Supported decision-making for people with severe-profound intellectual disabilities

The 4^th Annual Younger People with very high and complex care needs Conference is taking place on 14-15 June 2016 at the Novotel Melbourne on Collins.

We had the opportunity to chat with one of our speakers, Jo Watson, Lecturer in Disability & Inclusion, School of Health & Social Development, Faculty of Health, Deakin University, Burwood Campus, about her role working in the disability sector.

With over 25 years’ experience working in the disability sector as a clinician, trainer, support worker, and researcher, how has working overseas in China, Hong Kong and the US assisted in developing your skills working in this sector?

Jo:

Working internationally has allowed me to gain a perspective of the diverse experiences of people with disabilities, their supporters and their families. Over the years it has become clear to me, that this diversity does not lie across individuals, but within the opportunities, resources and supports offered by the society of which that individual is a part.

As articulated by scholars such as Ed Deci and Richard Ryan, human beings, have a universal desire to lead an autonomous life with support from those in their lives they trust. These desires are reflected in the lives of all human beings, whether they live in Melbourne, Australia or the Mongolian desert. The diversity lies in the opportunities, resources, and supports people with disability have to lead a self-determined and inclusive life. Although we are all born equal, the resources, supports and opportunities available to us are far from equal.

You’re PhD thesis through Deakin University is currently under examination. Your PhD research has explored supported decision-making mechanisms with people with severe-profound intellectual disabilities and those who care for and about them. Are you able to explain some of the strategies to gaining information, and if possible, are you able to share any outcomes of your research?

Jo:

I could write forever on my research in this area, but in the interests of brevity I will try and keep it short! The adoption of and entry into force of the UNCRPD represents an important step towards promoting, protecting and ensuring human rights for people with disability.

Article 12 in particular, requires that a person’s right to self-determination should not be defined based on cognitive disability. Australia ratified the Convention in 2008. Since this time, tension has existed around the relevance and application of Article 12 for people with severe or profound intellectual disability.

Due to the interdependent nature of their lives, autonomous decision-making is obviously challenging for this group. However, if signatory nations to the UNCRPD are to live up to their obligations under Article 12 attention needs to be paid to how best to support this population to have their preferences heard and reflected in the decisions that are made about their lives.

My PhD research study had 2 aims:

• Firstly, I aimed to characterize supported decision-making for people with severe or profound intellectual disabilities.
• Secondly, I aimed to identify factors that underlie supported decision-making for people with severe or profound intellectual disability.

Over a period of three years I facilitated a process of supported decision-making that I developed with five people with severe or profound intellectual disability and a group of their supporters, targeting a range of life decisions. During this time, I collected and analysed interview, focus group, questionnaire and observation data.

Addressing my initial aim, I found that supported decision-making can be characterized for people with severe or profound intellectual disability in terms of the existence of two distinct but interdependent roles.

• Firstly, I found that the role of a person with a disability is to express preference.
• Secondly, I found that the role of the supporter is to respond to this expression of preference by acknowledging, interpreting and acting on it in some way.

Within this decision-making dynamic, supporter responsiveness, as opposed to focus people’s expression of preference, is the component that is amenable to change through structured practice guidance, making the enablement of responsiveness a crucial strategy for supporting decision-making.

Addressing my secondary aim, I identified a range of factors that underlie supporter responsiveness and therefore supported decision-making for people with severe or profound intellectual disability. This responsiveness can be characterized as dependent on several factors. I will share these factors with you in my presentation at the 2016 conference.

In summary, I hope my research, furthers understanding of what supported decision-making looks like specifically for people with severe or profound intellectual disability and gives a focus for practice and policy efforts for ensuring people with severe and profound disability receive appropriate support in decision-making, a clear obligation of Australia under the UNCRPD.

What have been some of the highlights of your career?

Jo:

It is very difficult to choose any particular highlights. The experiences that stand out to me are the opportunities I have had interacting and getting to know people with disabilities and their families. It is only by sitting and listening to the stories of our fellow human beings can we understand their life experiences. Sitting around a person’s kitchen table over a cuppa, or dare I say it, a beer, sharing stories has taught me far more about the lived experience of disability, than any text book or journal article ever could.

Are there any presentations from the 2016 Conference that you are particularly looking forward to and why?

Jo:

As always this conference provides an opportunity for people with a range of experience of disability to come together to share with, listen to and support one another in our ever changing world of disability related services.

I am particularly looking forward to hearing stories from people with disability, particularly in relation to their lived experience of transition to independent living. Di Winkler’s presentation on the Summer Foundation’s housing project is particularly exciting to me. Independent living is a key aspect of social inclusion.  I am looking forward to hearing how the projects are progressing and the Summer Foundation’s vision for the future in relation to building the ‘concrete’ supports that people with disability need to live a truly inclusive life.

I am also looking forward to hearing about Sladiana’s lived experience of transition into a community based group home. Sladiana’s support needs are highly complex, and it is important that stories like hers are told, so policy makers and legislators can understand what is involved in achieving true choice and control for all Australians.

I am also interested to hear from Jacqui Pierce from Karingal who will focus on empowering participants to ‘raise their voice’ within the context of the NDIS. Working for a service provider within the Barwon NDIS trial site, Jacqui can provide us with much needed insight into the functioning of the NDIS, particularly in relation to systems that allow participants to have their voices heard within the new system.

Finally, as always, I am looking forward to hearing from Sheridan Forster. Sheridan’s ground breaking work focusing on therapeutic interaction between people with high and complex support needs and those who support them, challenges me to consider how to maximise the quality of the interactions I have with those I support.

To view the upcoming Younger People with very high and complex care needs Conference agenda and list of speakers’ line up – please click here