Submission 1999

Submission to the Senate Community Affairs Legislation Committee

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

Submitted by: Parent and full-time carer of two children with Autism Spectrum Disorder (Level 3 and Level 2)

Introduction

I am the single mother and primary carer of two children aged 15 and 13 who have Level 3 and Level 2 Autism Spectrum Disorder respectively. I escaped domestic violence and currently provide 100% care for my children. I am also a senior registered nurse, but due to my caring responsibilities I am only able to work three days per fortnight.

I oppose significant aspects of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 because I believe the proposed reforms will substantially harm children with complex developmental disabilities and their families.

My lived experience before and after the introduction of the NDIS demonstrates:

• the failure of mainstream services to meet the needs of disabled children;
• the importance of early intervention and ongoing therapy;
• the dangers of poorly conducted functional assessments;
• the harm caused when supports are removed; and
• the necessity of independent review mechanisms to hold the NDIA accountable.

I am particularly concerned about provisions within the Bill relating to:

• increased reliance on automated functional impairment assessments;
• requirements to exhaust treatment options;
• restrictions on funded supports;
• reductions in therapy and community participation funding;

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 increased Ministerial powers;

 limitations on review rights; and

 the assumption that mainstream systems can replace disability-specific supports.

My family’s experiences demonstrate that these assumptions are not supported by reality.

Failures of Mainstream Services Before the NDIS

My older son began showing developmental delays at approximately 10 months of age in 2011. When I raised concerns with Child and Family Health nurses, my concerns were dismissed.

He was eventually referred to a community physiotherapist in 2012, who identified low muscle tone, but advised there was an approximately 18-month waiting list for therapy.

I was then referred to a community speech pathology service because my son had speech regressions. By the time the appointment occurred, my son was approximately 21 months old. A speech pathologist and social worker assessed us. Instead of providing therapy, they criticised my parenting style. I was five months pregnant and acutely unwell with cholecystitis at the time but was told I needed to be “more animated as a mother.”

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responses indicating autism risk. Shortly afterward, he was diagnosed with severe Level 3 Autism Spectrum Disorder, after I paid approximately $2,000 for a private assessment, as the waiting list through the public system was about two years.

These experiences are highly relevant to the Bill’s emphasis on “foundational supports” and programs such as “Thriving Kids” and “Inklings.” My experience demonstrates what happens when governments rely on parenting programs and generic mainstream services instead of providing actual therapy and specialist intervention.

Concerns Regarding Proposed Early Intervention Changes

I am deeply concerned about the proposed shift toward programs such as “Thriving Kids” in place of funded early intervention therapies.

Evidence from a Thriving Kids pilot program conducted by the Brotherhood of St Laurence reportedly showed that approximately 69–81% of participating children demonstrated either no improvement in developmental skills or developmental regression.

Despite this, the model primarily involved approximately 10 parent “coaching” sessions, while the children themselves were not provided with direct therapy services.

This raises serious concerns that the proposed reforms effectively expect parents to privately fund intensive early intervention while government-funded support is reduced.

Under current Medicare arrangements, families are generally limited to:

• 15 allied health rebates of approximately $60 each annually under Chronic Disease Management/Mental Health plans; and

• rebates of approximately $87.25 for limited assessment and therapy sessions under Helping Children with Autism arrangements.

These rebates do not come close to covering the actual cost of evidence-based early intervention. A child with Level 2 Autism Spectrum Disorder will often require:

• weekly speech pathology;

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• weekly occupational therapy;

• psychology;

• behavioural supports; and

• other interventions for many years.

My younger son, who has Level 2 ASD, has required ongoing therapy for approximately nine years.

As a single parent who cannot work full-time due to caring responsibilities, there is absolutely no way I could have afforded the therapies my children required without the NDIS.

The proposed reforms risk creating a system where only wealthy families can access adequate early intervention, while children from lower-income households fall further behind developmentally.

Early Intervention Through the NDIS Changed My Son’s Life

Before the NDIS, I spent approximately $10,000 on private occupational therapy and speech pathology despite having private health insurance and Medicare rebates.

After the introduction of the NDIS, my older son became one of the first participants in the Scheme and commenced intensive early intervention therapy.

Within three months, he began requesting food and drinks verbally for the first time.

The therapy allowed him to:

• gain communication skills;

• improve adaptive functioning;

• attend mainstream school; and

• participate in education with behavioural supports.

Without the NDIS, these outcomes would not have occurred.

The Bill’s focus on reducing therapy supports ignores the fact that early intervention can significantly improve long-term outcomes and reduce future

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support needs. Synergies Economic Consulting modelling shows the significant savings the government can make by providing Early Intervention to Autistic cchildren.

            Original     Adjusted
          Average      Average  Number    Original Total   Adjusted Total

ASD Benefit per Benefit per of Economic Benefit Economic Benefit Level Child (2013 Child (2026 Children (2013 AUD) (2026 AUD) AUD) AUD) Level 3 ASD $1,296,929 $1,799,411 237 $307,500,000 $426,637,680 (Group 1) Level 2 ASD $1,202,474 $1,668,360 711 $855,200,000 $1,186,538,354 (Group 2) Level 1 ASD $747,175 $1,036,660 237 $177,100,000 $245,715,555 (Group 3) Total — — 1,185 $1,339,800,000 $1,858,891,589

Currently 20,000-40,000 children are diagnosed with Autism in Australia per year.

NDIA Administrative Failures

When my younger son began showing developmental delays, we submitted reports from a psychologist and speech pathologist confirming he required going therapy.

However:

• his application was “misplaced” by the early childhood access partner;

• the NDIA rejected the new application because the assessor had not read the reports; and

• I had to request a review of a reviewable decision.

After obtaining a formal Level 2 Autism diagnosis, I submitted another application.

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Despite repeated calls and emails over six months, no action occurred until I lodged a complaint with the Commonwealth Ombudsman.

The process took more than a year and again cost me approximately $10,000 in private therapy expenses.

This experience raises serious concerns regarding provisions in the Bill that expand NDIA discretionary powers while weakening meaningful independent review mechanisms.

Concerns About Functional Capacity Assessments

The Bill proposes increased reliance on automated functional impairment assessments for determining eligibility and funding.

My family has already experienced the harm these assessments can cause.

During an annual review in 2017, my older son underwent a PEDI-CAT assessment administered by an NDIA planner who refused to disclose her qualifications and refused to provide the assessment results.

Despite my son having severe Level 3 autism, I was told he only had a “mild” disability and 85% of his funding was removed.

I was also threatened that seeking review could result in further cuts. That is exactly what occurred.

My son’s funding was reduced to approximately $7,000 annually despite his therapy costs exceeding $35,000 per year.

We were forced to commence proceedings in the Administrative Appeals Tribunal. The process took approximately 18 months.

During that time:

• my son’s funding was exhausted;
• services had to be cancelled; and
• I personally funded approximately $10,000 in therapy.

Following Freedom of Information requests, I obtained the PEDI-CAT results, which actually showed severe disability. The planner’s representations were false.

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Although I lodged a formal complaint, no action was taken because the NDIA claimed the matter had been “resolved” by the Tribunal outcome.

This demonstrates why independent merits review is essential.

I am deeply concerned that the Bill will weaken the ability of the Administrative Review Tribunal to properly scrutinise NDIA decisions, while simultaneously increasing the Minister’s powers and reliance on standardised or automated assessments.

Concerns About “Treatment Exhaustion” Requirements

The Bill appears to create contradictory access requirements whereby participants must:

1. demonstrate significant functional impairment; while also

2. exhausting available treatment options first.

This approach is deeply problematic.

To access treatment, people generally require a diagnosis and funding first.Many treatments for disorders which cause disabilities are either:

• unavailable in Australia;

• unaffordable; or

• unsupported by the public system.

It may also pressure people into pursuing risky medical interventions in order to remain eligible for disability supports.

My older son has experienced cyclical developmental regressions since infancy, including:

• agitation;

• insomnia;

• incontinence;

• speech and language regression; and

• cognitive decline.

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After positive behaviour support funding was removed by the NDIA during primary school, his mental health deteriorated significantly, and he eventually experienced psychosis in Year 7.

Despite clear warning signs, CAMHS discharged him after only two appointments. No blood tests or imaging were performed.

A prescribing error later resulted in my son almost receiving double the maximum recommended dose of aripiprazole because handwriting on the prescription was misread by the pharmacist.

My son could have died.

The medication is also not available on the PBS for children, who cannot be officially diagnosed with schizophrenia at that age, meaning that once the correct dose was prescribed and dispensed, I was paying about $100 per script.

Eventually, after extensive specialist involvement and my own scientific literature review, my son was treated with folinic acid after suspected cerebral folate deficiency associated with folate receptor antibodies.

The improvement has been remarkable. His speech, cognition, communication, social skills and motor skills have dramatically improved.

However:

• the relevant antibody testing is unavailable in Australia; and
• treatment costs approximately $300 per month privately.

The only way to currently test for cerebral folate deficiency would be to stop my son’s treatment for 3 months (risking regression), and subject him to a painful lumbar puncture (spinal tap). Folate receptor antibody testing only requires a blood test, which can be done during treatment with folinic acid.

When I contacted the Minister’s office requesting PBS listing of folinic acid, and folate receptor antibody testing access, I was informed it was up to private companies to pursue both.

This directly contradicts the expectation within the Bill that families must exhaust treatment options before qualifying for disability supports.

Families cannot exhaust treatments that governments refuse to fund or make available. I am currently paying over $2,500 for my children’s medications per year – even with a pension card.

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Whilst my older son has had some genetic tests through the public system, which found a genetic change of unknown significance, I would have to pay thousands of dollars for whole genome testing, to determine if my son has a genetic predisposition to neurodevelopmental disorders.

Proposed Therapy and Community Funding Reductions Will Cause Harm

I am deeply concerned about proposals to significantly reduce therapy and community participation funding.

My children cannot meaningfully participate in mainstream activities without substantial support.

Examples include:

• Scouts requiring 1:1 support;
• inability to tolerate dance classes due to sensory overload; inability to participate safely in group swimming lessons.

The only successful social participation opportunities available to them are specialist disability programs run by allied health professionals or therapy assistants.

Currently:

• my older son attends a cooking group; and
• my younger son attends a supported gaming group.

These are effectively their only opportunities to socialise outside school.

My older son has never formed friendships. My younger son has only one friend.

Removal of community participation funding will result in extreme social isolation.

The NDIA has repeatedly argued that “mainstream services” could replaceunded supports. I challenged those assertions at the Tribunal on three separate occasions, and the agency was unable to identify a single viable alternative service.

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There are no mainstream alternatives capable of replacing:

• hydrotherapy;
• speech pathology;
• occupational therapy; or
• specialist social participation programs.

Lack of Carer Supports

As a sole parent caring for two children with significant disabilities, I am already under severe financial and physical strain.

The NDIA has refused respite supports, claiming I could “get a babysitter.” This demonstrates a profound lack of understanding regarding disability care.

Babysitters do not care for large adolescent boys with moderate to severe disabilities, behavioural needs, communication impairments and mental health complexities.

My children are unable to attend Outside School Hours Care because they are considered “too big” and require support beyond what OSHC can provide.

The Bill also appears to assume that parents of children with disabilities should absorb even greater caring responsibilities, far beyond what would reasonably be expected of parents of typically developing children.

My older son is 15 years old, yet due to his disability I still need to:

• supervise him constantly for his safety;
• assist him with showering;
• prompt and assist him to brush his teeth;
• monitor his emotional regulation; and
• manage his daily living tasks.

This level of care is not comparable to ordinary parenting responsibilities for a teenager.

Parents of children with significant disabilities are effectively providing:

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  • unpaid disability support work;

  • behavioural support;

  • nursing care;

  • advocacy;

  • case management; and

  • crisis intervention around the clock.

The expectation that families can simply absorb more responsibilities while formal supports are reduced is unrealistic and unsustainable.

It places carers at significant risk of:

• burnout;

• financial hardship;

• physical injury; and

• mental health deterioration.

The Bill assumes schools and mainstream systems will absorb these responsibilities, despite:

• significant cuts to school disability funding; and

• no evidence of major investment in allied health staffing or disability infrastructure.

It has taken me five years, and the involvement of a Disability Advocate to finally get my children’s school to provide them with the support they need. They both had multiple suspensions last year, for what the school considered “aggressive” or “unsafe behaviour”, and both faced being expelled. This occurred despite the fact that their individual learning plans were not followed, and poorly trained staff were escalating their behaviour by inappropriately calling them “defiant”, telling my older son that he was “giving them a headache”, whenever he would get upset and start crying, or calling him “gross” when he exhibited disinhibited behaviours such as nose-picking. The school’s only strategy was to remove my children from the classroom, which made them even more upset, and then contact me to take my children home. These are the issues many children with neurodevelopmental disabilities – and their parents currently face, and the expectation that the

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The education system will somehow support the 160,000 children, who will be removed from the scheme is completely unrealistic.

Concerns Regarding Ministerial Powers and Independent Review

I am extremely concerned about provisions that expand Ministerial powers while limiting independent review.

The Administrative Appeals Tribunal, now the Administrative Review Tribunal, has been the only mechanism capable of holding the NDIA accountable in my family’s experience.

Without Tribunal intervention:

• my children would have lost essential supports;
• therapy would have ceased; and
• their developmental outcomes would have deteriorated significantly.

The proposed reforms risk replacing meaningful independent scrutiny with automated reassessments and discretionary decision-making controlled by the Minister and the NDIA itself.

This creates substantial risks for vulnerable participants and undermines procedural fairness.

Recommendations

I urge the Committee to recommend that the Bill be amended to:

1. Preserve full independent merits review powers of the Administrative Review Tribunal.
2. Prevent arbitrary or blanket therapy funding reductions.
3. Prevent blank reductions to community participation funding.
4. Ensure functional assessments are transparent, evidence-based and conducted by appropriately qualified clinicians.
5. Require participants to receive copies of all assessments used in decision-making.

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6. Prevent the NDIA from relying on unsupported assumptions regarding “mainstream supports.”

7. Ensure treatment exhaustion requirements only apply where treatments are:

• clinically appropriate;

• evidence-based;

• publicly accessible; and

• affordable.

8. Increase investment in actual mainstream disability services before removing NDIS supports.

9. Expand respite and carer support for sole parents and high-needs families.

10.Ensure children with complex autism continue to have access to intensive therapy and specialist social participation supports.

Conclusion

My children’s lives improved because of the NDIS.

Before the Scheme, we experienced delayed diagnosis, dismissal by professionals, long waiting lists, unaffordable therapy costs and harmful assumptions about parenting.

The proposed reforms risk returning families to exactly that system.

The NDIS is not failing because children like mine receive therapy, behavioural supports or community participation supports. The major cost pressures within the Scheme are more appropriately linked to provider fraud, administrative inefficiencies, outsourcing of services to private contractors, and adversarial decision-making processes within the NDIA itself.

In my family’s experience, NDIA staff have repeatedly made decisions to reduce funding without properly reading allied health reports or recommendations from treating professionals. Those decisions then force vulnerable participants into lengthy legal appeals through the Administrative Review Tribunal. The government subsequently spends enormous amounts of

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public money fighting disabled participants and their families, including tens of millions of dollars annually on external legal costs, rather than properly assessing participants’ needs in the first place.

Instead of targeting children with disabilities and reducing essential therapies and supports, reforms should focus on improving administrative accountability, reducing wasteful legal disputes, addressing fraud, ensuring decision-makers are appropriately qualified, and investing in genuine evidence- based supports.

I urge the Committee to carefully consider the real-world consequences these reforms will have on children with significant disabilities and the families who care for them.