Family's experience of managing three daughters with Autism Spectrum Disorder, ADHD, and anxiety (Family or carer experience)

Submission 2672

Submission to the Senate Community Affairs Legislation Committee

Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Request: We request that this submission be published with our names withheld, to protect the privacy of our three children, who are minors.

Dear Committee Members,

Our position: We support sensible reform to keep the NDIS sustainable, but we do not believe this Bill should pass in its current form. It should be amended so that funding decisions remain driven by disability-related need and evidence, not by savings targets. This submission explains why, from the perspective of a family living these realities every day.

We are         and       from Victoria, parents of three young daughters. To protect their

privacy we refer to them here as our eldest, middle and youngest daughter.

Our eldest daughter (9) has Autism Spectrum Disorder Level 2, ADHD, and anxiety.

Our middle daughter (5) has Autism Spectrum Disorder Level 2 and anxiety, and is currently undergoing assessment for ADHD.

Our youngest daughter (2) is already displaying developmental and behavioural traits similar to her older sisters, and it appears she is on the same pathway.

This submission is not theoretical for us. Disability is not a policy discussion in our household. It is our everyday reality.

Every day we navigate emotional dysregulation, behavioural escalation, safety concerns, school challenges, therapy appointments, specialist reports, advocacy, and constant supervision. Every day we help our daughters manage a world that is often overwhelming, confusing, and exhausting for them.

Both of our older girls have Individual Education Plans and require ongoing collaboration between their school, therapists, behavioural support team, and our family. Our lives revolve around supporting our children to be safe, participate in education, regulate their emotions, develop friendships, and build the skills needed to function as independently as possible.

These are not occasional parenting challenges or personality traits. They are disability-related support needs.

Our daughters experience significant difficulties with:

• emotional regulation
• impulsivity
• executive functioning
• communication
• anxiety
• sensory processing
• behavioural regulation
• social interaction

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• transitions and routine changes

• safety awareness

• community participation

• independent functioning They currently require:

• occupational therapy

• speech therapy

• counselling

• behavioural support

• community participation supports

• school-based planning

• parent coaching

• emotional regulation supports

• ongoing supervision within the home and community These supports are not luxuries or optional extras. They are the minimum framework helping our children function safely and participate in everyday life.

Despite these supports, our family still faces significant challenges every day. Our daughters have displayed behaviours including:

• hitting and pushing family members
• throwing objects
• swearing and aggressive emotional outbursts
• running from caregivers
• emotional escalation beyond their ability to self-regulate safely Recently, our middle daughter, after becoming emotionally overwhelmed over a perceived issue involving neighbours that did not actually exist, our daughter kicked through a bedroom window. Glass entered her lower leg and she required medical assessment. This was not deliberate misbehaviour. It was a young child with significant disability-related emotional regulation difficulties losing control.

Our eldest daughter, has also demonstrated serious safety concerns, including riding onto the street late at night on a bicycle and taking her middle sister with her, without understanding the dangers involved. These are not isolated incidents. They are examples of the reality families like ours live with every day.

Sustainability cannot override need

We are deeply concerned that the current reforms increasingly focus on sustainability, informal supports, parental responsibility, and alternative support pathways without fully recognising the realities faced by families raising children with significant disabilities.

We understand the NDIS must be sustainable, and we support sensible reform. However, sustainability cannot come at the expense of children whose support needs are genuine, significant, and ongoing.

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Our concern is crystallised in the Bill itself. The original NDIS Act 2013 was built on the concept of reasonable and necessary supports. This Bill proposes to qualify that test so that supports are funded only “so far as is consistent with the financial sustainability of the scheme”. We are concerned this inverts the founding principle of the scheme: need would no longer determine support; the budget would. We ask the Committee to scrutinise this change closely and to preserve need and evidence as the primary basis for funding decisions.

Families already carry the overwhelming majority of care

One of our greatest concerns is the increasing assumption that families can absorb more care responsibilities themselves. Families already provide the overwhelming majority of care. Therapists and support workers do not provide support twenty-four hours a day, and most funded supports cover only a small number of hours each week. Everything else falls to families.

Families already provide:

• supervision
• behavioural support
• emotional regulation support
• transport
• advocacy
• school coordination
• crisis management
• sensory support
• daily living support
• safety monitoring
• emotional care Formal supports do not replace family care. They supplement it. When supports are reduced, the need does not disappear; the burden simply shifts onto families. Usually onto mothers. Usually unpaid. Usually at significant emotional, physical, mental health, and financial cost.

The cumulative impact on our household

Our own family demonstrates this cumulative impact.

has diagnosed ADHD and is currently pursuing assessment for Autism Spectrum Disorder.

suffered a significant workplace injury in 2024 and remains unable to return to work. He has undergone surgery, developed Complex Regional Pain Syndrome, experiences ongoing depression and mental health impacts, and lives with permanent physical limitations and a degenerative knee condition. During his WorkCover dispute he was terminated from employment. He now requires support himself while simultaneously helping care for children with significant support needs, and is likely to pursue ADHD and ASD assessment in the future.

Our household is not simply supporting two autistic children. We are managing disability, chronic pain, neurodiversity, mental health impacts, financial stress, safety concerns, education systems, therapy systems, and family survival simultaneously. Every day is a balancing act. This is with NDIS supports already in place.

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Decisions must be driven by need, not savings targets

We are also concerned by reports of projected reductions in participant growth and participant numbers over coming years. As parents of children with significant support needs, this creates enormous anxiety. It raises fears that autistic children may increasingly be viewed through a budget and sustainability lens rather than a genuine functional-needs lens.

We are particularly mindful that the case for this Bill rests heavily on a headline figure of roughly $37.8 billion in projected savings. We would ask the Committee to test what that figure actually represents. In our view a saving in the NDIS is not necessarily a saving to government or to the community if the underlying need simply transfers to schools, Medicare, state mental health services, hospitals, housing services, the justice system, and unpaid family carers. We are concerned this may be a transfer of cost, not a reduction in it.

Families need reassurance that decisions will be driven by disability-related needs and evidence, not savings targets.

We are particularly concerned about proposed changes involving:

• tighter eligibility requirements
• standardised functional capacity assessments
• stricter reassessment criteria
• greater emphasis on family and informal supports
• increased reliance on mainstream systems
• reduced flexibility around plan reassessments
• reduced social and community participation funding
• expanded Ministerial powers to reduce categories of supports
• the proposed movement of autistic children into alternative systems such as foundational or “Thriving Kids” supports

Reassessment and functional capacity testing

One of our strongest concerns relates to reassessment and functional capacity testing. Autistic children often learn to mask their difficulties. A child appearing calm during a short assessment does not reflect the reality seen:

• at home
• during transitions
• during sensory overload
• during emotional dysregulation
• during anxiety
• during exhaustion and burnout
• during safety incidents Any reassessment process must heavily weight evidence from families, schools, behavioural practitioners, therapists and support teams who observe the child across multiple environments over extended periods of time. A brief assessment cannot fully capture the realities of disability.

Moving children into alternative systems

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We are particularly concerned by proposals that may move autistic children into broader systems, such as foundational or Thriving Kids supports, without clear evidence that outcomes will be equal or better. We understand these are described by the Government as complementary, but we would ask the Committee to confirm exactly what is being legislated, not what is merely announced, and what evidence underpins any transition.

Our children do not need vague access to services. They need individualised supports tailored to their specific functional impairments, emotional regulation needs, behavioural challenges, communication difficulties, sensory needs, removal of participation barriers, and safety risks. Children with Level 2 autism support needs are not low-support children.

Continuity of care

One of the most important issues that appears underappreciated in current reform discussions is the value of continuity of care. For autistic children, trust, familiarity, consistency, and predictability are critical. Children often spend years building safe and effective relationships with therapists, behavioural practitioners, counsellors, occupational therapists, and support workers. These relationships become part of the child’s support network.

Disrupting these relationships to reduce costs or move children into alternative systems risks significant setbacks. For children with anxiety, emotional regulation difficulties, communication challenges, and sensory sensitivities, disruption can result in:

• increased distress
• behavioural escalation
• reduced engagement
• loss of trust
• regression in skills and progress Families spend years building effective support teams around their children. These therapeutic relationships should not be treated as easily interchangeable.

Social, civic and community participation funding

We are also deeply concerned about the announced reductions to social, civic and community participation funding. For many autistic children, community participation supports are not recreational extras. They are structured interventions that build:

• social skills
• emotional regulation
• confidence
• independence
• communication
• community participation
• safety Reducing these supports risks reducing capacity building itself.

Fragmentation and duplication

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Another major concern is the excessive layering of the NDIS system. Families repeatedly explain the same information to:

• Local Area Coordinators
• Planners
• Assessors
• Support coordinators
• Therapists
• Behavioural practitioners
• Review teams
• National Disability Insurance Agency staff
• School systems There is little continuity, little holistic understanding of the child, and little understanding of the family unit. Families repeatedly retell traumatic experiences, resubmit reports, justify supports, and relive difficult situations. This process is exhausting and inefficient. A more effective system would involve smaller, consistent case-management style teams that develop genuine understanding of children and families over time.

Early intervention is an investment, not a cost

We are also concerned that reducing access to early intervention and individualised supports may increase long-term costs to government and society. Early intervention is widely evidenced to improve developmental outcomes and reduce later support needs. Occupational therapy, speech therapy, counselling, behavioural supports, parent coaching, and community participation supports help children build skills, improve functioning, increase participation, and reduce future support needs.

Reducing support during critical developmental years may save money in the short term, but it risks increasing future costs through:

• worsening behavioural difficulties
• increased school support requirements
• increased mental health presentations
• greater crisis intervention needs
• increased long-term disability support needs
• reduced workforce participation by carers, and by the children themselves as they become adults In simple terms, reducing support does not remove need. It often increases the cost of managing that need later.

The human cost

There is also a major human cost often ignored in these discussions. When supports are reduced:

• parents reduce work
• parents leave employment
• financial pressure increases

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• mental health deteriorates
• social isolation increases
• relationships suffer
• siblings are affected
• family burnout intensifies These costs do not disappear. They simply shift elsewhere. Sustainability cannot come at the expense of children with significant disabilities and families already carrying enormous unpaid care burdens every day.

Where genuine savings should be found

If the Government wishes to improve NDIS sustainability, stronger focus should be placed on:

• provider pricing
• fraud
• administrative inefficiency
• duplication
• excessive bureaucracy
• poor continuity of care Children do not create provider inflation. Children do not design inefficient systems. Children do not profit from the NDIS. Every dollar spent on our children goes towards therapy, communication, behavioural support, emotional regulation, participation, development, and safety.

Our recommendations

We ask the Committee to strongly consider the following:

1. That no autistic child with Level 2 support needs be removed from the NDIS without a comprehensive functional assessment involving their existing therapy and support teams.

2. That there be no reduction in therapy, behavioural support, communication supports, emotional regulation supports, community participation supports, or safety-related supports for those already on NDIS.

3. That there be no transition to alternative systems without clear, peer-reviewed evidence demonstrating equal or better outcomes.

4. That the legislation recognise that families already carry the overwhelming majority of care responsibilities.

5. That evidence from schools, therapists and families be given greater weight during functional assessments and reassessments.

6. That stronger action target provider pricing, fraud, market exploitation and administrative inefficiency, rather than reducing access for children.

7. That fragmentation and duplication within the NDIA and NDIS be reduced.

8. That the legislation recognise the cumulative impact on households where multiple family members experience disability, neurodiversity, chronic illness or mental health challenges.

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9. That the Committee recognise that reducing formal supports does not remove disability — it transfers the burden onto already overwhelmed families.

We are not asking for special treatment. We are asking for recognition of reality.

Our children deserve safety. They deserve dignity. They deserve the opportunity to learn, participate, and reach their potential.

Please ensure that reforms designed to strengthen the NDIS do not unintentionally weaken outcomes for the very children the scheme was created to support.

Yours sincerely,

and

Victoria