different support arrangements, offering varied levels of self-direction. Many people with support from service providers felt limited in their choices, and people with self-directed options were generally more positive.

Many CARD members felt they did not have enough information about options for self-directed support and about managing self-directed support. Many CARD members had poor transport and inflexible support services, and this reduced their ability to live as they wished and do what they wanted. Relationships between CARD members and their support workers were the most intensely discussed topics in the groups.

7. Improving staff capacity to form and facilitate relationships for people with severe intellectual disability: Translating a theoretical model into evidence based intervention

The study aim was to evaluate whether an intervention based on the relationship model would lead to changes in the frequency of social interactions and the nature of the relationship between direct support staff and people with severe intellectual disability.

There were positive changes to the frequency of social interaction and the nature of the relationship between direct support staff and people with severe intellectual disability. Overall relationship processes, staff contact and service user engagement were infrequent and variable. There were however, positive changes for individuals: a high effect for one service user, and a minimal effect for four others for relationship processes; minimal effects for staff contact and assistance for six service users and for engagement for four. The results from the survey tool showed little change, but changes to staff practices and attitudes following the use of the intervention tool were evident in the qualitative data.

8. "It's different in the country" - Supporting ageing-in-place for people with developmental disability: An exploration of rural and metropolitan perspectives

Phase one of the study utilised a semi-structured conversational style interview format with consenting older individuals with lifelong intellectual disability living in the community (either in their family home or in small group homes) and those who have moved to residential care facilities. Carers, both paid and unpaid, of these individuals were also interviewed. Participants from both rural and urban areas of NSW (Wollongong and Parkes) and Queensland (Redbank and Toowoomba) were included. In total 68 interviews were completed.

Phase two used a purpose-developed tool, a quantitative survey to interview health care professionals. There was a strong preference by participants (both metropolitan and rural) in having autonomy in choosing to age where they want to and with whom they want to. There was a need for greater and more meaningful consultation in any decision-making processes.

9. Optimising outcomes in supported living for people with intellectual disability

Group homes have been the dominant disability service model. The NDIS holds the promise of greater choice for people with intellectual disability about where and how to live through ‘supported living’ which separates housing and support. There is little research about the housing, communities or support that leads to a good quality of life in supported living. Debate has focused particularly on shortages of affordable housing. This study explored factors associated with quality of life outcomes for people in supported living arrangements. Unequivocally people with intellectual disability felt greater independence and control compared to living with their parents or in a group home. This was a considerably cheaper option. Objectively most participants however had a mediocre quality of life, few close friendships and felt lonely.

10. Facilitating social participation of children and young people with disabilities in rural and regional Australia using mobile and computer based technologies

This report is being developed and is expected to be available by August 2015.

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