Submission regarding the National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026 Submission 1912 I, Monica Arnold am writing in response to the National Disability Insurance Scheme Amendment (“Securing the NDεS or Future Generations”) Bill 2026 to share our family’s lived experience accessing the NDIS and express deep concern about its direction. While my personal experience relates primarily early-intervention supports young child with disability complex-medical needs this affects all people with disabilities scale nature proposed changes deeply alarming reflect significant shift away original principles: individualised support dignity inclusion participation choice control understand importance ensuring long-term sustainability however I concerned discussions around future-sustainability increasingly being used justify reducing access supports increasing barriers entry shifting responsibility back onto disabled families unpaid carers framing securing ndis-future-generations should not come expense current generation of people-with-disability need now In when first applied ndis family had already discharged public allied health services because told was most appropriate pathway support However as soon entered application process no longer eligible many state-funded services left us limbo were told critical development yet certainty would even accepted onto ndis what might be available approved During period paid thousands dollars out pocket intensive weekly therapies alternative delaying intervention crucial developmental window At time documented typical day looked like part evidence On a without any medical or therapy appointments more than 17 hours spent on direct care tasks alone This included:• tube feeding multiple times per day,• preparing sterilising equipment• managing vomiting episodes

• administering medications,
• supporting oral feeding attempts,
• completing therapy exercises at home,
• and constant monitoring and supervision.

That did not include appointments, travel, administration, advocacy, or care coordination.

Our lives revolved entirely around care. Feeding alone took hours each day. Therapy was not something that happened once a week in a clinic — it became something we were responsible for continuing throughout every part of daily life.

At the same time, I was experiencing significant postnatal anxiety and isolation, with very limited support available for families navigating these circumstances.

Even applying for the NDIS required thousands of dollars more in specialist reports and assessments.

We feel incredibly fortunate that our daughter was ultimately approved for the NDIS and able to access early supports at a time when intervention can have the greatest impact. Those supports have made a meaningful difference to her development, participation, communication regulation, and quality of life.

That is why this Bill matters so much.

The impacts of disability extend far beyond therapy sessions or medical appointments They affect a family’s ability to participate in work education community life society as whole Our daughter was initially not accepted into any childcare services due to her additional needs and medical complexity Without NDIS-funded support workers she would not have been able to be safely cared for while had transition back workforce financial reasons This was luxury It essential support allowed both child Family ordinary life Too often Disability publically framed optional extras unnecessary expenses In reality These allow children With disability access early education social connection inclusion developmental opportunities safety enabling parents carers remain connected employment broader community Without appropriate supports many Families pushed financial hardship Social exclusion

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1912

Accessibility and support should not be viewed as special treatment. They are what make equal participation possible. There is an increasing narrative that this level of care should simply be considered “parental responsibility.” While parents absolutely love and care for their children, the level of medical care, therapy implementation, supervision, coordination, advocacy, and emotional labour required in situations like ours goes far beyond what is ordinarily expected in parenting. This labour is intensive, specialised, relentless, and often invisible. The proposed Bill appears to reinforce ableist assumptions that disabled people and their families should absorb increasing levels of hardship privately, rely more heavily on unpaid carers, or accept reduced participation and quality of life in the name of “sustainability.” Particularly concerning is the shift in the objects and principles of the NDIS away from the individual needs and goals of participants and toward “financial sustainability of the Scheme.”While sustainability is important, people with disability should not primarily be viewed through the lens of cost containment. Disability supports are not luxuries or unnecessary spending. Accessibility, therapies, communication supports, equipment, supervision, and care are what allow people with disability to participate in education, relationships, employment, family life, and the broader community.The Bill also appears to significantly expand discretionary powers given to the Minister and NDIA while simultaneously reducing transparency, review rights, and safeguards forparticipants.No system that holds this much power over people’s lives should operate without strongaccountability and oversight. The proposed reforms would allow broad rule-making powers that can substantially alter howthe NDIS operates, while reducing opportunities for parliamentary scrutiny and reducingsupportants’ ability to challenge decisions affecting essential supports. The Bill also proposes changes that may:

• make the NDIS significantly harder to access through standardised functional assessmentsthat may fail to capture the complexity and variability of disability,* require people to undergo “all appropriate treatment” before becoming eligible,potentially overriding personal autonomy and disadvantaging people who cannot realistically accesstreatment.Often people can’t possibly afford exhausting all appropriate treatment options orthey are not available where they are located* remove or reduce supports even when those supports are assessed as reasonableand necessary,based on broad funding caps and sustainability considerations,

• shift greater caring responsibilities onto families and informal supports, including presumptions regarding parental responsibility,
• reduce participants’ ability to seek reassessments when plans are inadequate,
• permit increased automated decision-making in areas that profoundly affect people’s lives,
• and override multiple Federal Court decisions that previously strengthened protections and rights for people with disability.

I am particularly concerned that these reforms fail to adequately recognise the reality that many state-based and mainstream supports have already been reduced, redirected, or withdrawn. Families who do not gain access to the NDIS are often left with impossible choices:

• reduce or leave employment to provide care; pay privately for essential therapies and supports;* or go without services entirely.* For many families, the NDIS is not an “extra.” It is the only pathway to access essential Supports. Early intervention is not optional.Itsupports developmentcommunicationparticipationregulationindependenceand quality of lifeIt can also reducethe nee dfor more intensive anda costly supportslater on.A sustainableN DIS shouldnot mean reducing accessto Support.I tshouldmean building a society wherepeoplewithdisabilityare genuinely includedsupported earlytreated withdignity,and given equitable opportunities toparticipate.We shou ld be moving toward asocietythat values accessibility inclusionandequity—not one th at places increasinglyimpossibleburdenson disabledpeop lean theirfamilieswhile reframingessentialsupportas unreasonable expectations.I urge Parliamentandsenate Committeeto carefully considerthe long-term human consequencesofthese proposed changesparticularly forth echildren peopl ewith complex disabilit y,famili esalready operating beyond exhaustion.Please donot take awayth opportunity people disabilitytheir fam iliesaccess thesupports they need live safely participate meaningfully thrive.