Committee Secretary
Community Affairs Legislation Committee
Department of the Senate
PO Box 6100
Parliament House
CANBERRA ACT 2600
AUSTRALIA
seniorclerk.committees.sen@aph.gov.au
RE NATIONAL DISABILITY INSURANCE SCHEME (Securing the NDIS for Future
Generations) BILL 2026
Amends the: National Disability Insurance Scheme Act 2013 in relation to the National Disability Insurance Scheme (NDIS) to: define ‘functional capacity’; limit unscheduled plan reassessments; clarify the requirement for support needs to be directly related to a participant’s eligible impairments; enable the Minister to reduce funding for specified groups of supports; introduce plan end dates and renewal processes; refine the framework for assessing ‘reasonable and necessary’ supports and update principles applying to participants and their plans; clarify the definition of permanence by introducing the concept of ‘all appropriate treatment’; require consideration of a participant’s eligibility for other service systems when determining access to the NDIS; expand the National Disability Insurance Agency’s powers to identify, investigate and respond to fraud and non-compliance and to ensure the integrity of the NDIS; amend governance arrangements relating to pricing decisions, indexation of old framework plans and the automation of administrative actions; and provide for transitional arrangements; Crimes Act 1914 to make a consequential amendment; and National Disability Insurance Scheme Act 2013 and National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Act 2024 to support the implementation of new framework planning arrangements
To Whom it may concern,
I live with my 40 year old son (who has multiple physical disabilities, cognitive impairment, intellectual disability, is incontinent) who has relied on myself and his father (now deceased) for all his personal care, mobility needs, meal preparation, mealtime assistance, transportation, access to school, access to church, access to anything for the past 40 years i.e. since birth. I manage his meagre social security income, make sure his debit card has accessible funds and ensure his bills are paid. I laugh and cry with him, and celebrate the smallest of achievements like weightbearing to the count of 10 at age 40, still being able to weight bear means that sometimes he might be able to stand for a transfer from his
wheelchair rather than be hoist assisted for his continence needs, his therapy, his podiatry appointments, his every mobility adjustment. His passion is music, people, Bunnings and loud noisey drills. He does not have a job and does not understand why volunteers do not get paid, even if they only volunteer one day a year, like him, but will focus the other 364 days on repeating that question about the one event that brings him a sense of worth and joy. He is a strong self-advocate. He can only live a meaningful life with appropriately funded disability supports and what I now contribute without his father’s enduring love and assistance. Do not cut any percentage of social and community participation – he can not live a meaningful life without what he has now let alone if it is cut.
His 3 brothers and one sister are adults and have moved interstate, rurally or to live independent lives with their own partners and families (I have 2 little grandchildren. ) They all work full time or part time and some study. I am here every night and every morning when he wakes. I cannot retire or take advantage of my long service leave or go on any holiday that might be longer than 10 days like my siblings or in-laws do. I have to be here because there is no funding for me to live my life independent of my son.
I still work part time and have seen many iterations of disability support over his lifetime, including deinstitutionalisation, dismantling of State disability systems due to the introduction of the much wanted and needed National Disability Insurance Scheme, the lobbying for, and introduction of, Changing Places so my son had a place of where his dignity and human rights in relation to public toilet access were introduced in Australia. I have stood shoulder to shoulder with people with disability and their families when seeking the abolition of the introduction of Independent Assessments some short years ago. There was no, one valid functional assessment tool then and there isn’t now, that validates the assessment can be fundamentally, accurately and rigourously linked to all environments experienced by the participant and sustains his family capacity to continue their care relationship. No mumbo jumbo about increasing parental responsibility, you can’t increase what is at maximum capacity, but actual additional targeted meaningful funding is required for ageing parents to live their own lives while still caring for their son or daughter who has complex, lifelong, permanent disabilities.
In short I am no stranger the pain and gain from change to disability supports in relation to my son and the impacts that they have on him and on our family in relation to having choices and inclusion become a reality. I have cared for my husband who became an NDIS participant and have fought long, hard and loud with multiple systems to ensure that both he and my son had their human rights upheld and their right to live meaningful lives upheld.
I have been scared, angry, confused and frustrated but never have I felt this visceral fear that has enveloped me with the proposed introduction of the above Amendment legislation to the NDIS and provide my personal observations/submission based on my life, lived experience as the mother and spouse of 2 very different NDIS participants.
Not enough time to provide a submission – Extend the date for Submissions.
This Senate Enquiry should be extended for at least another two weeks to allow participants to actually participate and lodge submissions. My son requires even more time than that to allow him to understand the ramifications of the proposed changes and then to make a comment in a video or voice recording as he does not read and cannot write.
Right to Appeal Assessment Decisions
Proposed changes to introduce a support needs assessment where a computer generates a participant’s plan budget based on the assessment response without the right to appeal this plan budget outcome should be stopped. Diminishing any power the Administrative Review Tribunal (ART) has to override plan decisions and budgets should never be considered. This is human involvement about humans. Simply giving a participant a right to have another assessment, where the outcome could be the same based on “back of house”, not publically available, non-transparent computer algorithms which are untried, unfit for purpose and do not appear to have any precedent in matching actual disability support needs and to a realistic person-centred, goal oriented, rights-based aspirational outcomes is unfair and inhumane.
The right to appeal whether the plan budget will meet the disability needs of the participant must remain a focus and part of the Act. We can not have a “computer says no” situation when real people’s lives are at stake. Which they are.
Minister Butler said in his second reading of the proposed Bill:
“Further work is needed to identify the appropriate threshold of functional capacity for the NDIS context, and the bill provides the basis for that future work. The Australian government will establish a technical advisory group to provide expert advice on an appropriate threshold and assessments for substantially reduced functional capacity—informed, obviously, by consultation with the community and states and territories.”
Ref: https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22chamber %2Fhansardr%2F29156%2F0021%22
I SAY :
Do not make any changes OR additions in relation to functional capacity assessments or support needs assessments until this work can be validated as fair and reasonable or fit for purpose to meet the disability support needs of someone like my son who is totally reliant on others from the moment he wakes up to the moment he goes to sleep, if he goes to sleep, and his safety in between those hours. . By the way you cannot separate what need he has and when he needs it therefore no plan should be arbitrarily reduced by any person in government with the proposed power in the amendment to do so, without any consultation with him or his family about the impacts this will have on him or us (for example the proposed sweeping decision to reduce a participant’s social and community participation in their plan by any percentage% in the guise of keeping the scheme sustainable for the future. Whilst this might “fix a budget hole” or deficit it does not relate
to individual people except to penalise them. Unintended consequences, if proposed changes continue might be that more and more people with profound disabilities like my son might be “forced” to live in Specialist Disability Accommodation, at more expense to the Government, as families would not be able to increase what the currently contribute to their adult children’s lives.
He said
Currently we don’t have adequate controls to effectively target and tighten the funding of supports for old framework plans. This has resulted in the scheme growing too fast.
I SAY
Minister how do you propose to schedule when, where, how and by whom his disability supports will be delivered? How do you schedule when to wipe someone’s nose after a sneeze, keep them dry from the rain, purchase and assist them to eat a pie at the footy, or provide intimate personal care needs at the same match. You can’t because life isn’t scheduled that way. Do not blame or penalise participants for budget overspends.
The Minister went on to say:
“This bill will also limit unscheduled plan reassessments.”
Unscheduled plan reassessments are a key driver of spending growth, and the agency has not been able to reduce the number of plans undergoing an unscheduled reassessment.
One in five plans are currently subject to an unscheduled reassessment every year. And the average result of these reassessments is a 20 per cent increase in plan value.”
https://parlinfo.aph.gov.au/parlInfo/search/display/display.w3p;query=Id%3A%22cha mber%2Fhansardr%2F29156%2F0021%22
You know what life is like that for us – unscheduled increased needs happen. We need to continue to accommodate these and participants and their families should have access to advocacy support to do so. I know a number of people, who were nominees, who appealed plan outcomes where their participants experienced significant reductions in plan values, who took the decisions to the ART. These were appeals based on the results of scheduled plan reassessments but where needs had increased and yet plans were diminised. Errors occur regularly with the NDIS whether they are for planned or unscheduled reassessments. Whilst the Minister does not state the actual figures of how many were lodged without the participant or nominee knowledge I would suggest that many were lodged by nominees or participants. And that the plan increases were absolutely warranted. We need to continue to have this right of unscheduled plan reassessment in place, to be supported to dos and for it to be a reviewable decision to be appealed at the ART if necessary.
I refer to: Clarify the requirement for support needs to be directly related to a participant’s eligible impairments- To me this means seeing the person as a whole not just a person with an “eligible impairment”. Holistic assessment by relevant allied health
professionals, neurologists, endocrinologists and other relevant professionals who know my son well and how his “impairments” influence his capacity to manage in various situations. This is critical and should not be discarded for an assessment tool that is not transparent and whose purpose we fear is about shifting costs to other systems or non existent ongoing “community supports”. The NDIS should rigorously support him and to obtain every bit of evidence it needs to demonstrate all his “eligible impairments.”
I refer to: Refine the framework for assessing ‘reasonable and necessary’ supports and update principles applying to participants and their plans.
Do not do this without understanding the context of “reasonable and necessary supports” as being those fought for for by disabled people to live meaningful and contributing lives. Do not link “reasonable and necessary” to limitingplan budgets to meet fiscal responsibilities of keeping the scheme sustainable. Do not blame disabled people for wanting to live an ordinary life with ordinary goals WITH the supports to do so, relevant for the person equipment and modifications that make their homes and transport accessible. This is the context of “reasonable and necessary” not what is being proposed. Support my son and other people with significant disabilities to live their lives the way you live your life – with spontaneity, with joy and hope that they are contributing to their community as you do. Do not destroy the essence of the National Disability Insurance Scheme but regroup and focus on it’s truest intention for people with disabilities to be supported with reasonable and necessary supports to aim for their goals in life.
I have run out of time to submit more but will leave you with these thoughts and am available in any way to provide more detail as needed or requested.,
Kind regards,