Parent's concerns regarding early intervention therapies for a child with Autism Spectrum Disorder Level 3, Global Developmental Delay, and severe functional impairment (Family or carer experience) | External submission

Submission 2435

Submission to the Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Privacy request:  I request that  this submission be published without my name and without

identifying details of my child, husband, other child, or family. If de-identified publication is not possible, I request that this submission be treated as confidential.

Reason for privacy request: This submission concerns a very young child with significant disability and includes sensitive information about disability, child safety, family crisis, parental health, medical vulnerability, mental health, and ongoing NDIS-related proceedings. My child’s privacy, dignity and safety must be protected.

Submitter: Parent and primary carer of a young NDIS participant Child participant: Referred to in this submission as “Child A”

Location: Victoria

Introduction Thank you for the opportunity to make a submission about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am the mother and primary carer of a young child participant, referred to in this submission as Child A. Child A is a preschool-aged child with significant permanent disability, including Autism Spectrum Disorder Level 3, Global Developmental Delay, severe functional impairment, no reliable functional communication, significant dependence for daily living, and serious safety and supervision risks.

I understand that the Committee cannot resolve my child’s individual NDIS matter or overturn an NDIA decision. I am not asking the Committee to do that.

I am making this submission because our family’s experience shows why any reform to “secure the

NDIS  for future generations” must include stronger protections  for children, early intervention,

transparent decision-making, carer sustainability, transport access, safeguarding, and urgent interim support.

A sustainable NDIS must not be built by leaving children without the supports they need, or by pushing impossible care burdens back onto families who are already breaking.

Submission 2435

Main message The NDIS must be sustainable. But it must also be safe, lawful, evidence-based, child-focused and humane.

A sustainable NDIS cannot mean that a young child with profound disability-related needs is left without adequate therapy during the most important early intervention years of his life.

A sustainable NDIS cannot mean that parents are treated as unlimited unpaid substitutes for formal disability supports.

A sustainable NDIS cannot mean that professional evidence is provided, but not meaningfully acted on.

A sustainable NDIS cannot mean that families are forced into long review processes while the child, parents and siblings remain in an ongoing crisis.

The NDIS was created to support people with permanent and significant disability to live with dignity, safety, development, participation and opportunity. Reform must protect those principles, not weaken them.

Our family’s situation, de-identified Child A is a very young child with complex disability-related needs. He does not have reliable functional communication. He needs support to learn basic daily living, safety, communication, regulation and functional skills. His care needs are constant and intense.

We have provided professional evidence showing that Child A requires intensive multidisciplinary early intervention. This included evidence from medical and allied health professionals about his diagnosis, functional capacity, therapy needs, developmental delay, communication needs, safety risks, and the impact on the family.

This was not a request for luxury supports.

This was not a request for convenience.

This was not a request for support workers to replace us as parents.

We were asking for the formal early intervention therapies Child A needs because of his disability, so he has a fair chance to learn basic functional skills, communication, safety skills and life skills.

Submission 2435

We are his parents. We will always care for him. But parents cannot replace a multidisciplinary therapy team. Love does not replace speech therapy, occupational therapy, psychology, behaviour

support,  early  intervention,  functional  capacity  support, communication support  or  structured

professional intervention.

Without the right support at this stage, Child A risks losing vital early learning opportunities. The harm is not only short-term. It can affect his communication, safety, behaviour, independence, school readiness, emotional regulation, participation and future quality of life.

Early intervention is not optional for children like Child A For a child with severe autism, global developmental delay, no reliable functional communication and major functional dependence, early intervention is not simply “extra therapy”.

It is how the child learns to communicate.

It is how the child learns to understand the world.

It is how the child learns safety.

It is how the child learns daily living skills.

It is how the family learns how to support the child safely and effectively.

When early intervention is delayed or underfunded, the child does not simply “wait”. The child continues growing without the skills, support and structure needed to develop. The family continues living in crisis. Risks increase. Parents deteriorate. Siblings are affected. The child’s opportunity to learn basic life skills during the early developmental window is reduced.

A six-month or twelve-month delay for a very young child is not a small administrative delay. It is a significant part of that child’s early life.

Any NDIS reform must protect children from losing critical early intervention opportunities while decisions are reviewed, disputed or delayed.

Submission 2435

Professional evidence must be meaningfully considered Families are repeatedly told to obtain professional reports and evidence. We did that.

We provided professional evidence about Child A’s diagnosis, functional limitations, therapy needs, safety risks, daily living needs, communication needs, transport barriers, family circumstances and carer capacity.

But evidence only matters if it is genuinely considered.

A family should not provide medical, psychological, therapy, functional capacity, school and lived experience evidence, only to receive a decision that does not clearly explain why that evidence was not followed.

When  the NDIA  rejects,  discounts  or does  not  fund  supports recommended by  qualified

professionals, families should be given clear written reasons explaining:

what evidence was accepted;
what evidence was rejected or given reduced weight;
why professional recommendations were not followed;
how the child’s functional capacity was assessed;
how early intervention need was assessed;
how safety and safeguarding risks were assessed;
how carer capacity and informal support sustainability were assessed;
how the approved supports were considered sufficient. Without this, families are left confused, exhausted and forced into reviews and appeals just to understand how the decision was made.

Transparent reasons are not just an administrative issue. They are a fairness issue, a safety issue and a rights issue.

Submission 2435

Families cannot be treated as unlimited informal supports Our family has done everything possible for Child A. We are not unwilling to care. We are already caring far beyond normal parenting limits.

The primary carer has documented mental health deterioration, including escalation of major depression and increased medication. This was not provided as a request for NDIS to fund the parent’s personal treatment. It was provided because it directly affects whether the current informal care arrangement is safe and sustainable.

The second parent has recently undergone emergency life-saving brain surgery and has reduced capacity, including medical driving restrictions and recovery limitations.

We do not have practical nearby family members or informal supports who can safely take over this level of care.

Despite this, the NDIS process can still leave families feeling as if the system assumes parents can simply keep absorbing more and more care indefinitely.

This is not realistic.

It is not safe.

It is not sustainable.

Parents are human. Carers are human. Siblings are human. Families have limits.

When formal supports are not provided, the need does not disappear. It is transferred back onto the family. In our case, that means a medically deteriorating primary carer, a second parent recovering from major brain surgery, and a sibling living within the same ongoing crisis.

The NDIS must not treat family love as evidence that formal supports are unnecessary.

Safeguarding must include planning and funding decisions Safeguarding cannot only mean provider quality, fraud control or incident reporting.

Safeguarding must also include the risks created when a participant is left without adequate support.

For a child like Child A, inadequate support creates real risks:

risk to safety because of limited communication and supervision needs;

Submission 2435

risk of developmental harm due to inadequate early intervention;
risk of worsening functional delay;
risk of emotional and behavioural escalation;
risk to the primary carer’s mental health and ability to continue caring safely;
risk to the second parent’s recovery and safety;
risk to the sibling’s emotional wellbeing and family life;
risk that the whole family remains trapped in crisis. A decision that leaves a child and family without adequate formal supports is not neutral. It can create, continue or worsen risk.

Any reform must require the NDIA to identify and respond to safeguarding risks when making or reviewing plan decisions.

Where evidence shows a  child  is unsafe, carers are  collapsing,  informal supports are not

sustainable, or the family is in crisis, there must be a requirement to consider urgent, interim or temporary supports.

No family should be told, in effect, to survive the crisis first and argue about it later.

The impact on siblings and family life must not be ignored The impact of inadequate support does not stop with the participant.

It affects the whole family.

When a child has high disability-related needs and formal supports are inadequate, parents are forced to constantly supervise, manage risk, attend appointments, advocate, complete paperwork, seek evidence, fight decisions, and manage daily crisis.

This affects the sibling too.

The  sibling may lose  ordinary  family  time,  outings, calm  routines,  parental  attention,  social

opportunities and emotional security. The sibling may live around constant stress, exhaustion and crisis.

Submission 2435

This is not because the disabled child is the problem. The problem is the lack of adequate support around the child and family.

NDIS reform must require proper consideration of the family unit where the sustainability of informal supports is being relied upon.

If the system depends on parents and families providing unpaid support, then the system must assess whether that support is actually safe and sustainable.

Transport barriers can make therapy impossible to access Therapy funding is not meaningful if the child cannot practically attend therapy.

For our family, transport is not a convenience issue. It is an access issue.

The primary carer does not drive. The second parent has medical driving restrictions following major surgery. Taxis are not financially sustainable. Therapy and school access are directly affected by transport barriers.

Where transport barriers prevent a child from accessing disability-related therapy or education supports, transport should be considered as part of the functional support picture.

A plan may look adequate on paper but fail in real life if the family cannot physically get the child to the services.

NDIS reform must recognise practical access barriers, especially for young children, families without safe driving capacity, and participants whose disabilities prevent independent travel.

Reviews and appeals must not leave families in unmanaged crisis Review and appeal rights are important. But a review process does not protect a child if the child is left without adequate support while the process continues.

Families may wait weeks or months through internal review, tribunal review, evidence gathering, case conferences and negotiations. During that time, the child’s needs continue every day.

The family still has to survive.

The child still needs therapy.

Submission 2435

The risks still exist.

The parent’s mental health may deteriorate.

The second parent may be medically unable to assist.

The sibling may continue to be affected.

For young children, time matters. Development does not pause while paperwork moves through a system.

The Bill should include clear protections requiring urgent interim or temporary supports where there is evidence of significant risk, developmental harm, carer collapse, lack of informal supports, or serious access barriers.

Rights-based protections must stay central to the NDIS The NDIS must remain connected to dignity, safety, development, communication, participation, inclusion and family life.

For children, the best interests of the child must be central.

For children with significant communication impairment and developmental disability, the system must be especially careful, because the child cannot advocate for themselves.

Child A cannot write a submission. He cannot explain to decision-makers what it feels like to be unable to communicate. He cannot explain what he needs to learn. He cannot explain the risks he faces. He cannot explain what happens to his family when support is inadequate.

That is why the system must listen carefully to professional evidence and parent evidence.

Human rights and disability rights cannot be treated as decorative words. They must be built into practical decision-making safeguards.

Concerns about the Bill I am concerned that reforms focused on scheme sustainability, planning, supports, reassessment, funding and administration may unintentionally harm children and families if strong safeguards are not included.

Submission 2435

In particular, I am concerned about any changes that may:

make it harder for participants to seek reassessment when supports are insufficient;
make it easier to refuse or reduce supports without transparent individualised reasoning;
rely too heavily on standardised tools or generalised assumptions;
fail to properly consider professional evidence;
fail to protect early intervention for young children;
fail to assess carer capacity and informal support sustainability;
fail to recognise the impact of parent illness, mental health deterioration or major surgery;
fail to protect siblings and the wider family unit;
fail to consider transport barriers that prevent therapy access;
fail to provide urgent interim support while reviews and appeals are ongoing;
allow cost control to override safety, development, dignity and functional need. Fraud, misuse and poor provider conduct should be addressed. But children with profound disability related needs should not be punished for problems they did not create.

The NDIS should not become more sustainable by becoming less safe for the people it was created to support.

Recommendations I respectfully recommend that the Committee ensure the Bill includes clear safeguards requiring that:
Early intervention is protected for young children with significant developmental disability, communication impairment, functional dependence and safety risks.
1. Professional evidence must be meaningfully considered, with written reasons

explaining what evidence was accepted, rejected, discounted or not followed.

Child participants receive special protection, including proper consideration of best interests, developmental vulnerability, communication needs, safety and early learning opportunities.

Submission 2435

4.  Plan reassessment rights are preserved where supports are  insufficient,  risk has

escalated, family circumstances have changed, or informal supports are no longer safe or sustainable.

Informal support sustainability must be assessed before the NDIA relies on parents, carers or family members to carry significant disability-related support needs.
Carer health and family safety must be considered, including documented mental health deterioration, medical incapacity, major surgery, disability, lack of sleep, family crisis and sibling impact.
1. Safeguarding must apply to planning and funding decisions, not only provider

regulation or fraud prevention.

Urgent interim supports must be available where a participant or family is at risk during internal review, tribunal review or other dispute processes.
Transport access must be recognised where transport barriers prevent a participant from using therapy, school or disability-related supports.
Automated, standardised or template decision-making must not replace individualised assessment, especially for children and participants with complex needs.
Families must receive transparent reasons when professional recommendations are not followed, including reasons about therapy intensity, transport, informal supports, value for money, effective and beneficial supports, and safeguarding.
The Bill must remain consistent with disability rights and child rights, including dignity, development, safety, participation, communication, family life and meaningful access to supports.
Conclusion The NDIS should be protected for future generations. But the way to protect it is not to make it

harder for children with severe disability to access support.

A system is not sustainable if it survives by pushing crisis back onto families.

A system is not fair if professional evidence can be provided and still not meaningfully addressed.

Submission 2435

A system is not safe if a very young child can be left without adequate early intervention while parents are expected to replace formal supports they are not trained, funded, or medically able to provide.

A system is not humane if it ignores the reality that parents can love their child completely and still be beyond safe human limits.

Child A deserves the chance to learn basic communication, functional, safety and daily living skills. His family deserves the chance to live safely, not in endless crisis.

Please ensure the Bill includes strong protections for children, families, carers, early intervention, safeguarding, transparent decision-making, reassessment rights, transport access, and urgent interim supports.

Respectfully submitted,

Parent and primary carer of Child A