want to make a submission to the government inquiry, into the processes and functioning of the NDIS.
The main issues that we want to address are…
1] The extreme difficulty / impossibility of being able to speak directly to the team responsible for giving permission to apply for a Special Disability Trust in 2020 and 2021. The NDIS staff who answered the phone calls when contacting Centrelink
-
Did not seem to understand what was being asked for
-
Did not let us know if our request had been received and understood
-
Would not let us speak to the SDT team about our request The end result was that in asking that our request be dealt with as a matter of urgency in November 2020, there was no response from Centrelink until May 2021. This in spite of the fact that anyone with Down Syndrome automatically qualifies to be able to set up an SDT
The end result was that…
-
We lost our pensions
-
We lost the grandfathering of my superannuation account with VicSuper
-
We lost the ability to be able to buy a house in SA. in my Son’s name, because the response from Centrelink came too late – 6 months too late.
-
We bought a house in April 2021
-
We had to move to South Australia with our son, who has a dual disability of Down Syndrome, and Major Depression with Catatonia.
-
We had to move because our other son and his family, had to move to South Australia for family and job reasons, and because we needed them to help manage all our disability son’s supports.
-
We lost the ability for to have a home that could not be sold out from underneath him, when we as parents have to move out into a nursing home – I am 80 years old and my wife is 85½.
-
We applied to get our pensions back in June 2022, and now receive a very small part pension
-
I am at present applying for a review of the decisions to remove our pensions and the grandfathering of my super, June 2021. So far I have had no response as to whether they have received my request, or if they will agree to undertake this review.
2]
In 2021 the NDIS rang up my niece for a planning meeting to discuss her funding needs, over the phone
- My relative has bipolar which was misdiagnosed for 10 years and she was given the wrong medication all that time.
- She has many other medical issues apart from the bipolar - so that she is extremely malnourished, in intense pain, and living in a country city with no psychiatric help, and no GP that would accept her oversite and care
- Her situation is so intense that she has tried to take her own life a number of times
- 15 minutes into the conversation she realized that this call was a planning meeting
- She should have had a call, setting up a meeting date and time, giving her time to sit down with her support coordinator, to be able to frame what to ask for at the meeting – no call occurred.
- In her situation a face to face meeting could have happened so that the NDIS planner could see for himself, her extreme need.
3]
The planning meeting for my son was unprepared for and only begun to be dealt with many months after the planning meeting
- At the planning meeting for my son in mid-2021, the NDIS planner had not read my submission sent to her for the planning meeting, before coming to the meeting.
- So the whole context of what we were asking for had to be drawn out longhand, and it was very difficult to communicate a lot of formation in a short time – the planner said she would read our submission after the meeting
- The planner said that she would deal with the requests straight away – the next week she went on two months holiday, and nothing was completed and considered for some months after the meeting.
- That is some months after the funding was supposed to have been set pace
- I had to try and contact the NDIS many times to try and work out what was happening – with little response
- There was no opportunity given to respond to the planners decisions concerning my sons final plan before it was put in place
4]
Each year we have been promised that we would have an opportunity to discuss the outcomes of planning meetings before the funding decisions were put in place – but that has never occurred.
- In 2017 my son was diagnosed with major depression and serious catatonia, and then spent 6 months in a mental hospital…
- There has been no opportunity to have any input after the planning meetings and before funding plans decided on by the planner, were put in place