ATT: THE COMMITTEE SECRETARIAT COMMUNITY AFFAIRS SENATE AND THE SENIOR CLERK.
COMMITTEE SENATE
We need changes to the NDIS, we need it fixed desperately; however, the proposed bills are not the change we need. These proposed Bill changes are only going to highlight the already massively growing issues and make it worse instead of better. We ask that these changes are taken back to the drawing room and be rewritten with the acknowledgement and help from those of us who live with the nightmare on a daily basis. Those of us affected know all too well the existing badly written, organised, and implemented system. Allow us, the real people, being Carers and Family members effected, to have a voice for change and be the voice of change, not some pen welding government department who has never been affected by nor been part of the NDIS”. Please allow us to be heard.
As a carer and stay at home mum for the last 20 years I and my husband have witnessed the before , during and after of the NDIS and let me just say it has been a complete nightmare on all fronts for our two youngest children. We have endured painfully, the last 12 years being victim to the not so good points of eligibility criteria for the NDIS and all its pitfalls and downfalls. Due to both children having Autism, emotional and behavioural meltdowns, and related learning difficulties their entire lives they have never fitted the boxes to meet all necessary criteria to receive the NDIS until 12 months ago when we were forced to use our entire savings to have them re assessed once again and reapply for it. All expenses have been at our own cost with nothing ever being re imbursed. So yes, the laws need to be changed governing NDIS, and it needs to be fixed to be more inclusive and accepting of so-called industry “LABELING” which in itself is discriminating, isolating, and victimising for all.
If the proposed changes were to be passed it would put my family back at the very beginning again and once again would not receive any NDIS as once again, they do not meet the criteria even though they are both on the disability pension and aren’t capable of maintaining a job. When the NDIS was introduced, my children were cut off completely from all services which they badly needed and had access to via our private health insurance. All services culled those who didn’t meet the criteria for NDIS, and we were abandoned and forced beyond our will to fend for ourselves. Then the next battles came with the education department and the medical boards. The kids funding was cut from the schools they attended, and they lost all of the school supports and personnel who were employed to help them in the education and medical areas.
Now they have reached maturity and age independence we fear with these requested changes they are going to be forced to move back in with us and we are going to be their carers once more. This is not fair to anyone of us, and we have struggled, worked our buts off and gone without all wants and luxuries most families take for granted just to survive on one income with my husband providing for all of us. I say this because not only will they lose the NDIS as they won’t fit the desired mandated categories, but they will also loose the pensions as it directly affects the Centrelink wording and classification as well. It is a domino effect. This is disastrous for all of us.
We as a family are sick and tired literally of being the innocent victims of wrongdoing by the government and the society as a whole. We are fed up with the abuse we receive on a daily basis and the look of body language scorn projected at us as we are passed in the street and the false perception reflected back at us in the town in which we live. For some unknown reason why does Society, the Government, and all Political, Medical, and Business fronts think that Autism magically fixes itself and goes away as our children get older. (permanence of
disability) For us it gets worse as they get older, opportunity to grow and achieve is thoughted by those who don’t understand and feel threatened by somebody more intelligent than them even though they only see somebody who is mute and doesn’t give eye contact when society demands.
Thus, the greatest need of all. Do not implement and pass these new Bills as they currently are presented. They too need to be modified and adapted to reality. They are not the fix; they are only going to highlight more inadequacies and make the already “bad” worse.
My/ our two children rely heavily on the social supports they receive due to the mental health side effects of their ASD2 challenges. If it wasn’t for these supports, they would revert back to where they were 6 months ago and that is in their room all day refusing to talk to anyone, not even to their friends on the phone and were completely shut off and isolated to the whole world. They had lost all of their confidence and structure and routine that they had when attending education facilities and they were nobody. If it hadn’t been for being able to access a local Behavioural Therapist in our small country town my two kids would still be in their bedrooms today. Unfortunately, one is, due to losing 90% of her funding in April this year as a result of a change of circumstance lodged to acquire more funding in one section being “Capacity Building” and taking it off other areas which she did not need. NDIA also tried their hardest in demanding she be reassessed even though she has and always will have ASD2 with mental health issues getting worse.
So once again she has lost her supports, we are back to privately funding and providing for her as she now is on a long waiting list to see a specialised psychologist who is trained in mental health issues for women on the spectrum. Also to top it off with the final nail being put into the coffin, her change of circumstance request was denied indefinitely by NDIS being Capacity Building and Behavioural Therapy Supports. My daughter is now a zombie locked in her room once more and now has related eating issues, social anxiety, and emotional and behavioural regulation meltdowns on a grand scale just like she had when she was younger but only worse and more magnified and detrimental. We are scared we are going to lose her. All thanks to NDIS.
Permanence in Relation to disability and accessing unaffordable and unavailable supports and services in our small rural community
Accessing treatments and supports under the current legislation is very hard in rural smalltown communities. A lot of the organisations we do have charge over the top exaggerated blown out figures for the support they supposedly provide and abuse the current NDIS Schedule in their favour. We are told time and time again when we complain or ask for a review that if we don’t like it or accept their Schedule/contract find somebody else. I personally have reported many local companies for abuse of power and fraud by deception to the NDIS Commission for immediate inquiries. I have also accessed legal aid and the legal department of the NDIA, but to no avail. It is all too hard for everyone. Worst of all it is downright abusive and discriminating to my children and us as carers. The general consensus across the board is “Why do you care, it’s not your money, it’s the government’s, pay what we charge or find someone else or go without” So, so wrong. We as taxpayers are footing this waste of money being abused by those in the wrong and those of us that need everything we can access lose out and suffer. Again “Innocent Victims of Crime, Discrimination and a Massive Abuse of Authority and Dictatorship”.
Please help us by implementing the right changes, not the ones you think will benefit those already falsely abusing the already corrupted system that we are all forced by dictatorship to abide by.
Let us have our voice and let us use our voice, do not deny us of our rights and our dignity. Abuse should not be dished out, and nobody should be forced to tolerate it. It is un Australian and we ourselves are very much proud contributing Australians in our own way. We matter; we care just like everyone else. The time has come to Drop the Tokenistic and Sarcasm Approaches.