This book is about turning visionary policies about the rights of people with disabilities into reality in their everyday lives. It is a guide to knowledge for designing quality services and to the practices needed to deliver enabling support to people with disabilities. The core argument of the book is that the quality of disability services and support rests on good practice—the moments of interaction between people with disabilities and services when knowledge is applied and principles become actions. Thus, we understand practice as conscious self-aware actions by support workers, managers or professionals where they apply knowledge, theories, principles and skills in real-life situations. Yet too often practice goes unnoticed and unmonitored, as paperwork—policies and procedures—dominates the attention of managers and expected practice remains abstract and ill defined.

Policies and procedures are necessary to scaffold the delivery of services but are not sufficient for delivering quality support and safeguarding the rights of people with disability. Delivering services and support to people with disabilities cannot be proceduralised in the same way that it can be for making widgets. Standardised procedures ensure widgets are uniform, a consistent size and density—an indicator of quality. In contrast, delivering services and support requires ‘standardised individualisation’—that is, systematic ways of working, as a team, in a programme, as a support worker, to understand and respond to each person’s individual needs, preferences and potential risks to safety. This means the minutia of support looks different for every person reflecting their individuality—an indicator of quality. For example, in the context of accommodation services, standardised individualisation might mean; policies requiring a one-page profile capturing essential information about how a person communicates and the support they need to be engaged; procedures requiring every worker on every shift to be aware of this information; and training policies ensuring every worker has the skills to use that information in their practice—the way they interact with the person.

Good practice relies on the continuous judgements of workers and managers as they bring together and apply, in a unique combination, the values, skills, and knowledge necessary to meet the needs and preferences of each individual they support, at a specific time, in a specific context. This book is written for those charged with this task, from CEOs who create the conditions for good practice to direct support workers who carry it out. It will also be useful to professionals involved in advising disability services or delivering specialised support to people with disabilities, and to further and higher education students studying disability. This book is written to be accessible to non-academic readers.

Background

In Australia, the introduction of the National Disability Insurance Scheme generated unprecedented growth of disability support services and interest in the support necessary for people with disability to be fully included in society. Funding for services has doubled since 2013 as the Scheme has rolled out. Disability service is the fastest growing sector of the workforce, creating one in four new jobs. Growth is underpinned by the rights-based paradigm of the United Nations Convention on the Rights of Persons with Disabilities, which prioritises equal citizenship and inclusion of people with disability in all aspects of society.

The years of benign neglect of the disability sector have created major challenges to the sector’s capacity to deliver quality services to support the policy intentions of the NDIS. Indeed, the Royal Commission on Violence, Abuse, Neglect and Exploitation of People with Disability systematically uncovered entrenched practices of abuse and neglect that undermine people’s human rights. In the past work in disability has been low status. This together with the absence of a dominant profession leading practice has meant, until very recently, there has been scant research to inform the design of services and staff practice. Where research does exist, the transfer of knowledge from universities to providers has been a matter of chance.

Organisation of the Book

Written by leading practice researchers, this book fills a major gap by translating research and practice wisdom into the knowledge and practice needed to design services and to prepare staff to deliver enabling support. Most chapters focus on a distinct quality of life domain and consider:

  • Why is this domain of quality of life important, and what disadvantages do people with disability face in this domain?

  • What are the roles of support services in improving quality of life in this domain?

  • What evidence is there about the design of services and the practices necessary to deliver quality support in this domain that disability service providers need to know?

  • What do disability service providers need to know about other related service systems in order to maximise benefits in this domain for the people they support?

The book’s primary focus is adults with intellectual disabilities. They are the largest single group of adult disability service users, many of whom have complex support needs, secondary impairments, and associated health or mental health problems. They are arguably among the most disadvantaged and neglected groups of people with disabilities, who require support across their life course in all life domains to exercise their human rights. Quality services are particularly difficult to achieve for this group. They are also the group for whom the voices of strong allies are needed alongside their own to ensure their individual and collective needs are represented to governments and service providers.

The context of this book is Australian, but much of the content around design and practice for quality services will be relevant to a wider international audience. The book is concerned with issues of quality and safeguarding in service provision. More general issues for people with disabilities, such as structural and economic disadvantage and intersectionality, or for organisations, such as management theories, are out of scope unless they are immediately relevant to a chapter’s focus.

Ideally the book should be read as a whole, but each chapter is also written so it stands alone and can be read separately. For ease of reading, we have used minimal referencing and included a concise set of take-home messages at the end of each chapter.

  • Chapter 2. ‘Thinking About Disability: Implications for Practice’ by Christine Bigby introduces the diversity of people with disabilities and the merits of different models of disability for informing practice. She also reviews disability policy, individualised funding models, such as the NDIS, and the eight domains of quality of life.

  • Chapter 3. ‘Building Strong Foundations: Listening to and Learning from People with Intellectual Disabilities and Their Families’ by Aaron J Jackson and Christine Bigby explores the importance of the voices and perspectives of people with intellectual disabilities to service provision. The authors highlight what service providers can learn from actively listening to individuals with intellectual disabilities and emphasise the critical role of family in the lives of some service users, particularly those with severe or profound intellectual disabilities.

  • Chapter 4. ‘Supporting Community Participation’ by Christine Bigby, reviews different ways of supporting community participation. Through examples, she illustrates different programme designs, support worker skills and organisational features necessary to provide quality and individually tailored support for participation by people with intellectual disabilities.

  • Chapter 5. ‘The Importance of Economic Participation for Quality of Life’ by Vivienne Riches identifies the barriers and opportunities for people with intellectual disabilities to get and retain jobs of their choice. She describes the most effective employment models and good practices from across different employment programme types.

  • Chapter 6. ‘Relationship-Based Practice with People with Mild Intellectual Disabilities Who Have Been Socially Marginalised and Excluded’ by Kathy Ellem and Jemma Venables illustrates how disability support workers, organisations and service systems can support authentic and caring relationships with people with mild intellectual disabilities. They argue that relationship-based practice provides the context in which this group can build individual capacity, knowledge and resources to navigate the challenges of everyday life.

  • Chapter 7. ‘Supporting Engagement in Everyday Life at Home and in the Community: Active Support’ by Christine Bigby tackles the reasons for poor quality of supported accommodation services and presents evidence that when staff consistently use Active Support the people they support have higher levels of engagement and a better quality of life. She lays out the essential elements of Active Support and the frontline managerial practices, such as Frontline Practice Leadership, and organisational features necessary to embed it in services.

  • Chapter 8. ‘Healthy Lifestyles and Primary Health Care’ by Jane Tracy and Teresa Iacono reviews why people with intellectual disabilities often experience poor health. They then focus on the roles of disability services and support workers in both contributing to optimal health through direct support for individuals and supporting their interactions with health systems.

  • Chapter 9. ‘Supporting People with Complex and Challenging Behaviour’ by Laura Hogan and Christine Bigby uses case examples to illustrate how to apply evidence-informed principles to support people with complex needs. They propose a framework for the practices that must be in place to ensure the quality of life of adults with intellectual disabilities and challenging behaviours in the context of accommodation supports.

  • Chapter 10. ‘Support Planning with People with Disabilities’ by Tal Araten-Bergman explores the purposes of support planning, from determining funding and setting broad life goals to creating detailed blueprints for delivering a specific type of support. She sets out the principles, thoughtful processes and person-centred actions necessary to avoid support planning being a meaningless paper exercise.

  • Chapter 11. ‘The Right to Participate in Decision Making: Supported Decision Making in Practice’ by Christine Bigby reviews the contested nature of substituted and supported decision making and proposes a principled approach that puts the person’s will and preferences at the centre of all decisions. She alerts service providers to the varied landscapes of decision making and explains an evidence-based practice framework for supporting decision making that is applicable across all types of decisions and contexts.

  • Chapter 12. ‘ ‘Nothing about us without us.’ Including Lived Experiences of People with Intellectual Disabilities in Policy and Service Design’ by Sian Anderson and Christine Bigby reviews different approaches to tapping into the expertise of people with disabilities from their lived experiences of disability and the practices that are most effective for working together with people with intellectual disabilities. They consider some of the unresolved issues that support workers, managers and policy makers grapple with to further the rights of people and ensure there is ‘nothing about us without us’.

  • Chapter 13. ‘Organisational Culture in Disability Accommodation Services’ by Lincoln Humphreys explains the significance of culture in disability services and its influence on staff behaviour. The chapter explores the characteristics of culture in good and poor quality services and considers actions that organisations and frontline managers may take to change and maintain culture.

  • Chapter 14. ‘Building Quality and Safeguarding into Disability Service Provision’ by Alan Hough and Jade McEwen demystifies what workers and service providers should do to deliver high-quality and safe supports while acknowledging the complexity involved. They argue that strategies should be integrated into standard ways of working rather than approached as a box-ticking exercise disconnected from day-to-day practice.

We acknowledge the generous donors who enabled us to make the book open access. We also thank the authors of each chapter for their commitment to this project. We hope that in some small way this book contributes to improving the quality of life of people with disabilities as readers use the evidence and practice wisdom it captures to improve the design of disability services and quality of support they provide.