Parliamentary Submission — Proposed Changes to the National Disability Insurance Scheme

Personal Submission from a Lifelong Carer, Sister, Guardian, Mother and Worker

My nae is

Iam a mother, employee, sister, legal guardian and lifelong unpaid carer. Since childhood, I have cared for immediate family members with significant disability, balancing these responsibilities alongside education, full-time work, parenting and household responsibilities.

I currently am the legal guardian and support multiple family members with complex disability support needs, including my mother Ma. who lives with severe psychosocial disability (Treatment resistant schizophrenia, Borderline Personality Disorder, Major Depressive Disorder, CPTSD and Anxiety) and resides in Supported Independent Living (SIL), my brother Ca. who lives with Level 3 Autism Spectrum Disorder and Moderate Intellectual Disability and resides in Supported Independent Living (SIL), and my younger brother Ja. who lives with Level 3 Autism Spectrum Disorder, Profound Intellectual Disability, is non-verbal and also lives in Supported Independent Living. I also provide informal support to my younger sister, E || who has Level 1 Autism, C-PTSD, Recurring Depressive Disorder and Anxiety.

For my family, the National Disability Insurance Scheme (NDIS) is not an abstract policy discussion or a budget measure. It is what keeps people safe, housed, functioning, connected to community and out of crisis.

The proposed changes to the NDIS are deeply personal to us because they will shape whether my family members are able to maintain stability, dignity, independence and participation in society.

What does the NDIS mean for you right now?

Right now, the NDIS is the difference between functioning and crisis for my family.

The NDIS provides the practical supports that compensate for disability-related impairments and allow my family members to live safely and participate meaningfully in their communities.

For my brother Ca. the NDIS provides supports that assist with emotional regulation, routine, prompting, transport, supervision, functional skill development and community participation. Ca currently works, and this participation is made possible through structured disability supports that assist him to regulate, travel, participate and maintain consistency. Community participation is not recreational for him - it is a critical part of sustaining his independence, confidence, routine and employment.

For my younger brother Ja: who is non-verbal and lives with profound disability, supports are essential to his regulation, safety and wellbeing. Ja lives in Supported Independent Living and relies heavily on structure, routine and specialised support to remain emotionally regulated and stable. Community participation and capacity-building supports

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are interconnected with his SIL supports and help maintain the consistency required to prevent regression and behavioural escalation.

For my mother M a. who lives with severe psychosocial disability in Supported Independent Living, NDIS supports are life-changing and stabilising. M

eperiences severe and persistent mental illness, including distressing auditory hallucinations that affect her functioning daily. Community participation gives her routine, social engagement, meaningful activity and, importantly, temporary relief from distressing voices that are present throughout the day. These supports are not optional or social luxuries - they help preserve her mental stability and dignity.

The NDIS also enables informal carers like me to continue caring sustainably. I work full- time, parent a young child and coordinate complex disability systems across multiple family members. Without formal disability supports, the caring burden becomes unsustainable and I would likely need to cease employment which in this economy is not currently an option for me.

For families like mine, the NDIS is not an extra. It is the infrastructure that prevents crisis. How do you feel about the proposed changes to the NDIS Act?

I feel deeply concerned about the proposed changes.

My concern comes not from ideology or politics, but from lived experience.

Families like mine already spend enormous time fighting for supports that specialists repeatedly confirm are necessary. We are required to repeatedly justify permanent disability, provide evidence, appeal decisions and navigate increasingly complex systems simply to maintain stability.

The proposed changes appear to move the NDIS away from an individualised and functional disability support scheme toward a narrower, more restrictive and more discretionary system.

Terms such as “sustainability,” “clarity” and “integrity” are frequently used, but from the perspective of carers and participants, these words often translate into fear of reduced supports, delayed access, narrower definitions and more barriers to receiving assistance.

I am particularly concerned that people with Autism Spectrum Disorder, Intellectual Disability and psychosocial disability may increasingly be treated through a lens of restriction and cost containment rather than support and participation.

Disability-related support needs do not disappear because funding is reduced. The cost simply shifts elsewhere - to unpaid carers, hospitals, mental health systems, emergency services, housing systems and already overwhelmed families.

Do you feel these changes have been explained clearly enough? No.

The changes have not been clearly explained in practical, everyday terms.

• Families are told these reforms are necessary for sustainability, but we are not clearly told what this means in real life.

• What supports will no longer be funded?

• How will decisions be made?

• How will functional impairment be assessed?

• How will disability supports be distinguished from mainstream services that are already inaccessible or unavailable?

• How will people with complex autism, intellectual disability and psychosocial disability be protected from inappropriate reductions?

Many carers are already exhausted and operating in crisis management mode. We should not be expected to interpret legislative ambiguity while simultaneously trying to maintain safety, employment, housing and health for vulnerable family members.

There has not been enough transparency about the likely consequences of these reforms for real people.

What would these changes mean for you, your family, friends, carers or community?

For my family, reductions in supports would not create independence.

They would create immediate crisis.

For C , reductions to community participation would likely place his employment at risk. His supports assist with routine, regulation, confidence, transport, prompting and functional participation required for him to maintain work. Losing these supports would likely increase isolation, reduce independence and place him at risk of losing his job.

For J , reductions to community participation or capacity-building supports would likely cause significant regression and destabilisation. J profound disability means consistency and structured supports are essential. He is non-verbal, highly dependent on routine and vulnerable to emotional dysregulation when supports change.

A reduction in supports would likely result in escalation of behaviours of concern, deterioration in regulation and increased crisis presentations.

J currently lives in Supported Independent Living. His support ecosystem works together to maintain placement stability and safety. Reduced preventative supports may destabilise this arrangement and increase the risk of crisis-driven responses, more restrictive interventions and higher-intensity care requirements.

For my mother M , reductions to community participation would likely have serious consequences for her mental health.

M | |

experiences distressing voices each and every day. Community participation helps interrupt this distress by providing routine, meaningful activity, social connection and temporary relief from relentless symptoms.

Without these supports, her mental health would likely deteriorate rapidly. Reduced access to engagement and structure increases the likelihood of isolation, psychiatric destabilisation, hospitalisation or suicide.

The consequences would not stop with the individual participant.

The impacts would flow to me as an unpaid carer, to my daughter, to our wider family, to workplaces, to emergency systems, hospitals and communities already struggling under demand.

The burden does not disappear when disability supports are removed. It shifts.

What would happen if your social and community supports were reduced or removed?

Social and community participation supports are often misunderstood as optional or recreational.

For people with significant disability, they are preventative and protective.

For C, community participation supports help sustain employment, confidence, routine, social engagement and independence. Removing them would likely contribute to unemployment, isolation and regression.

For P|, community participation provides predictability, regulation, structured routine, sensory stability and meaningful engagement that prevent distress and behavioural escalation. These supports are preventative. Removing them would likely contribute to crisis, increased behaviours of concern and destabilisation of his SIL placement.

For WO community participation supports are fundamental to maintaining mental wellbeing. They provide relief from social isolation and help interrupt severe psychological distress caused by persistent auditory hallucinations. Removing them would likely increase psychiatric instability and crisis presentations requiring acute intervention.

A person who is isolated and unsupported does not become more independent. They become more vulnerable.

What would happen if your capacity-building supports were reduced or removed — or if you never had access to them in the first place?

Capacity-building supports are essential because they maintain function, prevent deterioration and reduce crisis.

For C, these supports help maintain employment participation, emotional regulation, confidence, communication, routine and independence.

For J | Capacity-Building Supports

Capacity-building supports assist with regulation, communication, behavioural stability and functional participation. Without these supports, deterioration rather than improvement is the likely outcome. Increased behavioural distress, crisis escalation and dependence would place pressure on carers, SIL providers and emergency systems.

For ini. Recovery-Oriented Psychosocial Supports

Recovery-oriented psychosocial supports help maintain coping strategies, routine, functioning and mental wellbeing. Without them, deterioration becomes more likely and pressure shifts toward crisis mental health systems and hospitalisation.

Families like mine cannot simply absorb these responsibilities.

When formal supports are reduced, unpaid carers are expected to become therapists, support workers, behavioural specialists, transport coordinators, mental health workers, advocates and crisis responders.

We do this while trying to maintain employment, raise children and preserve our own wellbeing.

The NDIS should not only be assessed by short-term cost.

It should be assessed by what it prevents: unemployment, family collapse, crisis presentations, psychiatric hospitalisation, homelessness, behavioural escalation, carer burnout and exclusion from community life.

Disability does not disappear when supports are removed. The cost is simply transferred elsewhere.

They are about whether people remain safe, connected, employed, mentally stable and able to live with dignity in the community.