How Can I Participate in this Project?

My name is Michelle King and my daughter (now aged 20) lives with profound and multiple disabilities. I’m doing research for my PhD on how young people like my daughter become adults in Australia’s legal and administrative system. What does the process of becoming a legal adult look like when a young person lives with severe intellectual disabilities? How does the legal system and government agencies deal with this time in that young person’s life?  I’m interested in talking to people about their experiences with legal and administrative decision making with and for young people living with severe intellectual disabilities as they become legal adults in Queensland.

I’m at the Australian Centre for Health Law Research, which is in the Law School at the Queensland University of Technology (QUT). My PhD work is about the social and legal transition to adulthood of people living with severe intellectual disabilities in Australia.  I’m interested in how our current legal and administrative systems (like the NDIS, Centrelink, Disability and Community Services, guardianship and administration, banking and finance, and other similar agencies) work for young people living with profound and multiple disabilities as they become adults.  I am looking for people to talk to who have been a legal and administrative supporter of someone living with severe intellectual disabilities during the time they became an adult. 

You might be able to help me by agreeing to be interviewed about your experiences if:

  • The person you support lives with severe intellectual disabilities.
  • The person you support is now aged 18-30.
  • You made or provided support for some or all of their legal and administrative decisions when they were 14-18.
  • You can be a parent, step-parent, grandparent, other family member, or anyone else who made legal decisions for the young person you support.
  • You and your young person live in Queensland.

The interview will be with you AND the young person you support and would take around an hour and a half of your time. The interview can be at any place convenient to you and the person you support. The information from the interview will not be identifiable and you and the young person you support’s name and identifying details not be published.  

What is the Interview about? We will talk about what is important to you and the young person you support. I will ask about what your experiences were around some or all of the following areas of a young person becoming a legal adult:

  • Experiences with funding and other financial supports, like the NDIS and other government agencies.
  • Experiences with applying for and managing the Disability Support Pension and dealing with Centrelink.
  • How decisions about banking and money are made.
  • Decisions about accommodation and living arrangements.
  • Experiences employing and managing support agencies or support workers and other staff.
  • How medical decisions are made (like about medication, doctors, and dealing with Medicare.
  • Decisions about equipment, such as purchasing wheelchairs, communication aids, or other support devices and equipment.
  • Whether you are a formal guardian or administrator (you don’t need to be a formal guardian to participate).

The interview is about your experiences generally, and will not require any private information, details about money, staff, NDIS plans, or any other personal information.

For this project, severe intellectual disabilities means the person you support lives with some or all of the following:

  • Significant and profound cognitive difficulties.
  • Little or no ability to use and understand verbal communication (poor or no functional communication).
  • Little or no ability to use and understand other forms of communication such as writing, symbols, and picture based systems.
  • Little or no ability to care for themselves: needs help to do all or most of their activities of everyday life like eating and drinking, going to bed and getting up, bathing, interacting with their environment and other people.
  • Needs support for all legal and administrative decisions: like dealing with the government and NDIA, dealing with money, hiring and dealing with staff, transport, and medical decisions.

If you and the young person you support would like to participate: Fill out the form below and I will email you with a full information sheet about the project. Feel free to ask me any questions you might have about taking part in the project. I look forward to meeting you and the young person you support and finding out more about your experiences!