NDIS Experience - The Princes Ron and Lynne Prince have two adult children. David is 34 and Belinda is 32. Both Dave and Belinda have Fragile X syndrome, and they are NDIS participants in the Newcastle NDIS trial site in NSW. Ron & Lynne, with the permission of Belinda and Dave, have offered to share their experiences around how changes to the disability support system have impacted their lives over the past 3 years, allowing Belinda and Dave to achieve their goals and continue to create a good life for themselves. About Belinda and Dave Both Belinda and Dave work in supported employment situations. Dave works 3 days per week as a groundsman at Newcastle Uni. Belinda works 2.5 days a week in a Therapeutic Packaging business. They have been living away from the family home for over 6 and half years, in their own home which they share. Up until June 2012 they had been supported in their independent living in their own home predominately by us. In June 2012 Belinda and Dave were fortunate to each receive their first selfdirected packages through the Supported Living Fund, which was a NSW state govt initiative. They were the first people to transition in the Newcastle area into NDIS, in July 2013, and they are now into their third year of NDIS funding. Goals and aspirations Everyone should have the right to choose the way they want to live their lives. Goals and aspirations, and knowing what you want to do or achieve out of life, is important for everyone. The NDIS means that choices and control are becoming available to a person with a disability. From our experiences we suggest that for a person with a disability who is entering the NDIS it is especially important that they have an idea of what they want to achieve out of life, before they meet with an NDIS Planner to create their NDIS plan. Planning for the NDIS: A picture paints 1,000 words! We encourage parents, carers and people working with people with disabilities NOT to wait for NDIS to come to you - you should NOW be talking and engaging with the people you support to think about what they want out of life. They don’t necessarily need funding to start dreaming and setting goals for what they want to achieve!! The Supported Living Fund introduced Dave & Belinda to the concepts of their Dreams, Aspirations and Goal setting to determine their own support and funding requirements. The planning process used to help them come up with their own ideas about what they wanted to achieve over the next 1-2 years is known as a PATH. (Planning Alternative Tomorrows with Hope. ) These PATH sessions allowed Belinda and Dave to capture their goals & ideas in a simple diagrammatic way, giving Dave & Belinda a picture of what they wanted to achieve, and made it easier for them to talk with the NDIS Planner about what they would like to achieve.
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December 2015
Fragile X Association of Australia