Submission 1943
Re: National Disability Insurance Scheme (Securing the NDIS for Future Generations) Amendment Bill 2026
I am the NDIS Nominee for my brother, aged 62, who is an NDIS participant. I assist him prepare for and arrange appointments and reports as required and negotiate and review his Service Agreements. I track spending and approve invoices and am the point of contact for all his service providers.
Up until the age of 54 years he had never received any disability support services, and only began to receive the Disability Support Pension (DSP) in his late 20s.
When he entered the NDIS our family updated our understanding of his intellectual disability. His IQ and functional capacity have been very well tested, observed, reported and confirmed by a Psychologist and two Occupational Therapists over the last 2-6 years. His intellectual disability is permanent. The NDIS has this evidence and there should be no need to re-establish this permanence by introducing the concept of (or asking about) ‘all appropriate treatment’ OR require consideration of the participants eligibility for all other service systems when determining access to the NDIS. If these services had existed in rural and regional Australia, and been appropriate, we would have tried them! For example, in 2023, we tried for some employment support through the Disability Employment Services (DES) system. It was a failure, and I would expand on this if they were terms of reference here. Suffice to say, the failure of the DES model for over 25 years is obvious by the abysmal employment rate for people with disability.
I also challenge the NDIS to directly relate (or match) his support needs to his eligible impairments alone. Surely his individual circumstances must also be considered. For example, since our father died in 2022, he lives alone. Although his family and friends provide a lot of informal (or free) support, he cannot continue to live independently without the support the NDIS provides, and the NDIS funded support to stay connected and contribute to his local community. One size or impairment does not fit all!
The legislation proposes to also review the framework for assessing reasonable and necessary supports and update principles applying to participants and their plans.
Submission 1943
What does this mean? Isn’t it reasonable and necessary that my brother continue to be supported to remain living independently and participate in his local community with support from the NDIS? He has similar goals and expectations of his life to those of his siblings. Isn’t that reasonable?
The Minister has determined that they will reduce the level of funding for some activities and has recently announced a cut of 50% of all participant’s social community and civic participation supports. This seems such an arbitrary cash grab without due consideration of the consequences. When people with disabilities have 50% fewer opportunities to meet with friends, keep appointments, fill prescriptions, go to a movie or lunch date, who will track the harm to their self esteem and mental ill health and who will care about the increased isolation and loneliness they experience? My brother already visits the Emergency department of the small hospital in his home town too often. It is a safe place for him to go when he is worried and lonely, has feelings he can’t understand and thinks the staff will help. The more unstructured time he has it is likely he will turn to the local health services for support. This is hardly a cost saving, rather cost shifting.
The legislation also proposes to limit unscheduled plan reassessments. When circumstances change, most times this is unscheduled! I fear for what this will mean for participants. My experience of requesting a plan reassessment within the current legislation with a legal change of circumstance (death of primary carer) resulted in a 10 month wait (for a 12 month plan). Because of my advocacy/actions, calling the NDIA monthly, writing to the then Minister, twice, including my brother’s local MP, I finally got a call to consider a reassessment. All the evidence I had submitted supporting a change of circumstance reassessment was misplaced by the Agency. When it was found, none of it was read thoroughly, and only after I pointed out relevant parts, was there some relevant conversation and understanding. The Agency representative, based in a capital city, did not understand the nuances of living in regional and rural Australia, and the implications for his support needs. The Agency seems extremely time poor when undertaking these critical reassessments which does not lead to good outcomes. My point is, staffing is inadequate to deal with the work required if the Agency is to deliver the Scheme it promised!
Submission 1943
I do not have any issue with the NDIS expanding power to identify, investigate and respond to fraud. I do however take issue with this being the main narrative of this Government making out that participants are the villains! The community has been quick to repeat this narrative and the threats to and future insecurity of people with disability and the NDIS is real. The NDIS has lost the broad community support it had when first legislated as the most significant piece of social policy reform since Medicare. People with disabilities are once again being vilified and used as a scapegoat for failing Federal budgets.
Successive Governments’ failure to invest in and ensure an adequate quality and safeguard taskforce is unforgivable! The rushed planning and bureaucratic inefficiencies have caused many of the problems this legislation is attempting to fix.
The NDIS changed my brother’s life for the better. It has given him confidence and the ability to live independently and join in activities in his community. The NDIS has ensured he has a regular life. He is supported to be a volunteer and has been able to develop and maintain friendships and relationships in his wider community. He is an employer in his local community of specialist services and service providers. He is supported to lead an independent and meaningful life, one which we had never envisaged before the NDIS.
Although I do not understand all of the proposed changes in this current legislation, I see enough to make me very concerned for my brother’s future.
More consultation and time to understand the effects of the proposed changes. More time for the Government to consider alternative ways to balance the budget!