Last week I sat through a presentation by the wonderful Alicia Gorman, a Specialist Speech Pathologist with a wealth of experience in relation to Supported Decision Making (SDM). She is a gun with SDM from not only a knowledge of frameworks but with broad experience in implementation and practice for pretty much all of the people she supports on a day to day basis. She is also currently doing her Masters degree in this field.
Some points she raised that I think are great reminders, especially in these times of thinking about and understanding consent, supporting autonomy and upholding the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) principles:
- Autonomy is not an individualised process – it relies on our relationships and support from others.
- Autonomy is a collective experience.
- It’s not a moment in time, our capacity to make decisions is not just on the here and now and the information presented in this discussion today.
- It’s not about yes and no. It’s about exploring thoughts, the information, exploring and unpacking context.
- Decisions can be a snapshot in time and do not represent my decision into the future. My decision today might be different next week depending on the context and the information I have available.
I recently shared a link to one of the known evidence based Supported Decision Making resources by Latrobe University. If you have not had a chance to check it out, please do. You can find the link to this resource here. You might be aware of other Supported Decision Making frameworks that are comprehensive, evidenced based and applicable to practice. Of course, we continue to love the work of WA Individualised Services (WAIS) and Development Disability WA (DDWA) in this area and look forward to more resources coming from them in the near future, especially in relation to support for people with Complex Communication Needs (CCN). If you don’t already have access to the WAIS resources, you can find them on this link. And of course the National Disability Services also provides free e-learning that might get you started if this area is new to you.
On the topic of Supported Decision Making with people with CCN, there are few resources and guidelines for how to do this well in actual practice and how to embed in a person’s life beyond what they choose to do today. This area takes considered thinking and investment of time to truly understand and develop competency in this area. I often state and will say again in this space, I think we should be looking towards those advocacy and family led organisations who have developed significant experience in this area, particularly in relation to how networks of supporters partner with individuals to support autonomy across their life.
Perhaps in our continued exploration of this area we need to stay mindful of the following:
- It is a process of really knowing the person and how they communicate in multimodal ways.
- It’s about capturing how a person is naturally indicating decisions in their everyday lives.
- Having access to information in ways that supports their processing and expression.
- Having information related to decisions presented in multiple ways including unpacking and discussing the detail needed to genuinely understand the context, having this information and more presented and discussed over the period of time the person needs to fully understand the context, and having information related to the final decision presented in ways that is a true reflection of their own thoughts.
- How skilled are the people involved in using or accessing the person’s preferred communication access needs to always be asked.
And perhaps a story to relate this to before we finish…
Paul is a young man with intellectual disability and complex communication needs who lives in his own home with the support of mentors and his best friend from high school (who does not have a disability). His mentors raised the discussion as to whether Paul would like to get the flu shot this year. Together they researched what a flu shot is, why we might have one, what it is like to have one. This was done using multimodal discussions such as using his communication device, watching videos, developing and discussing a talking book about the subject. Each of his family members and mentors also talked about what they think about the flu shot and why they might decide to have or not have one. A visual based decision-making process then occurred over few days to discuss how he felt about having a shot and his decision around this. He initially stated that he didn’t want to have one.
His supporters asked him about why he was feeling like he didn’t want one and he replied with a series of questions. Where? How? Who? Again, using his visual communication system. As they unpacked these with him, he wanted to know where the flu shot would take place, who else would have one, and more information about the context. He identified that he would like to have the shot at home, and some of his friends he would like to have there.
His Team Manager happened to have a friend who was a doctor and in discussion she explained that there was a program for people identified as vulnerable to have their flu shot at home. She organised for this to happen and for other people in his family and his Support Workers to have their flu shot at the same time. When asked again, with all of this information available, if he would choose to have a flu shot, Paul said yes.
On the day, everyone stood in a row and with Paul towards the back so he could watch the others have their flu shot. They shared with him how it felt as they had them done. When it was Paul’s turn, he said yes again to having the shot and presented his arm to the doctor. All was well.