Making My Own Decisions About My Health and Wellbeing

Managing and making decisions about our health, and staying well, can be hard. This can be even harder if we have long-term health problems, or more than one health problem. 

We don’t all get the services and supports we need to manage and make decisions about our health. When we don’t get the support that is right for us, it can cause more problems with our health. In Aotearoa New Zealand, this is a problem for many people with a learning disability. We want to find ways to make it easier for people with a learning disability to manage and make their own decisions about their health.

We are going to talk with a lot of people with learning disabilities to find what would help them with their health. We will also talk to some health professionals (like doctors or nurses, or hospital staff), whānau, and supporters. Once we know what the best ideas are, we will try out the ideas, and find out how well each idea works. 

We will give updates about the research as we go. We hope that what we learn will be helpful to a lot of people with a learning disability.

Our research team is made up of people from the Donald Beasley Institute, People First New Zealand Ngā Tāngata Tuatahi, University of Otago, and Auckland University of Technology. 

Associate Professor Brigit Mirfin-Veitch – Project Lead

I am the director of the Donald Beasley Institute.  I am based in Ōtepoti Dunedin. 

I think that people with a learning disability should always be able to make their own decisions about their health and health care. I am the project lead for this project. That means that I make sure that we have everything in place for it to work well. 

Dr Nic McKenzie – Research Fellow

I carry out the day-to-day work on this project.  I am based in Ōtautahi Christchurch.

I work with people with learning disabilities on projects about communication, making decisions, and rights.  This project has all of those things, and I am excited to be part of it. 

Patrick Doherty – Community Research Co-ordinator

I am the ‘Learn With Us Co-Ordinator’ for People First New Zealand | Ngā Tāngata Tuatahi.  I am based in Whakatū Nelson. 

In this project, I am working with our advisory group and participants with learning disabilities.  I organise the community research activities. 

Julia Young – Research Advisor

I am a research assistant for this project.  I am based in Ōtepoti Dunedin. 

I have lived experience of learning disability and I use animal soft toys to communicate when I am feeling shy, anxious, nervous, or if I just want to. I am involved with our community partner, People First | Ngā Tāngata Tuatahi.   I am an advocate for the rights of people with learning disabilities. 

Dr Henrietta Trip – Researcher

I am a senior lecturer at the University of Otago Centre for Post-Graduate Nursing. I am based in Ōtautahi Christchurch. 

In this programme my role is to give advice about  learning disability, health, and how to do the research.  

Professor Kate Diesfeld – Researcher

I am a Professor of Health Sciences at Auckland University of Technology.  I am based in Tamaki Makaurau Auckland. 

In this project my role is to give advice about disability law and supported decision-making.