Dear Senators,
I am writing to share my CONCERN regarding Minister Butler’s NDIS REFORMS
It will take disability back to where I started 20 years ago
BACKGROUND
Below is my disability journey and how similar agencies will have similar reforms blocking me from all government supports having a disastrous impact on my life 꾇blocked from any supports 20 years ago 꾇10 years ago I became housebound 10 years ago Led to me becoming bedbound 꾇 Siloed except to see my -GP once every 3-6 months
- specialist once a year 꾇DSP access took 17 years only through help of advocates 꾇 NDIS 10 years Failed access 꾇SAHM Aged care access 2years through help of state aged care and health department 꾇automatically Booted off aged care reforms similar to proposed NDIS reforms 꾇 accessed NDIS through ART
- Who can access the NDIS Despite my disabilties being profound and Significant I was unable to gain access to any state or federal suppers -DSP Aged Care & NDIS.
My listed disabilties are all list C other.
SAHM
only supported my age related supports . Not NDIS only my disabilties.
NDIS and NDIS Ican
do not support / won’t support my listed disabilties it focuses on mostly physical disabilties . All these years my assessors and planners don’t understand neurological other and medical disabilities and often confuse it with health and wellbeing supports .
NDIS Ican
Like MAC the assessor no longer need to understand neurological other or “medical” disabilties .
You won’t need diagnosis for physical impairiments
But you will need diagnosis if you need your neurological other impairments support or if they are medical impairements .
It took me over $150 000 and 10 years to prove NDIS criteria for permenence and allied health having profound and significant disabilities
I was unable to complete my own NDIS applications even though I understood how to.
Like aged care , at the beginning of NDIS and with kids , LAC or NDIA completed your application but with my disabilties you would only get help to access a list A or mental health disability .
NDIS system is intentionally too complicated for someone like a professional even with post graduate studies. Doesn’t mean I didn’t know what needed to be done .
- What supports can be funded My SAHM level 4 (maximum funding package even adjusted to current) was similarly funded to NDIS - INADEQUATE.
None of the old or new systems work .
Just all talk and politics by policy writers who have no lived experience .
20 years on I still don’t have a wheelchair. I haven’t been supported to go back to work, study,volunteer, spend time with my family, be supported as a parent to attend my medical appointment, tests and treatment. I haven’t seen my own family for over a decade and my personal relationships & friendships have broken down and no longer exist . I deserve a meaningful life not to be supported just wait around in bed to die.
Package allocation -SAHM Ican restricted to Max 4 levels (level 2 to 5 ), care manager restricts allocation based on profits ,
- NDIS bass on typical support package and body of your evidence , basically a lottery if your planner understands your disability or read 20 decades of your reports . This is why they’re culling down to one primary and listed impairents will be very similar for majority of participants .
SAHM Auto assesment
Interview hours in length designed for family members and carers not profoundly disabled , I’ve never been able to complete any government agency interviews due to my disability my chsp provider completed my interview, I had to redo this interview multiple times as there’s only set number of places available , no human knew what was going on or how MAC works , Everytime you escalated they redid your Ican assessment, If you weren’t notified the system would boot you off and you had to redo the assessment, If you didn’t find a provider in time you would be booted off and have to redo the assessment , If your provider closed down or you changed provider and Centrelink transfer didn’t happen on time you would be booted off the system and have to redo the assesment , If you needed to go up a level you had to redo the assessment, If you’re on the highest level there is no other level you can apply for .
NDIS Ican
I was involved in the Ican trials were worse than SAHM -like going for Centrelink DSP interviews medico legal and AAT/ART IMEs
SAHM care manager restricts allocation based on profits ,
- NDIS bass on typical support package and body of your evidence , lottery if your planner understands your disability or read your reports. -NDIS Ican reforms will be like SAHM whether your disability allows you to complete questions and interview, advocates have been defunded
SAHM was least complicated but less supports more about “care “ services which is where NDIS reforms is heading
Support workers
-
bulk of both plan both schemes . Meal prep and delivery gardening maintenance cleaner
-
SAHM automatic -NDIS burden of evidence
Low risk AT
High risk AT
- both required burden of evidence from Allied health
Transport
- SAHM automatic but mine restricted to no social community or family outings -ndis
Respite
-SAHM aged care restricted aged care facility only I was under 65
- NDIS none
- THE DEFINITION OF PERMANENT DISABILITY
CURRENTLY
To access the NDIS, a person must have a disability the NDIA considers “permanent.”
Currently the NDIA generally considers a disability permanent if:
The person will likely need support for life, and
There are no appropriate treatments available that could remedy the disability.
IMPORTANTLY
Treatments must actually be accessible to the person
I have 5 listed disabilities that are list C other . I was forced over to pace and my planner dropped some of my listed disabilties .
Over 20 years I spent over 150k seeing doctors specialists , allied health, getting treated , being investigated, being gaslighted , being forced to try new unaffordable treatments not subsidised by pbs , tests, and investigations that were harmful.
I’ve had all my disabilities since I was young .
Have proved over 20 years to meet the current definition of permenence.
Now I will need to reprove permenence.
I won’t have funds or health to do so after ART my health took a turn for the worse and I’ve been unsupported for 20 years to re prove :
New definition “Remedy” means remove the impacts of disability, not just reduce symptoms.
This new definition of Remedy will allow me to be removed and I’ll be set back 20 years .
Also it’s just not just your diagnosis it’s also covers remedy of your impairiments .
When will the reassessments stop?
To be reassessed every year when you’ve already proved after 20 years and accessed to the scheme at ART proving you are fully treated and diagnosed .
Like in the past and like DSP I had to continually reprove experimental non PBS ie every “new “ treatment someone concocts up every year also doesn’t remove or reduce impacts of my disability .
THEY’VE BASICALLY HAD THIS VERY SAME DEFINITION FOR MY ACCESS. IT WILL BE
NO DIFFERENT TO WHAT I HAD TO EXPERIENCE OVER PAST DECADE .
- THE DEFINITION OF PERMANENT DISABILITY
WHAT THE BILL CHANGES
A treatment could be used as a reason to deny NDIS access even if it is financially or geographically out of reach. The definition of “appropriate treatment” would also expand to include treatments that:
Improve symptoms, or
Reduce negative impacts of disability. Even if they do not “cure” the disability.
THE IMPACT
A person with a lifelong disability could be denied ND’S access if treatment is considered to reduce some impacts of their disability… even if that treatment isn’t geographically or financially available to them
When I’m reassessed this would remove me from the scheme at any time this definition can go on until I’m over 65 or I die if old age.
Like in the past and like DSP I had to continually reprove experimental non PBS ie every “new “ treatment someone concocts up every year also doesn’t remove or reduce impacts of my disability .
THEY’VE BASICALLY HAD THIS VERY SAME DEFINITION FOR MY ACCESS. IT WILL BE
NO DIFFERENT TO WHAT I HAD TO EXPERIENCE OVER PAST DECADE .
5a. FUNCTIONAL CAPACITY
CURRENTLY
To access the NDIS, a person must be deemed to have “substantially reduced functional capacity” because of their disability.
Right now, “functional capacity” is not formally defined in the NDIS Act.
WHAT THE BILL CHANGES
This Bill would add a formal definition of “functional capacity.” It would also allow governments to create standardised assessment tools that help determine who can access the Scheme.
&
5b. FUNCTIONAL CAPACITY
THE IMPACT
New participants would need to meet:
The new functional capacity criteria, and
The new definition of permanence.
Existing participants would then be reassessed over 3 years. These changes will begin from:
1 January 2028.
At ART all my listed disabilities met significant reduced functional capacity as defined by the NDIS guidelines .
As mentioned previously i would not pass the Ican assessment as it does not take in to account my neuro other medical disabilities unless they change the assessments .
The other concerns are this relates to impairments which must also meet SRFC as well and the disability minister can change these definitions at any time .
Its obvious the policy writers and ministers don’t understand disabilties and changing
the criteria to BLOCK PEOPLE FROM ACCESSING & STAYING ON THE SCHEME
ESPECIALLY PEOPLE WITH MEDICAL DISABILTIES .
They want people to stop trying and just languish at home bed ridden until we die .
When does all this insurance bureaucracy & red tape stop ?
Existing participants should all be GRANDFATHERED
- MINISTERIAL POWERS TO CUT SUPPORT FUNDING
CURRENTLY
NDIS funding is usually determined based on an individual person’s needs.
WHAT THE BILL CHANGES
Gives the Minister power to cut funding to entire categories across the Scheme.
THE IMPACT
Everyone receiving social community participation support could have their funding cut by 50% (or whatever percentage the Minister decides), without any consideration of individual circumstances. This is cruel . Surely this breached human rights . These are MAC care policies. I still don’t have a wheelchair . I need to see my doctors and specialists . I need regular testament tests and investigations. I can’t see my family . I can’t watch drop them if or pick them up at school. I can’t go to school events, sports events. I can’t develop any new friendships or relationships . I haven’t been able to go back to work, study, or volunteer. State and federal supports have not supported me in any if the above . If this is slashed by half and then slashed by whatever they want it will be like I was in aged care or before when I had no support at all and no informal supports .
My plan was moved to PACE according and my therapy was slashed to once a month by a junior planner who removed 3 of my disabilities . This leaves me bed bound and extreme risk . No amount of SW will help me and is the equivalent of aged care where I’m left in bed.
Even NDIA staff did not agree and escalated this internally .
I’ll be back at ART again . This will be my 25th year at Tribunal . Each ART case costs about 150 to 300k a year with top NDIA external lawyers, barristers, Kings counsel , NDIA case manager , ART member, and just little disabled me .
You visit alot of 3rd world countries and you do not see any disabled people out in the streets . This will be what Australia social culture will become .
- PLAN REASSESSMENTS & SUSPENSIONS
CURRENTLY
Participants can request reassessments if their plan does not meet their needs.
WHAT THE BILL CHANGES
The Bill would: Limit when participants can request unscheduled plan reassessments
Allow plans to be suspended if a participant is considered “not contactable”
The term “not contactable” is not defined in the Bill.
THE IMPACT
If a plan is suspended for 90+ days due to no contact, a participant could lose NDIS access entirely.
This is the most inhumane policy . Its exactly like MAC policy and saw me removed from SAHM.
Again left with no support isolated in my bed watching the ceiling all day, no food, no contact with the world .
There was no recourse, internal or external appeal process
This is exactly what this reform intends and I implore everyone to stop this .
I communicate by AAC email and SMS . So if they can’t “speak” to me will they drop me ? No matter how it’s flagged on my records they still call me. They called me on Christmas to accuse me of misleading my plan so they could push me over to PACE I’m preparation for these new policies.
SAHM is brutal NDIS reforms will be worse .
9.FAMILY SUPPORT FOR CHILDREN
CURRENTLY
The NDIS has a guiding principle that parents are responsible for providing substantial care and support for their children. But no legislated rules about when support will and won’t be provided.
WHAT THE BILL CHANGES
NDIS support will no longer be provided to a child, if that support is seen to:
Reduce the time it takes for a parent to look after their child below “what is reasonably expected of a parent”
Improve “household efficiency,” or
Support a child in ways the NDIA views as a parent’s responsibility instead of an NDIS support.
This could still happen even when a parent is disabled themselves, is on the NDIS, or is unable to provide the disability-related support their child needs.
Its pretty low when Australia supports normal families but refuses to support disabled parents to support their family . Instead NDIA will report many families to Child protection to offload costs and responsibility.
I’m sure other carers will be far more effective in communicating this . Carers should receive superannuation and life time health and dental care .
Live a mile in our shoes most disabled families don’t have informal supports .
You never know if this will be you tomorrow .
- FRAUD I cannot believe that NDIS considers everything even human error as FRAUD until it’s proven to be not and they are wanting permission for AFP to access our bank accounts so they don’t need to do this manually . Fraud is intent . Human error and genuine errors by disabled people are not fraud . Its policy makers trying to control disabled people and the greater community .
Definition of FRAUD needs to be defined so it’s just not integrity and we will end up in a ROBO NDIS situation. NDIA should not be allowed to access our bank account details automatically and have more rights than the AFP
DISABLED PEOPLE DESERVE TO LIVE THEIR BEST LIFE . A MEANINGFUL & FULFILLING LIFE WITH DIGNITY OF RISK . SOCIAL & CULTURAL ENGAGEMENT. CHOICE AND CONTROL .