Submission 2761
1
Submission regarding National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026.
DON’T CUT SOCIAL AND COMMUNITY ACCESS SUPPORTS.
My son is 35. I am 70. I have cared for and nurtured my son for half my life. We now exist on the Carers pension and his disability pension.
My son is non-verbal (severe communication disorder) and lives with level 3 Autism, an intellectual disability and movement disorder.
We live in regional NSW where it is extremely difficult to find support workers unless one signs up with a big provider. (then his funding does not extend as far).
I believe the changes presented (and with such secret urgency) are completely contrary to the ideals and purpose of the NDIS.
They move the NDIS from funding my son’s supports based upon HIS individual needs in favour of the politically perceived financial needs of a giant, bureaucratic monolith.
COMMUNITYPARTICIPATIONFUNDINGISTHEBESTTHINGTHENDIS
HASENABLEDFORMYSON. Please don’t take it away.
I am happy to address the committee as to how my son spends his community participation time. His funding does not extend to evenings, weekends or public holidays. To make the most of his funding dollars we use hours between 9.30 and 4.30 a few times on weekdays.
Otherwise, he is at home with me.
He has less time in the community than he had when he was at school.
Itissimplyterrifyingthatthesefundingcutswillapplyevenifitleavesmysonwith
lessfundingthanwhatyouhaveactuallydeterminedtobe‘reasonableand necessary’forhim.
Unintendedconsequences
If you remove/reduce this area of funding you will make my son and others like him disappear from public view. They then become mysterious and feared by ordinary members of their community rather like Beau Radley in to Kill a Mocking Bird.
Being known in one’s community is an important piece of protection against abuse and neglect.
Submission to Senate Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for
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Those living in group houses run by providers will be at the mercy of people, with little or no training, who are just paid to be there. One such said to me “It’seasier workandbettermoneythanthetomatofarmwhereIwasbefore”.
I was a strong supporter of the introduction of the NDIS and imagined it would be like the system foreshadowed by Gough Whitlam in 1972. It could have been but is not.
For me living in NDIS times is like living with the sword of Damocles above my head. Press stories sensationalising or demonising people with disabilities and their carers combine menacingly with continual threats of funding being reduced.
The NDIS has added hours of work to my life, locating, supporting and training his support workers, ensuring invoices are correct and dealing with the myriad of other bits and pieces I am too tired to enumerate. (even though my son’s plan is plan managed)
My life is anxiety ridden enough just caring for my son.
These changes will increase my sorrow and stress. They will decrease my son’s ability and opportunity to live a good and ordinary life.
INTERNAL NDIS PROBLEMS:
Over the years since its introduction, I have watched the NDIS being slowly white anted and mismanaged by fearmongering bureaucrats who have steadfastly followed a punitive economic rationalist philosophy. This has been combined with a siege mentality and a desire to return disability support to the charitable sector.
These people are one source of the problems besetting the NDIS. Power without concrete understanding of the conjoined responsibility is rampant among them and applied whimsically. Their cognitive dissonance is astounding at times.
They resort to intimidatory cold calling. Demands to speak on the phone to non verbal people. Threats to withdraw funding. Demands that adults with lifelong severe disability, often since babyhood, repeatedly prove their disability with new documents! As though they may have recovered and no longer need support!!!
EXTERNAL NDIS PROBLEMS:
There were many people who opposed the introduction of anything like the NDIS but had not the honesty to oppose it openly at the time. Big Disability Service Providers were notably prominent. Afraid that the change would damage their bottom line.
Submission to Senate Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for
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The choice of an insurance model was a free gift to them. It has enabled a philosophy and attitude of ‘cost saving’ rather than ‘cost tailoring’ to prevail.
It has turned the NDIS into BIG $$$$ BUSINESS with no transparency and few mandatory requirements/obligations. Providers don’t even have to be registered to receive NDIS funding.
The press and politicians too, portray people such as my son as a ‘rip off merchant’ or ‘bludger’ misusing money that the good long-suffering taxpayers provide and so ‘ripping off the system’.
These amendments show this sustained opposition is still present and has I fear gained the upper hand. They are politically motivated and fiscally irresponsible knee jerk reactions.
Crazily so many of the changes are based upon rule changes that “have yet to be devised” and even worse hidden in ‘Explanatory Memoranda’.
The changes proposed in this bill are not going to save money they will move costs around a bit maybe to the states and maybe back to the charitable sector but they will not improve the NDIS. They are just another nail in its coffin and some a free ticket to providers to cream more money out of the government.
Every single administration has tinkered and messed with the NDIS these changes are the latest and most destructive.
The NDIS has never been left alone for long enough to see if it really does work. If you really want to save money here are a few ideas:
$ Remove the 7-9 days’ notice period a participant must give providers of absence due to illness. Return it to 24 hours.
The way this little sleight of hand works is as follows:
“Johnny is sick with a cold on Monday morning. Mum rings Service provider that he won’t be in because he is sick. Service provider gets funds for that day’s service (fair enough) and all following 9 days (rip off) unless he returns. If after 9 days he is still unwell the process repeats.”
His funds are not frozen while he is unwell, they are given to the provider without any requirement to prove the use to which they were put.
This has seen providers collect funds for services never provided for many days.
Submission to Senate Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for
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When you have a disability, you simply don’t know 7-9 days in advance if you are going to be ill.
Do any of you know 7-9 days in advance if you are going to be unwell?
$ Establish a system where the NDIS asks participants about service provision its quality and whether it actually happened on the date and times claimed.
Currently NDIS only asks providers. Only the families and participants know whether and when services are provided. I’m happy to provide details of the types of curious and incorrect invoices I have received and refused payment – the NDIS wasn’t interested.
$ People at the ‘pointy end’ of severe disability, diagnosed in early childhood, with lifelong permanent needs notbe continually reviewed, unless they request a review. Centrelink ceased the practice of demanding whether children were “still” disabled years ago.
$ Implement a ban on cold calling participants on Saturdays, Sundays and after 5pm. How much overtime is the NDIS spending! has anyone asked this question?
This practise is intimidatory and disruptive.
$ Allocate a section in NDIS for those with permanent lifelong disabilities which render them non-verbal (the pointy end of disability). Where their families can interact with the NDIS worker face to face. (NOTVIACOMPUTERbut truly face to face); Maintain the same planner/decision maker, who knows their case and whom they know, thus providing continuity and avoiding duplication and the extra cost involved as well as our anxiety.
$ Any bureaucrat with the power to assess or alter funding MUST have a lived experience of disability.
$ Regularly and apart from review decisions ask the users of the services directly (NOT THE PROVIDERS) about the quality, effectiveness, timeliness of their service and the training, experience and behaviour of the worker provided. The only opportunity we have for this feedback is when you propose to cut our funding.
I wish the Committee strength and compassion in the task before them.
I am happy to travel and address the Committee in person should they need any further details.
Submission to Senate Inquiry into National Disability Insurance Scheme Amendment (Securing the NDIS for