Submission 1881

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

Submission made anonymously by a Queensland family directly impacted by the proposed reforms

Introduction

This submission is made by the parent and primary informal carer of an adult child with severe and lifelong disability and a teenager with a lifelong disability. I am also a person with a disability that does not claim the NDIS. Also both are still on an old style plan and have not moved to pace or had a review/reassessment since last 2021. My daughter is now an adult and doesn’t have an adequate adult plan so we are scared that she will be cut further if we apply. We have been asking for one for nearly two years but the NDIA keeps saying not to bother.

Our family lives the reality of disability every day.

Our adult daughter lives with significant intellectual disability, autism level three, chronic fatigue, and complex hypermobility-related disability that significantly impacts her physical capacity, energy regulation, functional independence, and daily participation.

We are also a working family. My husband actually has two jobs and I have one just to try and afford the costs we already have.

Like many families across Australia, we have worked hard to build stability, independence and a future for our daughter through the support made possible by the National Disability Insurance Scheme.

We support a sustainable NDIS.

We support strong fraud prevention.

We support accountability and transparency.

We support reforms that strengthen the Scheme for future generations.

What we cannot support are reforms that fundamentally weaken participant protections, reduce individualised supports, increase administrative power, narrow access pathways, and shift the burden of disability back onto families.

The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 represents one of the most significant and concerning shifts in the Scheme since its creation.

Despite its title, this Bill does not secure the future of the NDIS.

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

The NDIS was built on a simple but powerful principle:

Disability support should be based on individual need.

This Bill moves away from that principle.

The expansion of ministerial powers, the increasing use of delegated rule-making, tighter controls over support categories, narrower access criteria, reduced reassessment flexibility, and stronger powers to reduce funding across groups of supports represent a fundamental shift from individualised support toward centralised administrative control.

These changes create a system where support can increasingly be shaped by broad policy settings and budget mechanisms rather than the lived reality of individual disability.

For families like ours, this creates profound uncertainty.

The NDIS was never intended to be a blunt budget instrument.

It was created to correct decades of exclusion, neglect, institutionalisation and systemic disadvantage experienced by Australians with disability.

The proposed changes move us backwards.

What These Changes Mean for Adults with Severe Intellectual Disability and Complex Needs

For adults with severe intellectual disability, autism and complex support needs, these reforms are deeply concerning.

Intellectual disability is lifelong.

Autism support needs do not disappear with age.

Progress is often gradual, built over many years of consistent therapeutic support, structured community access, emotional regulation work, skill-building, routine and trusted relationships.

The proposed reductions to social and community participation funding and capacity-building supports strike at the heart of what allows adults with severe disability to build and maintain meaningful lives.

For our daughter, these supports are not optional.

Submission 1881

They are essential.

They enable her to:

• 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 from community life.

Goals that should remain possible, such as gradual future independent living, greater autonomy, meaningful work participation, and self-directed adulthood, would become increasingly out of reach.

For adults with severe disability, independence is often built over decades.

This Bill undermines that long-term investment.

The Bill Fails People with Fluctuating and Invisible Disabilities

The proposed tightening of eligibility criteria, increased reliance on functional assessments, and requirements to exhaust treatment options are especially dangerous for people living with conditions such as:

• Ehlers-Danlos Syndrome
• Hypermobility Spectrum Disorder
• Chronic fatigue conditions
• POTS
• Chronic pain disorders
• Fluctuating neurological conditions

These disabilities do not always present consistently.

Function fluctuates.

Capacity can vary dramatically day to day.

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 recognise 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 coordination

The 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:

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-Sighted

These reforms are being presented as necessary for sustainability.

True sustainability is built through strategic investment, early intervention, regulation and long-term planning.

It is not achieved by reducing supports that prevent larger costs.

Removing or reducing social, community and capacity-building supports will increase long-term expenditure elsewhere.

It will increase:

• Carer burnout
• Workforce exits
• Hospital presentations
• Mental health deterioration
• Crisis intervention needs
• Acute service demand
• Future intensive support requirements

For families like ours, support is preventative infrastructure.

It keeps people stable, connected, regulated and progressing.

When supports are reduced, costs do not disappear.

They are simply shifted:

• Onto families
• Onto women
• Onto hospitals

Submission 1881

• Onto crisis systems
• Onto future governments

This is not economic reform.

It is deferred social cost.

Human Rights Concerns

These reforms raise serious concerns regarding Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities and the principles reflected in the Queensland Human Rights Act 2019.

The Bill risks undermining core rights including:

The right to equality and non-discrimination

Tighter access criteria and standardised assessment mechanisms risk disproportionately excluding people with fluctuating, complex and invisible disability.

The right to live independently and be included in the community

Reducing community participation supports directly threatens disabled people’s ability to participate meaningfully in society.

Isolation is not inclusion.

Confinement to the home is not participation.

Dependency caused by lack of support is not independence.

The right to dignity, autonomy and self-determination

Broad powers allowing funding reductions across categories of support weaken individualised decision-making and participant control.

Disabled people deserve decisions based on their actual lives and needs.

The rights of women and carers

Policies that increase unpaid caring burdens without recognition or support worsen structural gender inequality.

The NDIS was established as a practical expression of Australia’s commitment to disability rights.

This Bill risks weakening that commitment.

What These Changes Would Mean for Our Family

If our daughter’s supports were reduced or removed:

Submission 1881

• She would become increasingly isolated.
• Her emotional regulation would decline. Which would mean metal health hospital submissions
• Her independence would reduce.
• She would lose opportunities to practice life skills.
• She would become more reliant on family for all aspects of daily life.
• She would lose progress that has taken years to build.
• As her parents, the burden would shift directly onto us.
• We would absorb greater care responsibilities while trying to maintain employment, financial stability and family functioning. We are already barely surviving trying to pay the mortgage and additional medical costs that medicare or private health does not cover
• Our family’s future would become smaller. We may lose our family home and become homeless.
• Our daughter’s future would become narrower.

That is what these reforms mean in practice.

Not abstract efficiencies.

Not technical legislative reform.

Real people losing real opportunities to live full and dignified lives.

Recommendations

We call on the Committee to:

• Reject provisions that allow broad reductions across support categories.
• Protect participant rights to individualised assessment and review.
• Limit ministerial powers and strengthen parliamentary oversight.
• Ensure fluctuating and complex disabilities are explicitly protected.
• Preserve social and community participation funding.
• Protect capacity-building supports as essential long-term investment.
• Undertake a full human rights impact assessment and dont allow the liisglation to pass until this has been completed.
• Conduct genuine co-design with disabled people and families. So far this has not been done particularly for the cohort of intellectual disability or Invisible disability.
• Assess the gendered economic impacts on women and unpaid carers.
• Prioritise provider regulation and fraud prevention over participant restriction.
• Ensure human oversight of all AI systems so we don’t end up with another Robodebt.
• Make sure that NDIA staff require mandatory qualifications in allied health and disability. Particularly if they are going to do assessments or participant planning.

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 and has the same conditions to meet as a multinational company hiring thousands of workers.
• Dont allow the legislation changes to be put into place until other programs or systems are in place and funded and functional like thriving kids and foundational support.
• Make sure there is a genuine objection and appeals process.

Conclusion

The NDIS exists because Australia recognised that disabled people deserve more than survival.

• They deserve dignity.
• Opportunity.
• Connection.
• Autonomy.
• Community.

A secure future for the NDIS is not built by reducing support, increasing fear, or shifting burden back onto families.

It is built by strengthening rights, protecting individualised supports, investing in long-term independence, and ensuring that no disabled Australian is pushed backwards into isolation or exclusion.

This Bill, in its current form, does not secure the future of the NDIS.

It risks undoing the progress disabled Australians and their families fought so hard to achieve.

We urge the Committee to reject these harmful provisions and protect the promise of the NDIS for future generations.