NDIA Accountability Project

Concerns regarding NDIS reforms impacting autistic Aboriginal children with co-occurring medical complexities

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Submission 1795

20th May 2026

to whom it may concern,

I am writing as a parent, carer and advocate with extensive lived experience navigating the National Disability Insurance Scheme on behalf of my two daughters, both of whom are NDIS participants. My daughters are Aboriginal children with autism, ADHD, sensory regulation difficulties, significant functional support needs, co-occurring medical complexities, and complex neurodevelopmental presentations, including PDA profile traits. I also advocate more broadly within the disability sector and have firsthand experience engaging with the NDIA, review processes, and the Administrative Review Tribunal.

I support the long term sustainability of the NDIS. However, I hold serious concerns regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the disproportionate impact these reforms may have on children with disabilities, carers, and families living in regional, remote, and Aboriginal communities.

My concerns are not theoretical. They are grounded in years of lived experience fighting for my daughters to access recognition, support, and basic services within systems that are already incredibly difficult to navigate.

My eldest daughter spent over five years fighting for formal recognition and diagnosis despite clear and persistent signs of disability. Like many autistic girls, her presentation was complex, internalised, and often masked. During those years we were repeatedly dismissed, redirected, or told to “wait and see” while her support needs continued to escalate.

By the time we finally received recognition and support, our family was already emotionally, mentally, and financially exhausted.

In addition to their neurodevelopmental disabilities, both of my daughters also experience co-occurring medical complexities which further impact their daily functioning, emotional regulation, participation, and care needs. Navigating multiple systems simultaneously, including disability, medical, therapeutic, educational, and behavioural supports, is incredibly complex and often overwhelming for families.

Too often these overlapping support needs are viewed in isolation by systems that fail to recognise the cumulative impact they have on children and carers.

I am deeply concerned that the proposed tightening of eligibility criteria and access pathways under this Bill will create even greater barriers for children like my daughters, particularly autistic children, Aboriginal children, children with PDA profiles, children with co-occurring medical complexities, and children whose disabilities do not fit neatly into rigid assessment models.

The proposed expectation that families demonstrate they have exhausted “appropriate treatment options” before accessing support is especially concerning in remote and regional settings because many families do not have access to those services in the first place.

Communities across the Northern Territory including Ngukurr, Minyerri and Bulman to name a few are already severely under resourced when it comes to disability supports, allied health services, specialist paediatric care, occupational therapy, speech therapy, psychology, and early intervention.

Some families are lucky to receive any consistent therapeutic support at all.

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In many remote communities there are long waitlists, fly in fly out services, workforce shortages, and limited continuity of care. Families are often required to travel significant distances simply to attend appointments or obtain assessments. Others rely entirely on telehealth despite poor connectivity and limited culturally safe service delivery.

It is difficult to understand how the answer to an already inaccessible system is to make access harder.

I also ask the Committee to genuinely consider the cultural and linguistic barriers Aboriginal families face when navigating the NDIS. If the system is difficult for me to navigate despite having a western education, advocacy experience, and an understanding of government systems, I cannot imagine how overwhelming and inaccessible it must feel for families where English may not be a first, second, or even third language, and where formal education was never prioritised due to historical and systemic disadvantage.

The NDIS is already built around complex paperwork, reports, assessments, review mechanisms, and administrative language that many people struggle to understand. Tightening access further risks excluding the very people who are already the most disadvantaged.

I am deeply concerned that Aboriginal children in remote communities will continue to fall through the cracks because their families simply cannot navigate systems designed without cultural safety, accessibility, or equity in mind.

The reality for many carers is already one of constant advocacy, crisis management, exhaustion, and burnout. We are coordinating therapies, attending appointments, responding to school issues, managing meltdowns, attending medical appointments, advocating with providers, and attempting to hold our families together while repeatedly proving our children’s disability over and over again.

The review process itself has been one of the most dehumanising experiences I have ever endured.

My family was recently forced to pursue formal review pathways in order to secure supports that were clearly reasonable and necessary for my daughter’s safety, regulation, medical care, and participation. The process was lengthy, adversarial, emotionally exhausting, and retraumatising.

At times it felt as though every aspect of our lives was reduced to evidence of dysfunction.

As parents we are routinely forced to describe our children in the worst possible terms simply to access the bare minimum supports required to keep them safe and functioning. We are expected to document every meltdown, every behavioural incident, every failure, every risk, every medical complexity, and every limitation while simultaneously trying to protect our children’s dignity, confidence, and identity.

There is nothing humane about forcing parents to repeatedly reduce their children to deficits in order to prove they deserve support.

The emotional toll of this process became so significant that I ultimately had to seek psychological support for myself because the combined weight of the review process, caring responsibilities, advocacy, and daily life became too much to carry alone.

I do not believe families should be pushed to the point of psychological distress simply for trying to secure necessary supports for their disabled children.

I am additionally concerned about increased reliance on automated decision making powers within the NDIA. Families of children with complex disabilities and medical needs require nuanced,

Submission 1795

individualised, and culturally informed decision,making processes. Disability cannot always be captured through standardised templates, tick boxes, or administrative shortcuts.

The realities of caring for children with disabilities are deeply human, deeply complex, and often unpredictable.

I also urge the Committee to consider the long term consequences of reducing flexibility within plans or limiting early intervention access for neurodivergent children. Appropriate supports do not create dependence. In many cases, they prevent crisis, school refusal, family breakdown, mental health deterioration, hospitalisation, and long term disengagement from education and community participation.

The supports my daughters require are not luxuries. They are the difference between regulation and crisis, participation and isolation, safety and risk.

I acknowledge that the NDIS must remain sustainable into the future. However, sustainability cannot come at the expense of the very people the scheme was created to support. Reforms must be evidence based, culturally informed, and genuinely co designed with disabled people, Aboriginal communities, carers, advocates, and families with lived experience.

I respectfully recommend that the Committee:

  • ensure autistic children and participants with complex neurodevelopmental disabilities and co occurring medical complexities are not unfairly excluded through tightened eligibility criteria;

  • remove or significantly clarify any “treatment exhaustion” requirements;

  • preserve flexibility within participant plans;

  • strengthen safeguards around automated decision making;

  • undertake genuine consultation with Aboriginal communities, rural and remote families, and people with lived experience;

  • improve access to culturally safe and regionally available supports;

  • ensure reforms do not disproportionately disadvantage children with fluctuating or non linear support needs;

  • improve transparency and accessibility of review pathways; and

  • extend consultation timeframes to allow meaningful community participation in reforms of this scale.

Finally, I ask the Committee to remember that behind every policy discussion, legislative amendment, and funding reform are real families already operating beyond exhaustion.

Families like mine are not asking for luxury. We are asking for dignity, safety, inclusion, and the opportunity for our children to access the supports they need to participate meaningfully in their communities, cultures, education, and futures.

Thank you for the opportunity to provide this submission.

Kind regards,