Kōrero with Brigit Mirfin-Veitch from DBI

In this series we will share kōrero with some of our project team leaders as they reflect on how their teams are responding to the call to rethink and reconceptualise supported self-management.

What is the most interesting and useful thing you’ve thought about related to self-management support since we started this grant?

Exploring the intersection between these various notions of self-management and where supported decision-making fits within those definitions or ways of thinking about self-management.

That was a motivation for us doing what we are doing, and it is heartening to see how it is emerging through the research.

What has been your teams biggest challenge in the nearly 2 years the programme grant has been running?

The biggest challenge is our biggest joy, which is the community we are working with - people with a learning disability. 

To be really genuine and authentic about how people with a learning disability are involved in and directing the project.  We are constantly thinking about how to be really accessible to our advisors in all ways.  That is in accessible in how they come into our online advisory meetings, the agenda, how they set the agenda and the work we are doing. 

When we come together in person there are a lot of logistics to think about.  We need to structure our agenda so everyone can participate and contribute, that it is accessible to everyone.  And what you get from that commitment to accessibility is amazing contribution, growth, and really fantastic insight and ideas about self-management and supported decision-making. And really in a nutshell, for our advisory group, it is all about choice and control.

What do you see as key changes, innovations or disruptions that might shift us away from a conventional form of SM?

It is becoming clearer that Self-management and supported decision making are interconnected. But it’s all about choice and control over your own health in a broad sense, but also being self-determining in how you respond to particular health issues.

So, the big disruptor that would make the most change for people with a learning disability, would be legislative change that embeds and honours article 12 of Human Rights convention on the Rights of Persons with Disabilities.  In my words, Article 12 of the United Nations Convention on the Rights of Persons with Disabilities says:  All people have legal and mental capacity and that if people have people have difficulty expressing that capacity, and supported decision making is the mechanism to help them do that. 

In this way, a massive disrupter would be if our legislation, particularly around adult capacity law, if it really gave expression Article 12 would be to make support decision-making a mandatory approach – including health services and the health workforce.  

This is linked to Article 25, ‘that people have the right to the highest attainable standard of health’ and they need their health professionals to understand how supportive decision-making works, why we have it - that would transform people’s health experiences. This would be my disrupter at a systems level.

My disrupter at an individual level would be creating opportunities for people with a learning disability to be confident in their right to choice and control. And for supported decision making to be widely understood and recognised as a way ensuring choice and control for this group. 

This disrupter would be coming from a self-advocacy lens.  People with a learning disability understand the power of self-advocacy and we need people with learning disability as leaders and educators. Hopefully this outcome leads to developing something people can deliver to their peers about what they should expect in terms of their rights to health care.

How would you say your teams’ thoughts have changed about what self-management means to your project and your community?

The thoughts changing have been the very stark reminder that people with a learning disability look to people and things outside of the health system and health professions to support them with their health. This suggests that educating health professions and health professionals is not the only way of improving health outcomes for people with a learning disability.

What will having the ‘shifted the dial’ look like in a meaningful example for your community?

That people with a learning disability don’t tell me that they’ve gone into health consultations, appointments, and settings and the professional talks to the person that is there as their assistant.

It won’t be people with a learning disability telling me ‘I haven’t been given the information about my health in a way I understand’

It won’t be people with a learning disability telling me, ‘Actually I know what works better for me but no one lets me tell them that what I think’.  

It won’t be, people with a learning disability telling me ‘I want to do something else here or make a different decision about how to manage my health but no one will let me’

These are the things people having been telling me for 30 years.  Shifting the dial will be when people stop telling me these things.

What does your project work look like in the next 12 months?

Developing, implementing and evaluation our ‘intervention’.  This may involve something that already exists and is underutilised, or might involve something new.  And addressing the big gap in awareness and understanding of supported decision making within the health sector.

About Brigit: https://www.donaldbeasley.org.nz/about/our-people/assoc-prof-brigit-mirfin-veitch