Submission 2698
I am a disabled parent of 3 young adults, one of whom has multiple disabilities. I am an NDIS participant and nominee for my daughter who is on the NDIS for a single disability but also has other disability and medical conditions that aren’t included in her NDIS plan. I am a full time carer, and have not worked since my daughter was born. I frequently suffer burnout and extreme levels of stress, my caring role has a huge impact on my ability to manage my own disability, support my partner and other children and participate in regular life.
I am deeply concerned by the changes to the NDIS proposed in the Future Generations Bill, the Explanatory Memorandum and the Integrity and Safeguarding Act. It is not that I fear change, it is a fear of real harm occurring to real people as a result of the changes. I understand the budgetary pressures, but I continually hear from the government about changes being needed to cut fraud and rorting, and these changes do nothing to address this, instead they put all the burden of balancing the budget onto disabled people and their already exhausted carers and parents. If the government really wanted to know how to deal with the fraud and rorting they would ask disabled people. From where we sit the multiple causes of it are clear, but is appears our voices are not wanted and consultation has only been made with big providers.
Please delay this bill and take the time to incorporate the recommendations of the Disability Royal Commission, and take the advice of actual disabled people. Fix the system, don’t just cut the funding and cut disabled people out of it while still allowing those rorting the system to continue.
The reassessment of all participants which the minister has said will result in the removal of a large proportion of current participants is very concerning. Those accepted into the NDIS have undergone diagnostic and functional capacity assessments already to prove they have significant and lifelong disability. These assessments are terribly confronting and traumatising, we should not have to constantly be reassessed. That the government is willing to “grandfather” negative gearing on properties but not access to disability supports by people who have proven their need is worse than dehumanising, it is putting our basic human rights below the needs of investors to make money! Furthermore, the proposed tests are to exclude the persons environment, support and personal circumstances. People don’t exist in vacuums, my disability is highly impacted by my need to care for a disabled young adult and consider her needs. The support she receives is also affected by my disability and my limited capacity. The requirement that people have undergone all treatments for their impairment, without allowing for personal circumstances, waiting lists, etc is also troubling. Treatments should be decided by clinicians based on individual circumstances, not on a list enforced by public servants.
I’m very worried about the removal of the approach of supporting whole people. This legislation will see only needs arising directly out of the funded impairment being supported. How do we decide which aspect of ourselves belong to our impairment? Conditions such as autism have many commonly co-occurring conditions, or physical manifestations of cognitive disability.
This bill also causes me huge concern about the risk of ending up in debt, either to the NDIS or to a provider. If the minister were to cap a support in my plan, or my plan as a whole and I had already signed a service agreement on undergone some therapy or used a support but not claimed yet, I could have insufficient funds available in the plan to service that debt but still be required to pay it out of pocket. Disabled people can’t afford to pay for their own supports, especially not when they thought they had the budget to cover them. This situation can also arise by the clause that allows the plan to be suspended or revoked after “reasonable attempts” to contact the participant or nominee have failed. What are reasonable attempts? What method of contact? Over how long? What if I’m in hospital, I may be uncontactable but my daughter would still require support. What
Submission 2698
happens when we submit the invoices to the NDIS for that support and find the plan is suspended because my phone was off for a few weeks. There is no avenue for emergency plan reassessments either, so if I was incapacitated or worse and my daughter now needed much more intensive support, there is no way to get that funded quickly.
The proposed legislation also have several other mechanisms that are very likely to end in debt for participants, and the really frightening thing is that there doesn’t appear to be any way that the participant can appeal these debts. Firstly, there is currently no means, and none in this legislation for a participant to pre-check spending in a binding way. So even if I’ve called the NDIS enquiries line and asked if I can pay for a particular support with plan funds, if the NDIS decides later that that spending was not allowed I will be issued with a debt. Under this new legislation if the NDIS asks me for a receipt or invoice and I don’t provide it, they will automatically deem the spending as non compliant and raise a debt. Again, no review. What if we’ve had a flood or fire, or family breakdown that destroy or remove access to receipts? We currently upload most receipts or invoices to the app when we claim, that should be accepted as having provided that receipt. The legislation calls for nominees to hold the paperwork for 5 years. Again, we’ve uploaded it to the portal or app, that should be acceptable. All such debts should be automatically reviewed and participants or nominees should be able to ask for it to be excused. Navigators, LACs or NDIS staff should also be able to give binding approval that specified supports are in accordance with the plan and can be purchased.
The shortening of the claim window was a necessity, but shortening it further to 90 days, again without the ability to ask for review or extension, is concerning. Many providers are slow with invoicing, or their invoices contain multiple mistakes (always in their favour!) that need chasing to have corrected, also if a participant or nominee are on holidays, have other pressing commitments or are incapacitated in some way, 3 months is a very short time frame to submit all invoices. Failure to claim within the window will therefore again leave the participant or nominee liable for the debt for supports that are funded in their plan.
Recently I was unable to use my own supports for a period of time due to grieving and supporting my daughter through grief and medical challenges. As a result I now need more therapy appointments to “catch up” and more support to try to return my house to being safe, clean and tidy and reestablish routines. This new legislation would prevent my unused funds rolling into my new plan, so I’d be limited and unable to increase supports to “catch up”. At the moment plans are rolling over most years and not getting reassessed, the new legislation proposes to continue this but to make it much harder to ask for a reassessment. The circumstances for reassessment have to be major unanticipated changes, so how are plans going to change with life stages? This is only OK if there is also an emergency system for reassessments, and if there is a process to apply for minor changes to the plan without reassessment eg. The addition of a seizure alert device if a participant is diagnosed with epilepsy, the change to the therapy types available. It would also be good to broaden the items available to apply for as substitutes for support.
I have no objection to basic admin tasks being undertaken by AI, as long as there is a very strict policy limiting it to that. I have much larger issues with AI being used without human oversight and without humans reviewing all outcomes. To suggest that a human could do a needs assessment, plug the data into an algorithm and a plan gets spat out that will accurately reflect the needs of a particular, individual disabled person is naïve and unrealistic. Currently with OTs comprehensively assessing individuals and NDIS planners making plans there are errors and omissions, that is fixed by better understanding not trying to simplify complex people into algorithmic boxes.
Submission 2698
This legislation is meant to ensure financial sustainability is considered in every support decision, this suggests that disabled people are a burden on society and that burden must be reduced. It suggests that supports must be effective and beneficial as evidenced by peer review, however once again, people are complex, they rarely are the “ideal patient” that is included in peer reviewed science. Lived experience, the knowledge a disabled person has about what works for them, and clinical recommendations must be given a greater weight. While value for money is important, the outcome has to be a major factor in deciding that, for example, some years ago we attended a 10 week group therapy program funded by our private health insurance. Due to our inability to cope with the group dynamics and learn in a loud environment where we were forced to speak in front of the group, we did not achieve the desired outcomes. The program was great value for money as we got 10 sessions for the price of only 3-4 individual sessions, however for us, 5 individual sessions each would have achieved the desired outcomes of the program at a slightly greater cost, I’d consider that better value for money.
Having been a disabled mother parenting both non-disabled and disabled children I think I’m highly qualified to speak about parental responsibility. To suggest that participants needs can be assessed without consideration of their individual circumstances or those of their informal supports shows a severe lack of understanding. Plans must be made giving suitable supports for the whole person and their life situation. My disabled young adult, having had a negative experience with a paid support worker decided to rely instead on an informal support over paid carers. That decision set her up to not be able to leave when the relationship became coercive and abusive, her partner literally had her life in his hands. Currently I am taking the full responsibility while we try to rebuild her trust in people. Please stop underestimating the care parents already provide, it is not parental responsibility to be awake 24/7 monitoring their child’s breathing, it is not parental responsibility to be driving your 24 year old to every appointment, social or sporting commitment and watching them to ensure they are safe then helping them change afterwards. Our other children also need parents and our lives are already taken up advocating for our disabled child with the NDIS, with schools, sports and community clubs and ensuring they have what they need. We’d rather not rely on others to care for our young people, but we can’t physically do everything.
In relation to the recommendations that supports only be funded if there isn’t another system that could provide that support, it is essential to check that the other system is actually capable of providing the support to that disabled individual, and that all disability supports needed for that are funded. Too often another system or program is suggested, but once you look more closely you find it doesn’t actually do what is required, or isn’t able to support someone with disability or can, but requires them to have a support person with them at all times.
Senator McAllister is reported to have called the NDIS a “life changing reform” while saying that the consequences of delaying this new legislation would be significant. The consequences however of not delaying, and rushing to enact such open and damaging legislation that leaves so much open for the Minister to decide later, are also significant, possibly catastrophic, on the lives of people with disability.
Please do not approve this legislation in it’s current form. Please allow time for community input, for assessment of the potential risks and please strongly consider returning to the recommendations of the Royal Commission and reconsider whether this legislation meets those recommendations and addresses the issues the government has claimed need addressing. Thank you.