Submission 1670
To whom it may concern,
My name is and I live in rural Queensland with my two youngest children. I am a disabled person accessing DSP and the NDIS. I have three children with varying levels of disability - the youngest two are NDS clients and I am their carer.
I have a diagnosis of CPTSD and AuDHD category 2. My middle child has AuDHD category 2 and depression. My youngest has AuDHD category 3. Currently both my children are not attending school. As of recently, they are no longer receiving support work either. We live in small country town with no services to access. We have had huge issues with not being able to access services to spend our funds on, and issues with not being able to access most of the funds at all for a prolonged period of time. I am extremely concerned by the proposed bill and do not support it at all.
The proposed reform poses significant risks to the entire disabled community in a number of deeply concerning ways. The possible amendment of “not contactable” rules is concerning as it potenially punishes anyone in crisis such as homelessness, DV accomodation or hospitalisation. Homeless people usually struggle to keep mobile phones charged as they don’t have access to power points on demand. The overall loss of supports and community engagement is devastating as it may affect some clients’ ability to work. At least three disabled people in our town require support staff to be able to work. My youngest is completely excluded from school and social engagement support is the only support he gets full stop. It’s his only chance to leave the house and see people other than his immediate family. His support worker takes him to a venue where he can do a number of activities he can’t do at home - he accesses craft supplies that I could never afford to fund on DSP, he gets to do cooking lessons and he dances to music as a form of exercise. It is the only service we are able to access out here, if the funding is cut he won’t be able to access anything else. Our town is just too small, the services ae all too far and the waiting lists are all far too long. The proposed reform already has many of us looking into voluntary assisted dying, which shows just how distressed and fearful we all are. We’ve been fighting so hard for better access and more consistent support, only to receive this extremely inhumane proposed reform instead.
The eligibilty and assessment changes see more and more people excluded with no sufficient off ramp services to receive them. The idea that automated decision making could ever be approved in the wake of RoboDebt is astounding. Surely we learnt from the lives lost during that unlawful and inhumane scheme? Surely you wouldn’t repeat that same act n the disabled community? The ministerial authority to change or cancel funding should be in extenuating circumstances only. It is extremely inappropriate for such powers to
Submission 1670
be granted to the miinister in such a blanket capacity, especially when the agency allready has no duty of care or legal accountability for hharm caused. Foundational supports and system changes once again harm the disabled community disproportionately by taking away their autonomy and quality of life. All for no real reason, because the amount of rorting within the NDIS is actually far lower than other branches such as medicare or the ATO. No one is looking to shut down or defund them. The LNP and ALP governments willing to harm or even kill us in order to save funds are the very same governments that spent millions of dollars on barristers to represent them in civl court matters against disabled families. Proportionally speaking, most cases are overturned in the families’ favour so this definitely indicates false economising and mismanagement of funds at some level. It also indicates that a lot of NDIS decisions are incorrect and that an impartial outsider is often required to ensure the NDIS complies to their own rules.
I am now writing to ask the government why significant harm or even death are acceptable outcomes to the disabled community. I believe the issue of cost blowouts is absolutely essential to address, but the proposed reform fails to address the most significant factors and will ultimately cause significant harm and loss of life to the disabled community under the current model proposed. Unpaid carers save the economy approximately 80 billion dollars per year. Carers often take significant financial hits when providing care - on average carers lose about $175k worth of super and abput $39 600 in lost earnings across a lifetime. Ocer half of all carers report HIGH - VERY HIGH levels of distress and only 15% report being in good health. On average, mental illness and suicide costs the country about 220 billion per year - this figure relates to the cost of hospitalisation, loss of productivity, etc. It highlights that when communities have high rates of mental health issues with lack of affordable accessible treeatmwents, both the economy and the community suffers. Early intervention, adequate support and prevention of harm is always more cost effective, whereas crisis care and intensive support to restabilise clients is far more expensive and less productive overall. The NDIS needs to acknowledge that the harm inflicted upon clients by administrative systems or funding decisions is one of the biggest factors in the cost blowout equation currently. Funding emergency care for burnt out carers like myself or admitting us to mental health units when we break down is definitely not a sensible practice because many of us are solo parents so the government may end up funding specialist foster care if the children have no other family to take them.
Cost shifting, bed blocking and a complete lack of suitable off ramp services are huge factors that the government continues to ignore. Reform routinely creates further harm to clients, compounding existing conditions and resulting in more intensive expensive treatments to counter the damage. Bed blocking currently costs the country about two billion dollars per year and unless the government
Submission 1670
is willing to address the cost shifting that causes it, significant amounts of money will continue to be wasted in ways like this. Currently the NDS is costing about 52 billion per year to run, and the multiplier effect sees about 2.25 returned for every dollar spent. Cost wise, having the NDIS actually saves or returns money to the economy and helps increase quality of life for disabled people. When considering cost blowouts, the government has failed to address the issue of corporate tax dodgers, who cost the country about thirty to fifty billion dollars per year. Corporate cost shifting cost the country about eleven billion dollars in 2020 alone. In the financial year of 2023-24 the federal government spent $37 million on barristers to represent the NDIS in the civil appeals court. The following year that figure jumped to $80.7 million dollars. That is an eye watering amount of money to waste on legal representation when civil courts don’t require lawyers. Approximately 70-80 percent of cases appealed are overturned in favour of clients and families which again confirms that families are deliberately being prevented from accessing required supports and the government is wasting huge amounts of money trying to obstruct access to services or funds. Carers have been in distress for a very long time now, and we have made that incredibly clear. There is no system currently to diagnose and treat carer burnout or autistic burnout - Ive been battling both types for over a decade and can no longer function consistently. My physical and mental health keep deteriorating and ultimately I cant access regular respite so the government has to pay for my trips to the emergency room instead. This is another classic example of how false economising comes back to bite you later on and ultimately costs the entire country mucg more than preventative care such as respite.
Because the NDIS has no accountability and no duty of care, they are allowed to leave clients in horrific inhumane circumstances for months or years at a time, which compounds harm and often results in clients regressing or becoming significantly more unwell. Once clients are in severe crisis, it is more expensive to treat and stabilise them. The NDIS itself continually destabilizes clients inadvertently instead of helping or supporting them. My psychosocial disability makes it especially difficult to engage with the NDS at all and I am at the point where I feel physically ill if I have to speak to someone from the agency. The government has made a choice not to introduce actual safeguards to protect us from these types of harm, instead the current “safeguards” that exist are just tools to justify rationing costs and the only thing they safe guard is the money. There hve already been deaths due to funding cuts - two young Australians who died when the NDIS decided to cut funding for 24/7 breathing tube monitoring is the first example that springs to mind. A disability service should NEVER cause people to become more disabled or even die. If the government does not IMMEDIATELY address this, you are confirming that youre comfortable harming or potentially killing more people . There’s no other way to interpret it at this point. We need clear answers about why the government sees significant harm or even loss of life as acceptable consequences of these proposed reforms.
Submission 1670
Please do not cause any further harm to the disabled community. I have survived ParentsNext and RoboDebt, I have survived being a state ward, survived harm in institutional care, our family has already been harmed so many times by systems exactly like these and I’m afraid that my physical and mental health can’t cope with much more. Please consult with the disabled community and include them when drafting reform. Our lived experience and insights are valid and valuable - please don’tscapegoat us in this way. There are far better ways to balance the books and we are waiting to help you develop better policies once you start inviting us to the table to participate.
Thank you,