NDIA Accountability Project

Harm to autistic son and family due to NDIA processes

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Executive Summary

This submission outlines how NDIA decision-making, administrative processes, and policy rigidity have caused significant harm to my autistic son, to me as a disabled parent, and to our family unit.

Over five years, NDIA failures have contributed to:

  • developmental regression
  • loss of functional literacy
  • school disengagement
  • delayed access to essential supports
  • financial collapse
  • my own health deterioration
  • the breakdown of my marriage
  • increased long-term support needs for my son

These outcomes were not caused by disability. They were caused by system design, policy settings, and administrative dysfunction.

The Bill, as drafted, would expand NDIA discretionary power without addressing the systemic failures that caused this harm.

Background: Our Early Experience with the NDIS

My son received a Global Developmental Delay diagnosis, but no one informed us that this made him eligible for the NDIS. We paid $25,000 out of pocket for a year of weekly speech and occupational therapy before we even knew support existed.

When he later received an ASD Level 2 diagnosis, the NDIA failed to process his eligibility within the legislated timeframe. I had to escalate to Ministers’ offices before the NDIA would act.

His first plan was adequate. Every plan since has been a rollover, with no meaningful discussion, no recognition of changing needs, and no consideration of our family’s capacity.

Administrative Burden and Procedural Failures

NDIA processes have been:

  • inaccessible
  • contradictory
  • slow
  • unresponsive
  • procedurally unfair
  • traumatising for a disabled parent

Examples include:

  • contacting the LAC six months before reassessment, yet the plan was rolled over because of their delay in providing clear responses resulted in the FCA not being prepared in time
  • being discouraged from requesting a reassessment because it would move us to PACE
  • sending a detailed email only to have the LAC ask questions I had already answered
  • receiving calls from unknown numbers, which is a known trigger for me
  • the assessor not having the correct documents because the LAC sent a draft version
  • waiting weeks for follow-up
  • the NDIA changing our plan from self-managed to plan-managed against my explicit wishes

This last decision alone diverts over $10,000 of my son’s funding to administration — money than could have gone directly to his supports.

  1. Impact on My Health, Employment, and Family Stability

The cumulative stress of NDIA processes contributed to:

  • undiagnosed POTS episodes
  • losing my job
  • over $50,000 in credit card debt
  • over a year without the capacity to apply for welfare
  • my husband working full-time while caring for two people
  • the eventual breakdown of our marriage

At no point did any NDIA staff member ask whether I needed:

  • reasonable adjustments
  • support to participate
  • help navigating the process
  • trauma-informed communication

The only “support” offered was a tissue from an LAC and being shown a wall of brochures.

This is not support. It is performative care.

  1. Impact on My Son’s Development and Mental Health

4.1 Loss of Effective Supports

My Son’s Experience with SPELD SA

My son made progress with SPELD SA, which was:

  • half the price of a speech pathologist
  • twice as effective for him
  • the only literacy support he ever connected with

NDIA policy changes meant SPELD SA could no longer be funded because they were deemed “education.” Both practitioners he connected with left — likely because NDIS funding was withdrawn.

Dietary support was also removed, despite written evidence linking his food sensitivity to autism.

Assistive technology was delayed so long that he lost interest.

Psychology took years to access, despite the high suicide risk in autistic teens.

Refusal to Fund Supports for Auditory Processing Disorder (APD)

My son has clear and documented auditory processing difficulties, which significantly affect his ability to learn, follow instructions, regulate behaviour, and participate in school. APD is a well-established comorbidity in autistic children and directly contributes to literacy delays and school disengagement.

Despite this, the NDIA refused to fund APD-related supports because “that is not his eligible disability.”

This decision:

  • ignored clinical evidence
  • ignored functional need
  • ignored the relationship between APD and autism
  • ignored the impact on literacy and school engagement
  • increased long-term support needs
  • increased the burden on our family

This is a clear example of diagnostic gatekeeping overriding functional need.

Developmental Regression

Since losing these supports, my son has:

  • halted literacy progress
  • lost confidence
  • lost motivation
  • lost trust in interventions
  • reduced school attendance to part-time
  • become disengaged from learning

He now:

  • avoids reading entirely
  • asks us to read everything for him
  • does not write at all
  • avoids holding a pencil or pen
  • avoids drawing
  • receives no homework because he cannot access it
  • becomes angry if pressed
  • says “I just can’t do it”

This is functional collapse, not preference.

4.4 Loss of Independence and Community Participation

Because he cannot read or write, he:

  • cannot attend holiday programs
  • cannot attend camps
  • cannot participate in age-appropriate activities
  • must be chaperoned everywhere
  • cannot navigate community spaces safely
  • avoids or cannot access many environments

This is a direct result of NDIA decisions that removed effective supports and delayed essential interventions.

5. Increased Parental Burden and Reduced Capacity

Because of his literacy regression, we must:

  • read all instructions
  • read all signs
  • read all school communication
  • write everything for him
  • scaffold every task
  • interpret every environment
  • avoid activities he cannot access

This is a full-time accessibility workaround that the NDIA has never acknowledged or supported.

The NDIS Act requires the NDIA to consider:

  • the sustainability of the caring arrangement
  • the wellbeing of the family
  • the capacity of informal supports

In our case, the NDIA did the opposite.

  1. NDIA Recommendations That Are Unusable or Unlawful

We explored smart glasses as assistive tech on suggestion from our support coordinator. They require a social media subscription, which is illegal for children under 16.

The NDIA’s systems recommended a support my son cannot legally use.

This demonstrates a profound disconnect between NDIA decision-making and real-world constraints.

  1. Systemic Failures Demonstrated by Our Experience

Our story illustrates systemic issues that the Bill does not address and may worsen:

  • rigid funding categories that block effective supports
  • delays that cause developmental windows to close
  • administrative burden that disables parents further
  • lack of trauma-informed practice
  • failure to meet legislated timeframes
  • failure to consider informal support capacity
  • failure to provide reasonable adjustments
  • failure to recognise functional needs
  • plan changes made without consent
  • supports recommended that are unusable or unlawful
  • diagnostic gatekeeping overriding functional need

These are not isolated incidents. They are structural.

  1. Concerns About the Bill

The Bill expands NDIA discretion without:

  • improving accountability
  • ensuring evidence-based decision-making
  • requiring trauma-informed practice
  • mandating reasonable adjustments
  • protecting access to effective supports
  • addressing administrative failures
  • safeguarding early intervention
  • preventing harm to families

My lived experience shows what happens when the NDIA already has too much unchecked power.

Giving the Agency more power without fixing the underlying system will increase harm, not reduce it.

  1. Recommendations

Based on lived experience, I recommend:

  • mandatory trauma-informed practice for all NDIA and LAC staff
  • legislated timeframes with consequences for non-compliance
  • a clear, accessible pathway for disabled parents to request adjustments
  • recognition of functional needs, not just diagnostic categories
  • funding flexibility for supports that work
  • prohibition on plan changes without informed consent
  • independent oversight of administrative decisions
  • a requirement to consider the sustainability of the caring arrangement
  • a requirement to consider the wellbeing of disabled parents
  • a requirement to consider the long-term developmental impact of delays

These changes would prevent the kind of harm my family has experienced.

  1. Conclusion

The NDIS was meant to support families like mine. Instead, NDIA processes have:

  • harmed my son
  • harmed my health
  • harmed our financial stability
  • harmed our family unit
  • increased long-term system costs

The Bill, as drafted, risks entrenching these failures.

I ask the Committee to consider the real-world consequences of expanding NDIA discretion without addressing the systemic issues that have already caused so much preventable harm.