Submission 1125
Re: Proposed 2026 NDIS Amendment Bill must not pass
To whom it may concern,
I am a 50 year old mother of three young autistic adults, all of whom have had NDIS plans since shortly after the program was rolled out in our area. My husband died three years ago, after living with metastatic cancer since our children were small, leaving me as my children’s sole “informal support”. Before unpaid caregiving became my lot in life, I was a medical professional in the field of developmental disability (the irony is not lost on me). Like many women, unpaid caregiving has cost me my career and financial security.
When my twin sons were school-aged, they attended a specialist school. Since leaving school, their NDIS plans have allowed them to attend School Leaver’s Programs. A wonderful team of support workers help them prepare for their daily activities and take them into the community. They help implement strategies from their Behaviour Support Practitioner, to reduce “behaviours of concern” (which sounds innocuous, but which looks like banging holes in doors and windows, threatening to stab themselves or others, and urinating on the floor). Support workers help with personal care skills on the advice of their Occupational Therapist (being unable to wash or groom themselves independently) and calming recommendations from their Psychologists. Their Support Coordinator prepares detailed weekly schedules of transport, personnel, day programs and intermittent overnight respite. These supports have been life-changing and lifesaving.
One of my 20 year old sons has an intellectual disability, in addition to autism and other problems. When he is home, if I do not keep the front door deadbolted and the side gate locked, he will abscond and be found in the middle of the road five blocks away, completely oblivious to traffic. He constantly opens cupboards and drawers and strews household objects all over the floor, and becomes verbally and physically aggressive without warning. He often stays up all night, pacing the house and loudly repeating monologues. He requires constant supervision whenever he is awake.
This is the same young man for whom I have attempted to obtain Supported Independent Living (SIL) funding for 2.5 years- with the response to my fourth attempt opining that he is well suited to the private rental market “with occasional drop-in supports”, and his fifth attempt crankily stating “The NDIS is not a provider of housing solutions”. I still cannot believe that actual human beings reviewed the ample evidence of his needs provided, and came to this conclusion. If this is the quality of decision made by a (presumably trained) human, I can only wonder how much worse things will be if the proposed “Automated Decisionmaking” is introduced. This cannot be allowed to happen.
Submission 1125
I understand that the decision to greatly limit access to SIL funding is a deliberate cost-saving measure. Some disabled people have always had significant care and supervision needs. These needs did not vanish with the closing of institutions. Where are disabled adults like my son supposed to live, and with what supervision? If the NDIS is not designed to help people like him live safely in the community, what is the alternative?
While deciding whether to take my son’s case to the Administrative Review Tribunal (using money I do not have, being an unpaid caregiver), his Support Coordinator and I have cobbled together a schedule of weeknight respites in multiple locations. This is clearly not in his best interests, is not what he himself wants (far from “choice and control”), and on back-of-envelope calculations costs more than appropriate SIL funding would. Surely investing in adequate numbers of skilled, specialized, accountable, HUMAN planners, who are allocated time to actually READ submitted reports, would avoid situations like my son’s. It would certainly save the NDIA great expense in legal representation. Up to 80% of NDIS ART matters are settled in favour of the complainant (evidence of faulty decision-making in the first place, and only the tip of the iceberg of bad decisions). It is obscene that money is so readily available to fight disabled people seeking the supports to which they are entitled, and so scarce when it comes to meeting their modest daily needs. (So readily available too, for nuclear submarines…).
Not only was my son’s plea for SIL support again refused, recently his “Social and Community Participation” funding was cut by $12,000 (again, NDIS policy). Funding for Support Coordination (essential for our circumstances) was halved. Introduction of funding periods has necessitated scrutiny and stretching of every cent to ensure that he is safely supported for as much of the time as funding allows. His life shrinks to match the shrinking funding. People like my son, with visible disabilities, have even been berated for “rorting the system” while simply existing in public - thanks to negative soundbite discourse informed by the RedBridge reports. If the intention was to make disabled people’s lives even smaller, the strategy is succeeding.
My second son is also autistic, with Bipolar 1 disorder with psychosis. He has just come home following almost 5 months as a psychiatric inpatient, after 35 rounds of ECT. While I am beginning the process of collecting supporting evidence for his Supported Independent Living application, I have no faith in a positive outcome. Together, my adult sons require the supervision, “damage control” and hands-on care provision of two active man-sized toddlers. I have been parenting these particular toddlers for almost 21 years now, the last three years on my own, and I’m tired. Their sister is attending university part-time. She is recovering from a life-threatening eating disorder precipitated by stress, and is constantly subjected to her brothers’ verbal and physical aggression
Submission 1125
and occasionally to sexualized behaviours. She is on medication for anxiety. Her support needs are
less obvious, but no less real. On good days, she can function “almost like a normal person” (her own
words). On bad days, she is mute, bedbound and unable to feed herself. She was able to access the
NDIS thanks in part to the nuanced diagnostic report prepared by her psychologist. The proposed
“Strength based needs assessments” to replace reports by medical and allied health professionals
would overlook people like my daughter, with fluctuating or complex needs and communication
difficulties. This cannot be allowed.
Like 43% unpaid caregivers, I am also disabled (rheumatoid arthritis and autoimmune deafness). My
own NDIS application was rejected. The NDIS representative who broke the news told me that “first .applications are usually rejected”, and to try again with additional evidence. At the time, dealing .with so much, I did not feel able to reapply. The NDIS is already difficult to access, with opaque .eligibility requirements and abundant red tape. Only 10% of the one in five Australians with .disabilities are participants. While I heartily support the funding and development of accessible .community disability services for the majority of disabled community members who cannot access .the NDIS, the Bill’s proposal to move existing NDIS participants off the program, to instead use .community supports that do not exist must not be allowed. In addition, I am extremely concerned .by the prospect of the Minister for the NDIS having the power to unilaterally overturn decisions.
Our family is not unique in being complex. In the course of many hundreds of interactions with NDIA .personnel, despite being the sole person responsible for the welfare of three vulnerable NDIS .participants, two of whom have extensive support needs, not one NDIA representative has looked at .my collective responsibilities and acknowledged “Gosh, that’s a lot.” Instead, reasonable and .absolutely necessary supports have been repeatedly denied, and existing supports have been .chipped away. The proposed Bill is the final straw on top of a pile of last straws.
The work of caring for disabled people does not go away simply because less money is allocated to .it. Shifting responsibility for caregiving back on to unpaid caregivers is not actually without cost. The .true cost of the changes proposed in this Bill in lost potential, human misery and avoidable distress .may not be represented on any budget bottom line, but they still matter. They will show up in .suicides and other avoidable deaths, in increased abandonment of disabled people in emergency .departments, and in the vanishing of disabled people from the community spaces where they .belong.
I am pleading on behalf of my disabled children and exhausted caregivers like me.
This Bill Must Not Pass