Reaching my ndis goals

Opening Night at Greaser Art Gallery

My name is Deb Chilton and I am a published author and poet and visual artist. On Sunday the 24th February I hosted my first Brisbane solo art exhibition.

With Pat Swell, the CEO of Access Arts

Every participants plan under the ndis is based on their personal or their family's goals.  Funding should not be about a person's disability nor directly related to their disability. Rather it is a plan to enable an individual or family to develop the life they want to live. So the participants goals should reflect, where they want to live and whom they want to live with, in most cases that will be the participants family, however there are some individuals who choose to live on their own or with friends. 

My home doubles as my art studio

My ndis goals are around extending my visual arts practise and building my audience. I am also invested in community inclusion and building a diverse arts community in Ipswich.  I achieve this through working with the local art community and some of my artwork explores my own thoughts on what that community should look like.

I also have goals around being independent and remaining safe and confident in the lifestyle I live.  Choice and choosing how you as a participant want to be supported is a key reform in the ndis.  My support needs are unique to my disabilities and I only require individual one on one support, some equipment and supports around enhancing my daily living to participate in the community. 

One of my physio hit outs

For me I achieve this through a range of therapies to keep me fit and active. Prior to the ndis I found being supported by traditional support services limiting and I wasn't able to utilise my support hours in the way I wanted. This has been the most significant change for me under the ndis and I now direct my own support team.  For me this means sourcing the people who I feel are best able to support me, choosing how my staff will be engaged,  organising my own roster.

With my support team meeting guess at my art exhibition

The ndis allows family and participants to choose how and who administrates their ndis package on their behalf. As I am self-employed and run a small business I was able to choose to partly self-manage my own plan and funding.  I have my key support worker assist me in this role.  My speech is a major communication barrier so my key worker makes most of my phone calls either with me or on my behalf.

The ndis should provide all participants and their families with more choices and flexibility, however my experience is you need to voice what you want constantly and sadly many traditional providers just want to work with every participant in the same way. This is not how the ndis was designed to function and you shouldn't be bullied into doing things the way services want. However my experience is it's a lot less energy to just go with the flow and my ideals are wavering. 

Engaging my own support workers, though platforms like Hire Up and individual contracts has given me the flexibility I needed to take my art practise to the next level. Most services operate during the week, however the majority of art activities I engage in are after hours. Transport has always been and still is a major access issue for myself and others with disabilities. With limited means of transport and the costs, people with disabilities still have limits placed on the activities they choose,  I am very blessed to have support staff who are flexible to make my work schedules work.

Spider Web Block Print

My major ndis goal to have my first solo exhibition in Brisbane was only possible because I stepped away from the traditional support services and the generosity of support staff who were willing to work outside the box. 

I am passionate about making this a reality for others in the years ahead.  The ndis may be new but there are many things about the ndis that need to be fixed and better funded.  I hope this post gives you and your family the courage to build the life you want to live.