Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission submitted anonymously on behalf of an impacted Queensland family.

Introduction

This submission is from parents who care informally about their adult child with severe lifelong disabilities as well as another teenager also living within similar conditions but still under old-style plans without reviews or reassessments post-December last year; our daughter now being grown-up yet lacking adequate transition planning which makes us worried she might be cut off if applying again after nearly two years despite NDIA’s repeated refusal to consider it.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1881

It risks dismantling the very foundations that made the NDIS a transformative human rights reform.

The Proposed Legislative Changes Shift the NDIS Away from Individual Need

• NDIS was based on:
  • A simple but powerful principle: Disability support should be based on individual need. This bill moves away from this principle: + Expansion in ministerial powers, + Increased use of delegated rule-making, + Tighter controls over support categories, + Narrower access criteria, + Reduced reassessment flexibility, + Stronger power to reduce funding across groups of supports represent fundamental shift towards centralised administrative control; These changes create system where policy settings shape support rather than lived reality; families like ours face profound uncertainty due to proposed budgetary shifts intended as blunt instruments correcting decades’ exclusion and neglect experienced with disability Australians. The NDLS never meant to be such instrument, hence backward move is concerning adults severe intellectual disabilities autism complex needs deeply concerned lifelong nature of ID does not disappear age progress gradual built consistent therapeutic structured community emotional regulation work skill-building routine trusted relationships. Proposals reductions social participation capacity building strike heart allows adults build maintain meaningful lives daughter these supports are optional.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1881

They enable her:

• Maintain daily living skills
• Regulate emotions
• Participate safely in the community
• Build confidence
• Maintain relationships
• Work toward future independence
• Reduce social isolation
• Engage with life beyond the home Without these supports, she would not simply “manage with less.” She would lose function. She would lose skills. She would become increasingly isolated. She would become more dependent. She would spend more time withdrawn, dysregulated and disconnected fromcommunity life. Goals that should remain possible such as gradual future independentliving greaterautonomy meaningful work participationand self-directed adulthoodwouldbecomeincreasingly out of reach.For adultswith severe disabilityindependence is often built over decades.ThisBill underminesthat long-term investment.The Bill Fails People With Fluctuating And Invisible DisabilitiesThe proposed tighteningof eligibility criteria increased reliance on functionalassessments anda requirements torehaustreatment options are especially dangerousfor peopleliving conditionssuchas:Ehlers-Danlos SyndromeHypermobility Spectrum DisorderChronic fatigueconditionsPOTSChronic pain disordersFluctuating neurological conditionsThese disabilities do no always present consistently.Function fluctuates.Capacity can vary dramatically day to day.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1881

A person may appear capable during a short assessment while experiencing severe delayed physical consequences afterwards.

This Bill risks embedding systems that fail to recognise this complexity. For people living with hypermobility-related disability and fatigue disorders, treatment is often about maintaining function and preventing deterioration, not cure. Requiring repeated proof, repeated treatment attempts, or narrow functional testing creates barriers that are medically inappropriate and harmful. These changes risk excluding people whose disabilities are real, serious and life-limiting simply because they do not fit neat administrative categories.

The Gendered Impact: What This Means for Mothers of Adult Disabled Children One of the most serious failures of this Bill is its failure to recognize the economic and social burden these changes place on women.When supports are reduced, disability does not disappear.The work is transferred.And overwhelmingly, it is transferred to women.Mothers of disabled adult children already provide extensive unpaid labour including:

• Supervision
• Emotional regulation support
• Appointment coordination
• Transport
• Advocacy
• Crisis prevention
• Meal support
• Daily prompting
• Personal care
• Behavioural support
• Therapy coordinationThe NDIS allows many mothers to remain in the workforce while still supporting their adult children.This is not only socially beneficial.It is economically responsible. When support is reduced, many mothers are forced to:

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1881

• Reduce paid work
• Turn down advancement opportunities
• Exit employment entirely
• Lose income
• Lose superannuation
• Experience burnout
• Absorb escalating unpaid care responsibilities This directly undermines national commitments to women’s economic participation and gender equality. A Government cannot credibly claim to support women while simultaneously introducing reforms that shift formal disability support onto unpaid female labour. The Economic Consequences of These Changes Are Short-SightedThese reforms are being presented as necessary for sustainability.True sustainability is built through strategic investment, early intervention, regulationand long-term planning.It is not achieved by reducing supports that prevent larger costs.Removing or reducing social, community and capacity-building supports will increaselong-term expenditure elsewhere.It will increasem Carer burnoutm Workforce exitsm Hospital presentationsm Mental health deteriorationm Crisis intervention needsm Acute service demandm Future intensive support requirementsFor families like ours, support is preventative infrastructureIt keeps people stable, connected, regulated and progressing.When supports are reduced, costs do not disappear.They are simply shifted:Onto familiesonto womento hospitals

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

Submission 1881

• Onto crisis systems
• Onto future governments

This is not economic reform. It is deferred social cost.`

Human Rights Concerns`

The reforms raise serious concerns regarding Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities and principles reflected in Queensland Human Rights Act 2019.The bill risks undermining core rights including:

The right to equality and non-discriminationTighter access criteria, standardised assessment mechanisms risk disproportionately excluding people with fluctuating complex invisible disability.

The right to live independently and be included in communityReducing community participation directly threatens disabled persons' ability meaningfully participate society.Isolation inclusion.Confinement home no participation.Dependency lack support independence.

Right dignity autonomy self determinationBroad powers allowing funding reductions across categories weaken individual decision-making participant control.Disabled decisions based actual lives needs.

Women carers policies increase unpaid caring burdens without recognition or worsen structural gender inequality.NDIS established practical expression commitment to disability rights.Bill weakening that commitment. What These Changes Would Mean Our Family If our daughter’s supports reduced removed:``

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

Submission 1881

• She would become increasingly isolated.
• Her emotional regulation would decline, which means mental health hospital submissions.
• Her independence would reduce.
• She would lose opportunities to practice life skills.
• She would become more reliant on family for daily aspects of her life.
• She would lose progress she’s taken years building towards.
• As parents, our burden will shift directly onto us as caregivers while trying to maintain employment, financial stability, and family functioning; already barely surviving paying mortgage costs not covered under Medicare nor private healthcare insurance additional medical expenses.

Submission 1881

• A fairer tiered system for provider registration that is fairer so that you don’t price genuine people who care about people with a disability out of the market. It isn’t fair that a sole trader support worker pays the same as has conditions meet as multinational company hiring thousands workers pay.

Don’t allow legislation changes be put into place until other programs systems are funded functional like thriving kids foundational support make sure there’s an objection appeals process c## Conclusion The NDIS exists because Australia recognised than disabled deserve more than survival They deserve dignity Opportunity Connection Autonomy Community Secure future for NDIs built reducing support increasing fear shifting burden back onto family Strengthen rights protecting individualised supports investing long-term independence ensuring no Australian pushed backwards isolation exclusion This Bill in its current form doesn’t secure Future NDI Risks undoes progress disabled Aussies fight hard achieve We urge committee rejected harmful provision protected promise NDS future generation