Bridging the great divide between research and practice

‘This book is dedicated to people with disabilities, especially to those whose quality of life has been diminished, or who have been harmed, or who died as a result of service provision.’

“To err is human, to cover-up is unforgiveable, and to fail to learn is inexcusable.” —Sir Liam Donaldson, champion of quality and safety.

Professor Chris Bigby and Dr. Alan Hough are co-editors of the book ‘Disability Practice: Safeguarding Quality Service Delivery’, which explores the core argument that good practice is essential for ensuring quality services. One of the purposes of writing the book was to produce a resource that was practically useful to disability service providers.

The book was released in December 2023 and currently has over 23,000 downloaded copies. It has a primary focus on adults with intellectual disabilities however, a lot of the content is applicable to all people with disability. It is a collaborative work of 13 authors each with their own area of expertise. The book can be read as a whole or by a specific chapter. Most chapters focus on a specific quality of life domain, and a standout element of the book is that it includes real life examples and case studies. There are also a number of other handy resources throughout such as examples of practice frameworks, tables and resources.

What sets this book apart is readability. We are used to seeing research journals full of academic language that often don’t fall into the hands of service providers because not many people are going to take the time to unpick an academic journal. This has created a disconnect between valuable research and practice. The editors were aware of this gap and, to make the information useful for the widest possible audience, wrote the book using deliberately accessible and approachable language, in the process creating an excellent resource for executives, managers/leaders, allied health professionals, students and Disability Support Workers alike.

In short – this book should be an easy read for all and hopefully we will see more of this type of writing from researchers moving forward.

What is it about:

‘Disability Practice’ argues that the key to providing high quality support depends on good practice, and the knowledge and skills of the people delivering and leading those supports.

The book has 14 chapters that focus on different areas of research covering:

• Thinking about Disability Practice

• Building Strong Foundations: Listening to and Learning from People with Intellectual Disability

• Supporting Community Participation

• The Importance of Economic Participation for Quality of Life

• Relationship-Based Practice with People with Mild Intellectual Disability Who Have Been Socially Marginalised or Excluded

• Active Support

• Healthy Lifestyles and Primary Healthcare

• Supporting People with Complex and Challenging Behaviour

• Support Planning for People with Disabilities

• The Right to Participate in Decision-Making: Supported Decision Making in Practice

• ‘Nothing about us without us’. Including Lived Experiences of People with Intellectual Disabilities

• Organisational Culture in Disability Supported Accommodation Services

• Building Quality and Safeguarding into Service Provision.

Each chapter highlights research on a topic, areas where services could improve and provides direction on how they could go about doing this.  At the end of each chapter there are key take home messages in dot point form, as a way of acknowledging that time is precious and not everyone is able to read a full book. The snapshot messages provide enough detail for a casual reader to walk away better informed and inspired to act.

What you will find in each chapter of the book, is real life examples from the perspective of the people we support and practical recommendations on how to implement models that are anchored in best practice. In the absence of a clear guide to the research, providers are often having to create their own unofficial models of support. This book provides a ‘how to guide’ that will lead to quality outcomes for the people we support and also make it clearer to Disability Support Workers on what is required from them in their role.

Let’s take Chapter 4 as an example, which is titled ‘Supporting Community Participation,’ which demonstrates that all people with intellectual disabilities can participate in the community with the right type and amount of support in place. The chapter contains real life case studies that highlight the connection between community participation and quality of life.

The author, Bigby, first shares research that shows there are low levels of community participation for people with intellectual disabilities, especially for people with more complex support needs. Low expectations of people with intellectual disabilities can result in people being supported to be ‘present’ in the community rather than participating and engaging in activities and social interactions.

There are a number of recommendations the author makes around Supporting Community Participation, including that support must be tailored to each individual, that focus needs to be placed on the role of supports both at the frontline level and behind the scenes and that programs be well designed with workers being accountable to Practice Leaders.  

The author then shares a Practice Framework to support Community Participation which covers:

Principles:

• Reflecting individual preferences and support needs

• Acknowledging the importance of engagement

• Recognising the need for frontstage and backstage support

• Collaborating with natural supporters

• Working in teams and being reflective

Process:

• Knowing the person and planning

• Exploring possibilities

• Negotiating

• Supporting and maintaining

Skills and Knowledge:

• Person-centred planning

• Community development

• Micro support skills

So why read this book when there’s so many other things going on?

With funding constraints and compliance responsibilities, taking the time to invest in reading something focused on practice can almost feel like an unrealistic luxury.

The bigger question is, as many of us are swimming in policies, procedures and a growing amount of administrative tasks, what happens if we continue on as we are and don’t shift our focus to practice.

People we support deserve high quality services with enabling supports. In fact, many would argue that it is a basic human right that people should be able to expect that all supports they receive to be evidence based with a focus on quality of life outcomes. The findings in the Final Report by the Royal Commission, however, shows this is not always the case. To see the sort of change we need, providers must value a focus on evidence-informed practice in all areas of support and this book can be a useful tool to help make that happen.

Impact on me:

I loved this book! Everything felt so relevant, and the case studies were incredibly impactful. Every chapter had a personal take away, a call to action that actually felt achievable. I kept seeing my service on the pages and saying, “we could do that.” No other resource or guide has been able to do that or offered so many practical ways to improve the quality of supports being delivered.

One of the biggest takeaways for me was that the responsibility for good practice doesn’t just sit with support workers, it must be lead and driven by leaders within an organisation. Creating a mini community of practice, and asking everyone to consider reading the book, from the frontline leaders to the finance teams within my organisation has been an absolute game changer. We have been approaching each chapter with a ‘how are we measuring and what can we do to improve’ attitude.  

Another area that stood out to me was ‘Listening to and Learning from people with an intellectual disability’. Ensuring that we are not getting caught up in the way we think services and supports should be delivered but placing more value on ensuring the people we support, and their families have the loudest voice when it comes to service design.

I realised it was time to think about peeling back the layers on service delivery and considering how much is evidence based and identifying areas for improvement.

Next steps?

With so much covered in the book, you may walk away a little like I did, ready to implement a list of things and also wondering ‘where on earth do we start?’ How do we ensure that this isn’t just a nice book we’ve read but something that actually impacts the nature of the supports and services we provide? How do we implement change to practice that is sustainable with a long-lasting impact?

Chris Bigby and Alan Hough are going to guide us through the next steps and how to go about implementing the research into practice at a webinar we are hosting Wednesday 10^th April 1-2:15pm. The book Disability Practice: Safeguarding Quality Service Delivery is open access, which means you have free and unlimited downloads. So, grab a cuppa and a copy, read through it and then join us for the webinar to look at the book in more detail.

Artwork by Sally Tran from Bayley Arts. Bayley Arts supports artists with a disability to create, exhibit and sell art. Learn more about Bayley Arts.