Removing the barriers: empowering organisations to translate research evidence into practice

Laurence Taggart
(International) Centre for Intellectual and Developmental Disabilities and the Autism Research Hub, Ulster University

Approximately 3% of the world’s population have ID and/or ASD, this will include Australia. ID/ASD can have a profound impact on a person’s social, cognitive or mental functioning, requiring high levels of costly healthcare and social support. Therefore, it is imperative that such interventions and services received are based upon a sound evidence-base. However, most interventions within this field have not been based upon a sound theoretical framework and a robust evidence-base. Barriers to translating this research knowledge into practice not only include individual but also organisational/systems factors:

Recently, there have been a small number of promising theoretically underpinned health interventions that have been tested via randomised controlled trials to improve the health of this population (Step Up, Weight 5, Walk Well). Despite such positive results, translating this research evidence into clinical practice will continue to remain challenging if we do not understand that it is the organizations/systems that are complex, and not research. We therefore need to be able to undertake research to develop the evidence, that then can be successfully translated into practice thereby overcoming these organizations/systems barriers. In this keynote, we will look at a new innovative way to co-develop and co-design research with service users with ID/ASD, their carers and frontline staff within such organizations/systems using a ‘Logic Model’.

Community living – making the convention on the rights of persons with disabilities a reality

Therese Sands
Director, Disabled People’s Organisations Australia

This presentation discusses community living in the context of the transformative equality framework provided in the Convention on the Rights of Persons with Disabilities (CRPD). It compares this framework with ‘ableism’, and argues that despite ten years since Australia’s ratification of the CRPD, ‘ableism’ is thwarting action towards genuine community living for people with disability.

The presentation highlights how actions driven by the Australian disability reform agenda, through the National Disability Strategy 2010-2020 (NDS) and the National Disability Insurance Scheme (NDIS) do not embed transformative equality. It points to a critical reframing of the NDS and the NDIS guided by the recent General Comment prepared by the UN Committee on the Rights of Persons with Disabilities on article 19, Living independently and being included in the community.

Three starting points are offered to achieve better evidence and outcomes to progress community living for people with disability, with a critical element being recognition of the expertise of people with disability and their representative organisations, or Disabled People’s Organisations (DPOs) in leading and co-producing research, law, policy and practice.

Gaming to support better outcomes, lifelong education, and socialization across the lifespan

Jenn Gallup
International Assistant Professor of Special Education at Idaho State University

Integration on a social, academic, and community level is necessary for supporting better outcomes for individuals with disabilities. Integration refers to an individual’s ability to identify with peers and members of the community. Integrating and establishing social supports are more difficult for individuals with a disability due to, curriculum, peer-to-peer interactions, and changing social landscapes, especially during transition (Carter, et al., 2015). Lack of friendships and support networks contribute to exceedingly high dropout rates in college, low independent living, employment, and community integration for individuals with a disability. Friendships and support networks are the strongest contributing factor postsecondary education for all individuals (Noel-Levitz, 2012). Innovations with Internet-based gaming and communication may offer solutions to increase integration and postsecondary outcomes for individuals with a disability by creating and reinforcing opportunities for positive social, academic, and community interactions. The benefits of Internet-gaming which utilizes complex, diverse, realistic, and social mediums have been documented (Gallup, et al., 2016; Granic, et al., 2014). These skills include communication with others and on a team, digital literacy, time management, and task completion which are hypothesized to be parallel to the skills required in postsecondary education, employment, and may yield better lifelong outcomes. (Gallup, et al., 2017).

Linking discovery and job development

Cary Griffin
(International), Board Chair, Center for Social Capital, USA

This presentation uses multiple examples to illustrate how Discovering Personal Genius identifies job-seeker Vocational Themes that drive individualized, and creative job development. Customized Employment techniques are examined, and an emerging structure resulting in the development of at least 3 Vocational Themes supported by 20 local work environments for each theme “where the career makes sense” combine to form a solid person-centered career plan. This session includes discussion of business ownership as a viable option; leveraging social & economic capital, supply chain mining, and team roles. Staff development recommendations and resources will be highlighted during the discussion period. Further, this session details how non-comparative approaches to job development benefit people with disabilities, and how negotiated jobs demand attention to skills & tasks, economic development, and shared interests between job seeker and employer.

This presentation explores the Discovery process and its direct connection to job development. To be effective, Discovery is conducted in a host of community settings, includes paid work experiences or internships, and generates multiple work avenues with a career trajectory while addressing the unmet needs of businesses. This presentation further details how to circumvent traditional competitive approaches to hiring, building on individual strengths, leveraging the power of community, and facilitating increased use of natural worksite supports.

A Pain Awareness Intervention for Adults with Severe or Profound Intellectual Disability

Anna Devlin, Scope
Stella Koritsas, Scope
Nick Hagiliassis, Scope
Rachael McDonald, Swinburne University
Malcolm Hogg, Melbourne Health

Identifying and managing pain effectively in people with severe or profound intellectual disability (ID) can be challenging. Often there are difficulties with assessment, and staff lack knowledge about pain and its treatment. Consequently, pain is often underreported, undertreated and undiagnosed (Temple et al., 2012). There are no standard procedures for assessment and treatment of pain in individuals with severe or profound ID and few resources exist to educate support workers and carers about how to assess and respond to pain (Findlay, Williams, Baum, & Scior, 2015). The current study describes the development and efficacy of a Pain Awareness Intervention for support staff and family members of adults with severe or profound ID and pain living in shared supported accommodation. A total of 35 support workers and carers participated in an education session and administered one of two behaviour checklists (The DisDAT and the Abbey Pain Scale) over three months. Pre and post-education questionnaires assessed differences in participant knowledge, attitudes and confidence identifying and managing pain. Changes before and after the intervention will be explored and implications for practice discussed.

Disability Health Network: WA Disability Health Framework 2015-2025

Jenny Campbell, Disability Health Network WA Health
Fiona Payne, Disability Health Network WA Health
Monica McGee, Disability Health Network WA Health

The WA Disability Health Framework 2015-2025: Improving the health care of people with disability (the Framework) provides direction for WA Health and its partners on policy development and service delivery to achieve improved health outcomes for people with disability.

The vision of the Framework is an inclusive WA health system that empowers people with disability to enjoy the highest attainable standard of health and wellbeing throughout their life. The framework provides goals and guiding principles for developing policy, implementing services and making decisions regarding the provision of health care. The Framework presents four system wide priority areas for action including understanding and recognition, health and wellbeing, workforce capability and inclusive health care.

Since its launch in 2016, the Framework has been used by health service providers to inform key projects. The Framework has been influential in shaping training and development activities for clinical and non-clinical staff and facilitated conversations with a range of stakeholders working to empower people with disability to be partners in their health care delivery. In 2017 focus has been on development of an Engagement Plan including a “toolkit for change” that will presented along with a evaluation of the outcomes so far. In the future focus will be working with stakeholders to identify champions and opportunities for futher change.

Positive behaviour support – how do we know we are making a difference?

Nick Hagiliassis, Scope
Vicky Bablas, Scope
Mark Di Marco, Scope
Susan Fowler, Scope
Aoife McCann, Scope
Victoria Zainal, Scope

Positive behaviour support (PBS) is an established, evidence-based approach for supporting people with behaviours of concern. A key component is that PBS teams collect and analyse data to determine the effectiveness of their services, for example, through baseline data that is collected to compare outcomes at later dates. Outcomes measurement addresses the question “are we making a difference?” and assists participants to monitor change associated with the services they receive. This paper gives a summary of leading outcome measures from the field, spanning clinical (e.g., behaviour rating scales) and personal outcome domains (e.g., quality of life, participation). We give an example of how we are putting outcomes measurement into practice at the service level through Scope’s PBS team for measuring behavioural change, quality of life, and personal skills. The paper gives practical suggestions for how teams can feasibly incorporate outcomes measurement into their day to day practice for measuring progress to reduce behaviours of concern and improve quality of life.

University of New South Wales Community Reference Panel

Steve Griffin, University of New South Wales

Incorporating the lived experience of affected people and a community perspective into all stages of research offers opportunities to improve research quality and ensures it is relevant to community needs. This involves community input into research objectives, design, and conduct including issues of consent, confidentiality and considerations specific to the study or population. How to achieve this, and with appropriate representation of Aboriginal people, has been a challenge for academic institutions.

To fulfil this role, the UNSW Centre for Social Research in Health (CSRH) established a Community Reference Panel in 2016 to review proposed research and provide ongoing advice on projects from conception to publication and dissemination of findings. The panel was further supported by a UNSW Research Network Lab award. This funding will enable the panel to consider expansion to include other key populations (such as people with lived experience of disability). While the Panel will be engaged for a wide variety of projects, a key role is to support consultation with Aboriginal people.

This presentation will explain how the panel works, how panel members are recruited and consulted and plans for expansion. This presentation will serve as a prompt for broader discussion about community engagement in research.

Better Evidence of Easy English. Better Outcomes What is the research saying?

Cathy Basterfield, Access Easy English

Background:
There is limited published research in the area of Easy English. There is a growing body of research about Easy Read, looking at the whole package of elements (language, images, layout, consumer engagement), which has provided some useful results. At this time, there is limited data on what constitutes the benchmark of quality Easy Read or Easy English documents.

Aim:
This paper will present some current research from Australia in the area of language and linguistic load in Easy English documents and compare this with Easy Read documents.

Method:
5 Easy English and Easy Read documents were analysed and compared. The documents were analysed in the following areas: syntax, length of sentences and sentence structure.

Results:
This research is demonstrating there are clear measurable differences between Easy English and Easy Read documents.

Conclusion:
This data continues to expand our knowledge about Easy English and Easy Read documents. It will assist in developing further comparative studies across countries, and also begin to inform a research based quality framework that may be more easily measurable for Easy English.
It will assist organisations in developing Better Outcomes for the people they support and work with to write quality Easy English documents.

Communicating accessible housing design and policy through virtual reality

Libby Callaway, Occupational Therapy Department, Monash University
Kate Tregloan, Architecture Department, Monash University
Kirrily Hayward, Monash University

The introduction of Australia’s National Disability Insurance Scheme (NDIS) has changed the way supports are funded, including Specialist Disability Accommodation (SDA). This change requires understanding of the new housing policy and its potential application.

Post-occupancy evaluation fieldwork of housing, technology and support design was undertaken with NDIS participants across Australia to examine experiences of housing design. A national housing roundtable was held with government representatives and the National Disability Insurance Agency. Research findings were coupled with NDIS policy and converted into virtual reality within ‘My Home Space’ – a free, interactive online platform. In ‘My Home Space’, virtual housing tours can be filtered by SDA design category and housing type, as well as other criteria, allowing the user to customise information to their needs. ‘My Home Space’ was designed and tested with NDIS participants, families and other stakeholders. A range of accessibility features have been incorporated and tested.

The application of multimedia methods, drawn together through interdisciplinary research, offers improved understanding of NDIS housing policy in real-life practice for people with disability. This innovative approach is one in a suite of information sources developed by our team to ensure housing information is accessible, relevant and can be applied in everyday life.

Telepractice for quality NDIS allied health services: Evidence informing innovation

Monique Hines, University of Sydney
Simone Dudley, Therapy Connect
Kim Bulkeley, University of Sydney
Sue Cameron, Therapy Connect
Michelle Lincoln, University of Sydney

Telepractice is the delivery of assessment and therapy services by linking allied health (AH) professionals to service users via technology such as web-based videoconferencing. Its potential to enhance service access for people with disability living in rural and remote areas has largely gone unrealised, due in part to assumptions about its suitability. We investigated the extent to which quality AH services can be provided via telepractice to children with disability and their families. A case study approach incorporating mixed methods was used to collect detailed information about the telepractice services delivered by an occupational therapist and speech pathologist to four children with disability and their families. Data analysis provided evidence that dispelled common concerns about telepractice. Services reflected contemporary, best practice approaches by demonstrating strong therapeutic relationships and employing collaborative coaching approaches. Neither lack of access to technology, nor skills with using technology, created insurmountable barriers. Our findings provide foundational evidence telepractice as a legitimate service delivery option within the NDIS. These results have been synthesised into practice guidelines and a short video, which aim to promote lifelong learning about telepractice and provide evidence that may help to dispel AH professionals’ and service users’ reluctance to adopt telepractice.

It’s not all science fiction – virtual reality as learning experiences

Stewart Koplick, Endeavour Foundation
Chris Beaumont, Endeavour Foundation

Virtual reality (VR) is a mode of learning that is highly visual and interactive and reflects the bringing together of the disability, education and gaming sectors. VR provides opportunity for people with a disability to enhance learning in a safe environment; can be individualised to the learner and at the same time is fun and responsive.

Endeavour Foundation has codesigned a number of virtual learning experiences with people with a disability relating to public transport, pedestrian safety, using an ATM machine and learning domestic skills in the home. Using VR headsets and Touch controllers, users are able to navigate a virtual landscape supported by individual and group teaching experiences and curriculum documents.

A number of research papers and testing has been carried out with QUT, with Endeavour currently writing a paper to look at the effectiveness of learning from the virtual to the real world.

Hardware and curriculum documents are being deployed across all Endeavour services, with positive feedback received from the end user, families and schools. The intention is to continue developing learning experiences based on the needs and wants of people with a disability, and to collaborate further with the education and gaming sectors to further develop applications.

Using Intensive Interaction to support communication learning and emotional wellbeing with people with complex intellectual disabilities

Mark Barber, Bayside Special Developmental School

Intensive Interaction is an evidence based and inclusive approach to supporting people with the most complex intellectual disabilities to communicate and be social. The interests and activities that learners focus on are harnessed as opportunities for them to experiment with the idea of social agency, while exploring sustained social interaction.

Staff synchronize with the learner’s interpersonal behaviours to become engaging, ‘readable’ & intriguing to them. They then follow their attention and foci, responding in a way that encourages naturalistic, open ended and interactive dialogue-like ‘games’ to emerge, that give the beginning communicator a sense of influence, efficacy and control.

Schools using the approach evaluate learning using video of students involved in ‘taskless’ interaction, which is moderated annually by the Communities of practice Supporting them. Moderation is achieved using the ’Bayside SDS Framework for Recognizing Progress’ and video taken from previous years

Students’ communicative involvement and emotional wellbeing has improved across many measures including movement among the levels of the moderation measuring tool; parent’s anecdotal accounts and records of the students’ Personal Learning Plans.

Continual improvement is supported through programs of peer coaching and inservice professional development available through Statewide and Interstate Communities of Practice in Victoria, Queensland and New Zealand.

Sexual Lives & Respectful Relationships: A peer education sexuality and relationships program by and for people with intellectual disability

Amie O'Shea, Deakin University
Linda Stokoe, Deakin University

Sexual Lives & Respectful Relationships (SL&RR) is a rights based relationships and sexuality program by and for people with intellectual disability. The program is delivered by peer educators in local network sites, supported by program partners from community health, sexuality and disability sectors. In this presentation lead SL&RR Peer Educator Linda Stokoe and national SL&RR co-ordinator Amie O’Shea will talk about the program and why we think it is important in sexuality and relationships education as well as violence prevention. Peer education is rare in the field of intellectual disability, and especially so for topics of relationships and sexuality. But we have learned that having trainers who are ‘in my shoes’ helps participants to make new connections and facilitate democratic learning opportunities. Linda will talk about how SL&RR can make a difference in the lives of people with intellectual disability both as participants and Peer Educators. She will talk about her experiences as a paid Peer Educator and staff member at Deakin University. Amie will talk about gathering the evidence of program outcomes and what we have learned so far. Then Linda and Amie will talk about how they see SL&RR progressing into the future.

Valued activities: part of good life for Aboriginal people with disabilities living on the Ngaanyatjarra, Pitjantjatjara Yankunytjatjara Lands in Central Australia

Heather Jensen, Centre for Remote Health
John Gilroy, University of Sydney
Lee Ryall, Ngaanyatjarra, Pitjantjatjara and Yankunytjatjara Women's Council
Michelle Lincoln, Sydney University
Kerry Taylor, Poche Centre, Northern Territory
Rebecca Barton, Sydney University
Angela Dew, University of New South Wales
Victoria Flood, Sydney University
KimMcCrae, Ngaanyatjarra, Pitjantjatjara and Yankunytjatjara Women's Council

Background
There is limited scholarly research about how Aboriginal people with disabilities in remote communities would like to be supported to live on their country, and which models of service are likely to enable them to live the life they choose.

Method
In-depth interviews and focus groups were conducted with Anangu and Yarnangu people with disabilities and their families, as well as service providers delivering services to people with disability from remote Aboriginal communities.

Results
Thematic analysis of the interview data found several major themes which contribute to a good life for Anangu and Yarnangu with disabilities. These include being on country, families and valued activities. Valued activities included visiting families, art, cultural business, sports and music. These themes will be explored in greater detail in this paper, along with ways that these can be supported by service providers

Significance
This research will enable Aboriginal people’s priorities to be at the forefront, when developing models of service provision for remote communities. While this research is specific to people from the NPY Lands it is hoped that learnings from this research will be relevant to other remote communities.

Ticket to Work

Michelle Wakeford, National Disability Services
Kerrie Langford, National Disability Services

Young people with disability are able to thrive in employment when prepared and supported while at school. Despite this, many are not successfully transitioning from school into further training/employment and face limiting stereotypes and a pervasive culture of low-expectations around employment.

Ticket to Work prepares secondary students for the world of work and provides them with an employment pathway through a combination of vocational/career development and early contact with work environments. The initiative leverages the power of cross-sectoral partnerships through a network including schools, employment services, NDIS providers and employers.

We have evaluated, and are continuing to evaluate:
• Post-school outcomes comparing social/economic participation to a comparison group using existing datasets
• Current and desired levels of cooperation between the network members
• Longitudinal data
We found:
• Ticket to Work participants have more positive economic/social outcomes post-school
• Collaboration between network members created better outcomes
• 1038 jobs and 2689 career development activities were created
We want to change policy and practice in Australia so students, no matter what their disability, get opportunities to build their employability. We want to demonstrate and increase the knowledge-base about what types of interventions work best for young people with disability in their transition from school, and show the effects of a collective-impact approach.