Finding the Right Support – The Vision & the Execution

Maree Ireland
Scope Australia

The topic of finding the right support for a person with a disability is best considered at two levels: At a theoretical level we need to be clear on the role of support services for the person with a disability and what the aim of those services is Then having identified what we want in our support services we need to focus on turning that theory into a reality under NDIS.

I am a strong believer that successful and sustainable support services for a person with a disability can only be achieved if we are clear from the outset, at a theoretical level, what we ideally want from those personal support services.

Once we are clear on our personal requirements, activities and life goals that we want to achieve using our support services we need to then find the support services which will make that vision a reality.

The hardest journey of all is finding a good support agency and great support workers.

In this regard, you need to be clear with the agency as to what your vision is for your support and what you want to achieve with it. Their role is to then help you find the support workers to deliver on that vision. In achieving sustainable and effective support services for people with disabilities regard must be given to the two levels: the theoretical (your vision) and the reality (your plan for achieving great support and funding for that support). This paper will outline practical examples and strategies for achieving both.

Dignity, Autonomy, Choice, and Self-Determination: Toward Full Citizenship and Participation

Michael L. Wehmeyer
University of Kansas

This session will take as it’s frame the General Principles of the Convention on the Rights of Persons with Disabilities of “respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and the independence of persons.” The importance of strengths-based understandings of disability to achieve this vision will be emphasized, and the central role of self-determination and choice in enabling people to fully participate in society will be discussed. The role and conceptualization of autonomy will be examined. Finally, the session will identify strategies, policies, and practices to promote self-determination, autonomy, and choice as a means to fulfill the vision established in the General Principles of the CRPD.

Resources addressing abuse neglect and safety, which one do I need for my situation?

Elizabeth Weston
Scope Australia

Hilary Johnson
Scope Australia

Naomi Rezzani
Scope Australia

Research conducted over the past 15 years clearly demonstrates that people with disabilities and complex communication needs are 2-6 times more likely to suffer physical, mental or sexual abuse than others in their community, as a consequence of their inability to communicate effectively (Balandin 2006, Collier 2006). There is an urgent need to develop and strengthen safeguards for people with complex communication needs of all ages. To address these needs a state government body commissioned a suite of resources from various advocacy and disability focused organisations to address safeguard issues for adults with cognitive and or communication disabilities. Our project, Speak up and be Safe from Abuse, is now in its 5th year of funding. A range of communication resources have been designed to support adults with communication support needs to discuss or report abuse and neglect based on a literature review conducted in 2014. These resources have included online vocabulary specific communication aids, face to face and online training to support workers, advocates and counsellors to use communication aids and support strategies when discussing abuse and neglect. The process for developing the resources have included extensive and continued networking within and across the sector. Relationships have been established with disability services, advocacy groups, specialists working in family violence and the justice system, people with communication support needs, and speech – language pathologists working within disability sector with a wide range of people. During the project several issues have arisen including the applicability of the resources to children that led to conducting literature review and consultation with key stakeholders around the specific needs in this area for children.
Our presentation will summarise the findings that are most relevant to the most recent project. The current project has addressed four issues, a) the limited information about which audience each resources is most appropriate ;b) the use of the resources for people with different support requirements; c) the absence of guidelines as to which communication resources would be useful at different points throughout continuum from pro-active strategies that can be used to promote advocacy and raise awareness, to reactive strategies that can be used to assist people who have experienced abuse and neglect ; d) the need for staff to develop skills to support the use of topic specific communication aids.
To respond to the above learnings, the most recent installment of the Speak up and be Safe from Abuse project has developed a resource that maps out which available resource could be used for individuals with different communication support needs, within different contexts of support for communication support needs. This part of the project is due to be completed by July 2020. This presentation will outline the considerations that lead to the development of this resource, and our ideas and experiences in terms of how the resource could be applied within disability support and advocacy contexts.
Learning Outcomes:
-Participants will understand how to use the different communication resources at different points of the continuum from pro-active to re-active strategies when discussing abuse and neglect.
-Participants will be aware of the principles and process underpinning creating a guide about what resource is useful at what point for people with communication support needs.
-Participants will be aware of how they can keep in touch with the project so that they can find the resources online, once they have been finalised.

Collier, B., .McGhie-Richmond D; & Odette, F. (2006) Reducing the risk of sexual abuse for people who use augmentative and alternative communication. Augmentative and Alternative Communication, 21.62-75.

Participation in end of life care for people with profound intellectual and multiple disabilities

Joanne Watson
Deakin University

This presentation will focus on decision-making support for people with profound intellectual and multiple disability (PIMD) at the end-of-life. Due to improved health care, people with PIMD are living longer lives than ever before. Therefore, they are increasingly facing decisions relating to end-of-life care and planning. Despite the increased attention that has been given to end-of-life planning, opportunities to have preferences responded to at the end-of-life are more likely afforded to people considered to have cognitive and decision-making capacity. Those supporting people with PIMD to plan for and make decisions about end-of-life care face several challenges. These challenges are rooted in difficulties with communication exchange between people with PIMD and their communication partners, leading to a widely held perception of decision-making incompetence for people with PIMD. A secondary challenge is society's widely held prejudices regarding people with PIMD’s right to 'legal personhood' and therefore to be supported to lead self-directed lives, including at the end of life. In response to these challenges, this presentation will draw on empirical research to discuss decision-making support within the context of palliative care and advance care planning, specifically for people with PIMD.

Employment CoLab’ – A co-design approach to develop, pilot and evaluate a new pathway to mainstream employment for people with Acquired Brain Injury

Em Bould
Monash University

Libby Callaway
Monash University

Libby Witts
Monash University

Scott Thomas
Monash University

Sarah Johnstone
Transport Accident Commission

Aims: The National Disability Insurance Scheme is designed to influence economic participation outcomes. However, people with Acquired Brain Injury (ABI) traditionally experience low employment rates, compared to other Australians. To positively impact economic participation following ABI, a co-design approach was used to investigate employment pathways.
Method: People with lived experience of ABI and a project manager were employed in research roles to: 1) Review existing pathways, understanding enablers and barriers, to employment following ABI; and 2) Use ABI lived experience, allied health and social insurer expertise to develop, pilot and evaluate a new pathway to mainstream employment, ‘Employment CoLab’.
Results: Enablers and barriers to employment of people with ABI were documented. Co-design helped to identify practical strategies to facilitate workplace diversity and inclusion. This guided the development of the new employment pathway, tailored for people with ABI. Qualitative evaluation indicated ‘Employment CoLab’ offered a coordinated, effective team approach to gain and sustain open employment and wages. Funding sources for, and barriers and enablers to, mainstream employment have been considered in a strategy to scale this pathway for future access by others.
Conclusions: The new pathway has opened up opportunities to build inclusive and sustainable economic participation by people with ABI.

Art making as a tool for choice and decision making; integrating arts based assessments into the NDIS process

Emily Walters
Able Australia

Art is a method of communication which can support or substitute for oral and written communication. It is often said that a picture paints a thousand words. Within the context of art therapy, art making can be used as a tool for choice and decision making.
Arts based assessment may incorporate assessing developmental levels and visual information processing. The capacity for expression and metaphor within art can reveal that which is difficult to conceptualise and articulate.
The author has utilised arts based assessments as a tool to involve individuals who are non-verbal or who prefer visual communication styles in the process of making choices and decisions. This presentation will explore a number of cases where participants have been supported to explore emotional experiences and practical tasks in the NDIS planning and review process. Within this context arts based assessments are not prescriptive, they are person centred; they embody and promote the values of choice and control.
In supporting choice and decision making it is important to involve the participant in a way that is meaningful and accessible to them. Registered art therapists can assist in the appropriate use of arts based assessments to support this.

Increasing inclusion through assistive technology

Lauren Henley
Council on the Ageing, Victoria

Assistive technology plays a critical role in the lives of many people with disability. screen reading software, mobility aids, electronic communication devices and prosthetic aids are all examples of assistive technology.

The NDIS Assistive Technology Strategy states:

“AT (assistive technology) enables people with disability to live a better, more independent and more inclusive life. It enables people with disability to maximise their abilities at home, in the community and in the workplace, ensuring greater economic and social participation.”

Yet, there remains large unmet needs for assistive technology.

Assistive Technology for All is a national alliance of peak bodies and consumer representatives spanning the Ageing and Disability Sectors. Together, we are advocating for equitable access to life-changing assistive technology for people with disability who fall outside the NDIS. Hear more about the issues for non-NDIS participants and how we are seeking to resolve them in this informative presentation.

Equal access to written information: how Easy English helps people with Intellectual Disability and Culturally and Linguistically Diverse backgrounds to read

Ruby Yee
Scope Australia

Caroline Livanos
Scope Australia

This research explored the ways Easy English could help different populations, including people with ID and people from a CALD background, to read and understand information.Participants included adults with intellectual disabilities and adults from culturally and linguistically diverse backgrounds (n=10). Ethics permission was provided by the Human Rights Ethics Committee (HREC). Participant comprehension and literacy levels were ascertained. Each participant reviewed a 12 page Easy English document and the sessions were audio and video recorded. Talking MatsTM were used to determine how participants felt about different Easy English features.All participants agreed most Easy English features were helpful, but responses varied depending on each individual’s literacy level and backgrounds. Preliminary results suggest that Easy English may be useful for people from a CALD background. Further research is required to understand how Easy English might be tailored to people with different reading support needs.

Creating a culture of inclusion – work with us, not for us.

Donna Purcell
Commonwealth Bank Australia

Australian society is experiencing social and cultural changes when it comes to the inclusion of people with disability. The megatrends that will shape the future of providing services for people with disability are the technological revolution, new skills required for future employment, the cultural changes that are taking place and the demographic shifts occuring in Australia since the introduction of the NDIS.
The technological revolution, or the Fourth Industrial Revolution as it is called, has brought digitalisation, artificial intelligence, automation and robotics. All have the potential to improve the quality of life for people with disability but not without significant challenges and changes in mindset.
The future of providing services that people with disability want is not only affected by the impact of these new technologies but also by cultural change and demographic shifts. Concepts such as work-life balance, social values, responsible and ethical labour relations, career development and employment transition need to be incorporated into service provision models not just for customers but for service providers too. The future of services for people with disabilities should include broader skill developments such as critical thinking, analytical capacity, emotional intelligence and cognitive flexibility.
Considering the high level of unemployment of people with disability in Australia and the negative economic impact of poor workforce participation and mental health in the workplace, as well as the benefits in addressing it, there is a strong business case in tackling issues relating to the greater inclusion of people with disability in both setting policy and program direction for how services and support are provided.

Complex needs or complex circumstances? The life situations of Parents with ID

Marjorie Aunos

Laura Pacheco
MSW, Ph.D.

Margaret Spencer

International research reveals an over-representation of parents with intellectual disabilities (ID) in the child welfare system. Over five decades of research demonstrates that external and environmental issues, such as poverty, untreated mental health issues, domestic violence and lack of adapted and adequate support, have a far more reaching effect then the intellectual disability per se on parenting capacity. Intervention studies have clearly demonstrated that parents with ID can parent effectively or acquire the necessary skills when provided with the right supports. In seeking such support, parents with ID have good reason to be cautious. The threshold for entry into the child welfare system for parents with ID tends to be based on pervasive and entrenched pejorative assumptions and sometimes unsubstantiated concerns. Moreover, when they enter the system what is offered to them as a family is commonly not evidence based and woefully inadequate. Rather than the system taking responsibility for failing these families, it tends to project its failure onto the parents and more specifically their ID, blaming them for not engaging, lacking insight, being uncooperative and resistant and/or incapable of learning and changing. So then, should we be talking about complex needs of these families or should we focus more on the complexities of their life circumstances, their family relationships and relationships with formal services? This keynote will emphasize the ways in which parents, service providers and natural supports can work together in order to maximize self-determination of parents with ID to promote family quality of life.

Measuring child outcomes in disability services: Development and trial of the child version of the Outcomes and Impact Scale

Caroline Hart
Scope Australia

Stella Koritsas
Scope Australia

Nick Hagiliassis
Scope Australia

The move toward individualized funding, in Australia and internationally, has led to a growing interest and need to measure the effectiveness of services provided to people with disability. Some researchers have responded by developing and adapting measures to determine the impact of disability services on the people who use them. There is also a need to explore people’s perspectives about how services impact everyday life. This paper reports on the qualitative component of a broader research project that aims to adapt and test a tool that measures service outcomes for children and young people with disability (0-12 years). The paper will discuss findings from focus groups with carers (n=21) of children/ young people with disability, and interviews with therapists and disability support workers (n=10), about how disability services impact the lives of children/ young people. This research is significant because it explores how disability service providers might meaningfully consider and improve on outcomes for children/ young people and their families. The research will inform service development and enhancement, relating to the conference theme of providing services that people want.

Adults with severe to profound multiple disability and inclusion in creative arts therapies – the bigger picture

Victoria Churchill
University of Melbourne

Adults with severe to profound and multiple disability can benefit greatly from creative arts therapies (art, dance, drama, and music therapies). However, it can be very challenging for therapists working with groups to make sure these individuals are fully included. This study is a critical interpretive synthesis using the International Classification of Functioning – it examines what people have written about their work to find ‘facilitators’ and ‘barriers’ in their environment, and explores what these mean for adults with severe to profound and multiple disability and the people supporting them. Although the literature was only from creative arts therapies, it showed a range of ‘Physical’, ‘Social’, and especially ‘Attitudinal’ ‘barriers’, not just in therapy, but also throughout daily life, including ‘Services, Systems, and Policies’. It also showed ‘barriers’ influencing therapists and other support people, which affected the way they worked. These findings strongly suggest wider systemic issues. This paper will help people understand and recognise these ‘barriers’, so that we can change the way adults with severe to profound and multiple disability are perceived and supported, not only for better inclusion in creative arts therapies, but also to advocate for the respect and rights they deserve.

Sexuality rights for people with brain injury

Monica Wellington
Deakin University

Under the UNCRPD, everyone has the right to live sexual lives. However, this right is challenged for people with brain injury when it is not seen as a priority in healthcare and rehabilitation.

Using a social/ecological framework for understanding sexuality in the lives of people with brain injury, this project adapted the existing Sexual Lives & Respectful Relationships (SL&RR) program through the use of narrative research to co-produce stories with people with acquired brain injury. The stories were then used in the SL&RR program, to train a group of people with brain injury and professional staff. This presentation will highlight the key project findings and recommendations for future work. We will present outcomes of peer education as a strong response to sexuality and relationships in the lives of people with brain injury. Committed to ‘nothing about us without us’, the presentation will be delivered by SL&RR Peer Educators alongside a researcher. Together we will highlight the importance of partnerships between community professionals and people with brain injury in pursuit of sexuality and relationship rights.

Working with complex and high needs clients – The importance of building trusting relationships for increasing quality of life and reducing behaviours of concern

Susan Fowler
Scope Australia

When a person displays behaviours of concern, they may have a nervous system that is overwhelmed and have gone into fight/flight mode. Our own reactions when someone is distressed can influence the person’s distress further. We may not be aware of it, but the unspoken signals we send out can influence feelings of safety or fear in others. Taking the time to consider such things as our posture, facial expression and breathing patterns can impact significantly on another person’s arousal levels and help them feel calmer. Being mindful of our signals can also help build accepting relationships, a person’s sense that they can rely on others, and that they are safe, even when they are feeling frustrated or overwhelmed. When this is absent, the person moves to the next step in the hierarchy of keeping themselves safe – fight/flight, also manifested as a behaviour of concern. This presentation will look at how understanding the nervous system can help carers when supporting people with behaviours of concern.

Developing Social Skills with Adults Enaksha Garde, Enaksha Garde Speech Pathology

Emily Churchill
Enaksha Garde Speech Pathology

Social skills programs offer one way for people to improve their skills and independence over time. There is evidence to suggest that when delivered effectively they can assist people to increase community and workplace participation, enhance social relationships, and support positive mental health. There is a need for programs targeting people with intellectual disability and/or Autism to pursue their social goals and aspirations that can be delivered in the NDIS operating environment and for which there is evidence.
Nine people with an intellectual disability participated in a 13 week pilot social skill program in which social skills (e.g., personal distance, listening positions, interrupting, asking questions, commenting) were taught explicitly. The program was delivered by a speech pathologist, in partnership with a day service, an objective being to upskill direct support staff to deliver the program in future. Families were supported to promote translation of skills to the person’s natural environments. Outcomes were measured using surveys and a clinical tool.
Surveys completed by families and staff indicate a positive impact of the pilot program in all areas surveyed, as well as positive change between pre- and post-administration of the Pragmatic Protocol. Practitioner reflections reveal enablers and barriers to the successful delivery of the pilot program.
The evidence gathered from pre post interviews with parents and staff highlights that the pilot program can assist people develop skills for achieving social goals and aspirations. It provides insights into working alongside a person’s formal and natural supports to build capacity, delivering group interventions under NDIS, and building simple but effective program evaluation into everyday practice.

Girl’s Club – building connections over hair and makeup!

Emily McDonald
Senses Australia

The Senses Australia Girl’s Club was formed to foster friendships among young women with Deafblindness, while learning skills of hair and makeup. The purpose of the group was to bring together a group of young women with Deafblindness, and develop social skills over a shared activity. Participants in the group experience significant isolation in their everyday lives, some finding true friendship for the first time as young adults. These young women all have additional developmental disabilities, including CHARGE syndrome and epilepsy, requiring specialised support to meet the complexity of their learning needs. The intention of the Girl’s Club was to further support building of connections among the group of friends, while participating in an age appropriate activity, therefore reducing the experience of isolation felt by these young women.
The group is run by an occupational therapist, with the support of a communication guide. Five young women, who experience Deafblindness, participated in the group. Some of the participants were supported by support workers and Auslan interpreters.
The focus of each session was determined by the participants, ranging from learning to braid hair, do eye makeup, and yoga. The group was run at the Senses Australia office. The original concept of the group was created by the participants of the group, and it is hoped that the group will continue without therapy supports in the longer term.
Anecdotal feedback from the group to date has been positive, with participants and their family members noting increased participation in grooming tasks at home, and reduced isolation through strengthening friendship ties with fellow group members. The co-design structure of the group has been a positive factor in increasing the sense of ownership the participants feel over the group, and it is hoped that this has empowered the participants to develop and participate in similar groups in the future.