We are a family of six who live in the northern part of Sydney. The NDIS started in our area in July 2016.
My son, Tom, is 19 and has been doing a Transition To Work program with the charitable social enterprise Fighting Chance since he left school at the end of 2015.
I knew that his details would be sent direct to the NDIS when it opened in our area by the state government. Because his TTW program was funded by the state government, they would pass his details on.
Knowing that he is fairly high functioning, I didn’t expect to get any movement quickly on his case. I had heard that the people in greatest need were first in the queue: quite right.
Fighting Chance did a briefing about the NDIS with me, and we started to create goals for my son.
To live independently by the time I am 25
To engage in paid employment and to work towards full-time employment
Then I had a call from the NDIS for an intake questionnaire where it was confirmed that he did indeed fit the criteria to be an NDIS participant and he was given his NDIS number.
We waited again and prepared by writing out strengths and weaknesses and watching videos and aiming to understand the process.
My husband and I were then called into a meeting with an NDIS planner at the NDIS office in Chatswood.
She went through a list of questions about our son’s goals, daily living skills, employment options and desires, supports needed, and supports current right across the board.
This process did make my husband and I realise how much support we currently give our son, also how much he could benefit from other supports.
My son did not want to come to the meeting and he would not have liked sitting there talking about which areas he needs help in.
I did feel conflicted about him not attending, as the aim of the NDIS is to be person-centred and for the participant’s goals and desires to be central.
But my son does not have great self awareness and would also have found all the talking and discussing hard to follow and would have been very bored and restless.
However, I don’t feel great about the fact he didn’t come and hope that he will attend meetings in the years ahead as he progresses.
by Shona Sutherland
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