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Rosemary’s story

Feb 04 2020

Rosemary Windhaus was a young woman who enjoyed traveling the world, working as a firefighter and running her own successful yoga business, before acquiring a brain injury from Susac Syndrome, a rare condition which affects her cognition, motor function and hearing in January 2017.

This is her story.

Everything changed after my brain injury. I was reliant on the support of my aging parents and my life was focussed around attending medical appointments and that’s pretty much it. My life had changed completely; aside from sleeping and TV, I had nothing else in my life.

In 2018, I accessed the National Disability Insurance Scheme (NDIS) and was fortunate enough to secure a funding package that I self-manage to enable me to live the life that I choose, and engage the supports that I need, to meet me where I am at.

I now have a more fulfilling life; I have been able to access services that enable me to function better such as physiotherapy, occupational therapy, and psychology. I now receive the supports that I need to enable me to continue living in and maintain my own home.

At the outset, I wasn’t convinced that the NDIS would make a difference in my life, but being able to develop my own goals and engage my own people has been good for me. I didn’t want, and I still don’t want, traditional support and services from support workers who approach me and life as my disability.

I don’t have support workers; I have a sorority of sisters. My sorority are people that I have intentionally engaged to utilise their skills, experiences, and interests that meet my needs. They are people who support my continual growth and development and challenge me when I need to be challenged. I want to continue living life as independently as I can, and they assist me to do so.

My relationship with my parents is strengthened, because now they can be just that, my parents. I no longer need to rely on them for managing every aspect of my adult life.

I am so thankful for the support that I receive and the life that I now live due to my NDIS funding. I experience lots of fatigue, ups and downs, and bumps in the road; my funding and the way in which my supports are set up allows me to have supports in place for and when I need them most.

I am so happy with everything; the people around me have supported me to understand that I need help to do some things that I couldn’t for myself. Places that I couldn’t or wouldn’t go or experience because of my need to get used to having a disability. For me to recognise and accept the position I’m in and the person I now am has been difficult. It’s taken some time for things to be set up but I have my “sorority” now and I am utilising my supports as much as I can. I now realise that accessing and utilising professionals is something that I benefit from doing.

This year, I had the support of my Local Area Coordinator (LAC) who enabled the application for household modifications to be progressed and approved. My planning meeting with the LAC was what I needed; my planner met me where I’m at and assisted me to secure funding to enable me to continue to live a life where my needs are met and I can continue to grow and develop.

My advice to others is come to the NDIS planning meeting with an idea of what you need, clearly defined goals in mind of what you want your future to look like, and get the appropriate supports around you to help you to do this. Have a support team that meets your needs. Have a think about the things that you need and how to access that. Find others who you can trust, whose guidance you seek.

Would you like to know more about the NDIS?

Carers Queensland can support you to find out more about the NDIS, to apply for funding, and help you get started with the NDIS.

If you have a disability but are not eligible for the NDIS, Carers Queensland can also help you identify and link to options in your community.

To find out more about how the NDIS and Local Area Coordination program can work for you, visit Carers Queensland NDIS Local Area Coordination Partners in the Community Program for the Brisbane region at Garden City Office, Building 20, Level 1, 2404 Logan Road, Eight Mile Plains or call 3719 9600.

You can also contact Carers Queensland on 1300 999 636, or cq.enquiries@ndis.gov.au