My name is Todd Winther. I am 26, have cerebral palsy and confined to an electric wheelchair. I require personal care for short intensive periods to help with dressing, showering, toileting and food preparation. Aside from these basic tasks, I can do most other things by myself and I am fiercely independently.

I currently live with my parents in comfortable circumstances. They both work full time, 10 hours a day, 5 days a week. When I am not at my part time job (As a university lecturer and tutor in political science), I am alone for this period of time, as I can manage my time around my toileting issues. I can use my bladder at home by myself where all my equipment is at my disposal in easy to reach places.  Because I live with my parents and they have a double income, I am not entitled to any government funding at all. In fact when I make repeated inquiries to Disability Services Queensland (DSQ) they get rejected as I’m repeatedly told ‘I’m not disabled enough’. The only support I do receive is from Blue Care who come in to shower and toilet me for an hour each day five days a week.

Having a disability is less about physical limitations, and more to do with a lack of choice. Everything in my life is very clinical, get up at this time, eat this time, have a shower at this time, go to bed at this time. Whilst I acknowledge this is and will always be the reality for my entire life a minimal amount of funding would allow me a great deal more freedom than I have access to now. The autonomy that a few more hours a week would give me should not be underestimated. It would also alleviate the burden on my parents. Whilst they are incredibly supportive and understanding, they are also getting older. Furthermore, I believe that their lives should not revolve around meeting my physical needs, for they have their own lives to lead.

A few more hours a week would also decrease the strain on my body and allow me to go to the toilet when I feel like it, and not necessarily when the schedule dictates. A few more hours a week would also allow me to eat at more regular intervals. There are often instances during the day when I do not eat at certain times because I know it will adversely affect my toileting patterns. Most importantly though, a few more hours a week would allow me to increase the amount of hours that I work. Currently I am faced with the choice of working less hours and going home to toilet myself, or having to pay someone to take me to the toilet out of my own pay check. 

I am fully aware of the funding arrangements that relate to people with disabilities and I acknowledge that there are tight budgets and there are a limited amount of resources available. I am also aware that my needs are not the most urgent when weighed up against the criteria for funding arrangements. However, a minimal amount of funding would allow me to become more autonomous so I can contribute to my community in the way in which I desire. Because I am not homeless, a ward of the state, or have a direct relative with a disability, I am not entitled to even one cent of money. 

I would desperately love to live independently and this is a very achievable with some moderate support from the Federal and State Governments.   I would not consider myself to have a severe physical disability, but I still require at least 5 hours of support a day to help with showering, toileting, cooking, transferring in and out of bed, as well as basic domestic activities. I have calculated that the cost of paying of my personal care is around $40,000 annually for the rest of my life, which I hope is 50 years or more.

It is in this environment that my family and I live. I have things I want to contribute to the community, I want full time employment, and to move out of home once I finish my PhD in 2 years. I want to take a job as a political strategist, or become a full time academic at a university. Under my current arrangements this would be almost impossible. This why I love the idea of an National Disability Insurance Scheme (NDIS) and have been advocating for it loudly since this potential policy was floated.

Under the proposed NDIS it would give the control of allocating my own funding. The troubles I have had in the past have been exacerbate by the fact that charities and advocacy organisations think they know what is best for me. They have done so without consultation. I am entitled to determine my own funding how I see fit. according to my own needs and disability without the needless bureaucrats with no practical exposure to people with disabilities.

The Government must implement the proposed NDIS.