Communication needs and family isolation (Family or carer experience) | External submission

Submission 719

Dear Committee Secretary,

Please accept the below as my submission to the Senate Community Affairs Legislation

Committee inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026. I request that my name and identifying details be withheld from publication, as this submission includes personal information about my children, disability, family circumstances and the impact of the proposed changes on our household.

I am writing as a mother and full-time carer of two children with signiﬁcant disability related needs.

Both of my children have autism diagnoses. One of my children is non speaking/minimally speaking, and both children need signiﬁcant support across communication, emotional regulation, self-care, learning, safety, sleep, school attendance, behaviour, relationships and everyday life.

Communication is a major issue in our home. My children need signiﬁcant help to communicate even basic wants and needs, such as hunger, thirst, needing help, needing a break, or feeling unsafe. They cannot reliably express pain, explain what is wrong, or self-advocate. This means distress can quickly turn into behaviour, self-injury, shutdowns or unsafe situations because their needs are not being understood quickly enough.

I cannot safely go out into the community on my own with one child, let alone both children together. That is the reality of our support needs. It is not because I do not want to participate in community life. It is because ordinary environments can become unsafe very quickly without the right support — due to communication barriers, bolting risk, sensory overwhelm, distress, self-injury, emotional dysregulation, or behaviour that other people do not understand.

So when the Government talks about community participation, inclusion, or shifting supports into other systems, I need decision-makers to understand what that actually means for families like mine. A community program does not magically make my children safe, regulated, understood or included. Without individualised support, we simply do not go. We become more isolated.

Our family already lives with the reality behind the policy language. We live with sleepless nights, constant vigilance, poor school attendance, distress, self-injury, behaviours of concern, and the emotional strain of trying to keep children safe while still trying to give them a future.

We are often on high alert for danger — bolting, unsafe behaviour, emotional distress, sensory overwhelm, communication breakdowns, self-injury, or situations our children

Submission 719

cannot manage without support. Ordinary activities that other families take for granted can become exhausting, unsafe or impossible.

We also live with exclusion. We live with the looks from people in the community who do not understand disability. We live with the isolation that comes when your child cannot easily participate in ordinary places, ordinary activities, ordinary friendships, or ordinary school life without the right support.

At times, school attendance has dropped below 40%, not because education is unimportant, but because disability-related needs, distress, regulation difficulties and lack of adequate support make ordinary attendance extremely difficult.

My children are already in support classes, and even then, the school system cannot meet all of their disability needs. That is not a criticism of individual teachers. It is the reality of an overwhelmed system. Schools are already stretched. Support classes do not replace speech therapy, occupational therapy, behaviour support, communication support, emotional regulation support, daily living skill-building, or the individualised supports children need to build independence.

Before I became a full-time carer, I was studying to become a teacher. I was never able to complete my work placement because my caring responsibilities became too great, and I was never able to return to work. I understand that teachers are expected to support inclusion, but teaching is not the same as therapy. Teachers have an important role, but they are not speech pathologists, occupational therapists, psychologists, behaviour practitioners or disability therapists. They cannot be expected to replace the individualised disability supports that children with signiﬁcant needs require outside the classroom.

This is what people do not understand: when support is reduced, people with disability are not magically included by mainstream systems. They are pushed further out. Families stop going places. Children miss out. Siblings miss out. Parents become more isolated. The whole household becomes smaller and more restricted.

That is not inclusion. That is pushing people with disability backwards.

If the goal is true inclusion, then people need real, individualised supports that help them safely participate, communicate, build skills, form relationships and be part of community life. Removing or reducing those supports does not create inclusion. It creates more isolation.

This is why the proposed changes are so frightening. They are not just “budget settings” or “scheme sustainability measures” to families like mine. They affect whether children can build communication, daily living skills, safety, emotional regulation, relationships, conﬁdence and some pathway toward supported independence.

Submission 719

I have already contacted multiple elected representatives, Senators and Ministers about my concerns. What I keep receiving back is Government messaging about “securing the NDIS for future generations,” “returning the NDIS to its original intent,” “slowing cost growth,” “ending plan rollovers,” “tightening early reviews,” “resetting budgets,” “tackling fraud,” and creating community supports.

That kind of language does not answer the real concern: what happens to people with disability and their families when individualised supports are cut, capped, narrowed, delayed or shifted into systems that are not equivalent to the NDIS?

I am not reassured by broad statements about fraud, sustainability or reform when the lived reality for families like mine is already constant underfunding, delay, reviews, tribunal battles, and children missing out on crucial supports during important developmental years.

The system is already broken for families like mine. I have spent more than three years across two separate AAT battles trying to secure adequate supports for my child. During that time, he has missed out on crucial supports during important developmental years. He has now turned 9, and we are still battling.

So when I see a Bill that may make it easier to cut, cap, narrow, suspend or restrict support, it does not feel like reform. It feels like another barrier being placed in front of families who are already exhausted.

The NDIS was meant to provide individualised support based on actual need. My concern is that this Bill moves the Scheme further away from the person and closer to broad powers to reduce supports, cap supports, narrow eligibility, restrict reassessments, remove unspent funds and shift responsibility onto other systems that are not equivalent.

I am particularly concerned about:

Section 34A, which may allow plan funding to be reduced by percentage cuts across whole support categories.
Section 33(2EA), which may allow supports to be capped by cohort instead of actual individual need.
Section 34(1)(aa), which narrows supports to needs “directly arising” from impairment, which could exclude people with complex and overlapping disability needs.
Section 50A, where automatic renewal may mean unspent funds are lost, even when funds were unspent because of provider shortages, waitlists, illness, ﬂares, family crisis or difficulty ﬁnding suitable providers.

Submission 719

Section 48A, which may make reassessment harder, even when a participant’s needs change.
Sections 40A and 30(1A), which raise serious concerns about suspension and revocation of access.
Section 9B, which introduces a new eligibility test from 2028.
Schedule 5, which appears to allow the Minister to change how the Act operates for 12 months without proper parliamentary scrutiny.

I do not object to fraud being tackled. Fraud should be tackled directly and aggressively. But fraud and participant support needs are not the same thing.

Families like mine are not fraud. Our children’s needs are not rorts. Their therapy, communication support, self-care support, regulation support and participation support are not luxuries.

If this was genuinely about fraud, then fraud should be targeted directly — not through broad powers that risk reducing, capping, narrowing or restricting supports for people with real and signiﬁcant disability.

For families like mine, these are not abstract legal changes. They affect whether my children can communicate, sleep, attend school, stay safe, reduce self-injury, build basic life skills, and have any real chance at independence.

A cohort cap cannot understand my child.

A percentage cut cannot understand my child.

A narrow “directly arising” test cannot understand the reality of a child whose communication, behaviour, anxiety, sensory needs, sleep, self-care, school attendance and safety are all connected.

If supports are reduced, capped or made harder to access, disability needs will not disappear. They will simply be pushed somewhere else — onto families, schools, hospitals, crisis services and unpaid carers.

The Government may say these supports will exist elsewhere, through schools, health services, community programs or new “foundational” supports. But some support somewhere is not the same as the right individualised support at the right time, delivered by people trained to meet that person’s actual needs.

Community supports may have a place. But they are not the same as individualised NDIS supports.

A community program cannot replace speech therapy. A community program cannot replace occupational therapy.

Submission 719

A community program cannot replace behaviour support. A community program cannot replace communication intervention. A community program cannot replace individualised support to build self-care, safety, regulation, relationships and independence.

Community inclusion is important, but inclusion does not happen just because a program exists. Inclusion only works when the person has the support they need to safely and meaningfully participate.

If a child cannot communicate reliably, cannot tell someone they are hungry, thirsty, in pain, scared or overwhelmed, cannot regulate, is unsafe in the community, self-injures, bolts, or cannot participate without skilled support, then a general community activity does not solve the problem. It can simply become another place where the child fails, is excluded, judged, or the family stops attending.

That is not true inclusion.

The same applies to schools. Schools are not the same as the NDIS, and many schools are already struggling to meet the needs of children with disability.

A support class cannot replace individualised speech therapy. A support class cannot replace occupational therapy. A support class cannot replace behaviour support. A support class cannot replace AAC and communication support. A support class cannot replace emotional regulation work. A support class cannot replace individualised daily living skill-building.

It is not honest to suggest that children can simply be shifted into schools, mainstream services, “foundational supports” or community programs when those systems are either not in place, not individualised, not disability-speciﬁc, already overwhelmed, or not designed to deliver the same outcomes as NDIS-funded supports.

True inclusion does not happen by cutting individualised supports and hoping schools, families and community services absorb the need.

True inclusion happens when people with disability have the right support to communicate, regulate, participate safely, build relationships, learn daily living skills and move toward as much independence as possible.

Moving people away from individualised NDIS supports does not create independence. It often removes the very supports that help a person gain independence, choice and control over their own life.

Where is the dignity, choice and control if a person can only access support once they are in crisis?

Where is the independence if families are forced to ﬁll every gap?

Submission 719

Where is the future planning if children lose the supports that help them build communication, self-care, sleep, safety, emotional regulation, relationships and participation?

The human cost is enormous.

It pushes mothers and carers further out of the workforce. It pushes families closer to poverty. It isolates children and adults with disability from community life. It increases the mental health load on parents, siblings and participants. It destroys hope for future independence. It leaves families terriﬁed about what happens when they are no longer here to care for their child.

Families like mine already live with that fear every day.

I invite any Minister, Senator or Member of Parliament who intends to support this Bill to spend seven full days inside a household like mine before deciding that these changes are positive.

Spend seven days seeing the unpaid care, the exhaustion, the broken sleep, the constant high alert, the school disruption, the self-injury, the behaviour that comes from distress, the communication barriers, the inability to safely leave the house alone with one child let alone two, the sibling impact, the ﬁnancial pressure, the public judgement, the isolation, and the fear about the future.

Then look families like mine in the eyes and say that broad powers to cut, cap, narrow or restrict supports will not push people with disability further out of community life.

Because from where I stand, this Bill does not feel like “securing the NDIS.” It feels like shifting the burden away from government and onto disabled people, families, mothers, siblings, schools, hospitals and crisis systems.

We have already seen tragic cases in Australia where families under extreme pressure reach crisis point. Reducing support will only increase the risk of more families being pushed to the edge.

The NDIS should prevent crisis — not create it.

The NDIS was not meant to simply keep people alive or out of immediate crisis. It was meant to support people with disability to communicate, participate, build skills, develop independence, and live with dignity, choice and control.

For my children, NDIS support is not just about survival. It is about whether they can build language, communication, self-care, sleep, safety, emotional regulation, relationships, conﬁdence, purpose and dignity.

Submission 719

I have held hope that with the right supports, my children could gain more communication, more independence, more connection, and some form of supported, meaningful life. This Bill makes families like mine fear that hope is being stripped away and replaced with capped supports, narrowed eligibility, restricted reassessments and vague promises that other systems will somehow ﬁll the gap.

They will not.

Those supports may be promised, proposed or described in Government messaging, but they are not the same. They are not guaranteed to be in place when families need them. They are not equivalent. They are not individualised. They do not replace the specialised supports children and adults with signiﬁcant disability need to build independence, communication, safety and dignity.

Please do not respond to families with broad statements about sustainability, fraud, community programs or “securing the NDIS.” Please consider the real-world effect of these rules.

I ask the Committee to consider:

Will broad percentage cuts to support categories mean people lose supports they still need to communicate, sleep, regulate, build daily living skills, participate safely and work toward independence?
Will cohort-based caps mean a person’s support is limited because they fall into a category or group, rather than because someone has properly assessed what they actually need?
Will narrowing supports to only those “directly arising” from one eligible impairment exclude children and adults whose disability needs are complex and connected — especially where communication, behaviour, anxiety, sensory needs, learning, self-care, sleep, school attendance and participation all affect each other?
Will automatic loss of unspent funds punish families where funds were not unused because they were unnecessary, but because of provider shortages, waitlists, illness, ﬂares, school disruption, family crisis, or difficulty ﬁnding suitably skilled providers?
Will restrictions on reassessment trap children in inadequate plans while their needs change, regressions occur, behaviour escalates, self-injury increases, communication drops, school attendance falls, or families reach crisis point?
Will shifting people away from individualised NDIS supports into schools, health services, community programs or “foundational supports” cause

Submission 719

worse outcomes where those systems are not equivalent, not individualised, not properly funded, not yet in place, or not designed to replace therapy and disability-speciﬁc support — especially when schools are already overwhelmed and support classes still cannot meet all disability-related needs?

Will participants be capped, reduced or redirected without an actually available, properly funded, disability-speciﬁc, individualised alternative that can meet their needs in real life — not just in Government messaging?
Will these changes reduce the very supports that help people with disability communicate basic needs, express pain, stay safe, build self-care, sleep, emotional regulation, relationships, community participation, dignity, choice, control and future independence?
Will reducing individualised supports simply shift the burden onto unpaid carers, mostly mothers, increasing poverty, isolation, mental health strain, sibling impact, crisis risk and fear about the future?
Will children and adults with signiﬁcant disability still receive support based on actual need, not budget targets, capped categories, cohort assumptions or vague promises that other systems will ﬁll the gap?

The question is not whether the NDIS should address fraud. It should. Fraud should be tackled directly and aggressively. The real question is whether people with genuine, permanent and signiﬁcant disability will be made to pay the price through reduced access, narrower rules, capped supports and fewer pathways to independence.

The Government says people with real and signiﬁcant disability will be protected. My children are those people. Their disabilities are real. Their needs are real. Their futures matter. They should not lose the supports that give them a chance at communication, dignity, participation, relationships and some level of independence.

I respectfully ask the Committee to recommend that this Bill not proceed in its current form.

At a minimum, I ask that the Bill be amended to protect:

individualised planning based on actual functional need;
access to reassessment when needs change or plans are inadequate;
safeguards against suspension or revocation;
proper Parliamentary scrutiny over any caps, cuts or changes to support rules;
protection from automatic loss of unspent funds where underspending is caused by system barriers;

Submission 719

protection for people with complex and overlapping disability needs;
legally enforceable guarantees that no participant will be moved out of the NDIS unless an adequate, funded, accessible and individualised alternative is already in place.

Please protect the Scheme by protecting the people it was created for.