Group 3

“I feel that offering feedback in an NDIS review process is an important contribution”

Meet Maha, who recently joined the NDIS. Maha shares her experience and why she chose to make a submission to the NDIS Review.

My name is Maha, and I am fortunate to have mainly positive things to say about the NDIS. I am self-managed and have been using this government service for approximately 18 months. So far, it has proved to be an essential part of my everyday needs.

I have relapsing-remitting multiple sclerosis and people often remark, “but you don’t look disabled”. As such, I feel that offering feedback in an NDIS review process is an important contribution. It can go a long way in enabling understanding that each NDIS participant doesn’t fit neatly into a generic definition of what it is to be disabled. 

So, I made a submission of my experiences, hoping to promote greater awareness around the nuances of disability and the limitations one can experience daily. Doing so helped provide me with a feeling of empowerment: My opinion matters and might prove helpful for others living with a chronic medical condition.

I am a 48-year-old woman. I experienced my first MS relapse at the age of 17 and was diagnosed at 20. At that time, no drugs were available to help relieve the symptoms of MS. I was in my mid-20s when I was offered the first of the interferons available for treatment. Thus, I could be considered a veteran – I have lived with MS for almost 30 years and am well-versed in the array of medicinal options available. As such, it has always been high on my list of objectives to contribute to knowledge surrounding MS and its effects.

To complicate matters, I had a motorcycle accident at 26. As a result, I had 15 orthopaedic operations to save my right leg and some plastic surgery also. All in all, the left side of my body is affected by my neurological condition, and the right side is transformed by road trauma.

I’m not sure if submitting my thoughts concerning the NDIS will make much of a difference in the grand scheme of things, but I know I’d much rather offer feedback and critique for future refinement of the scheme than not. If that makes the service better for all in the long term, it’s a worthwhile endeavour. I believe the NDIS is a vital government initiative that is meaningful and crucially needed in Australia.

Maha contributes to the work of the Summer Foundation

You can have your say in the NDIS Review, find out more here.

If you would like to share your experience, please contact us at: peersupport@summerfoundation.org.au

Check out our other stories from people with lived experience of disability here

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