NDIA Accountability Project

Angelman syndrome diagnosis and functional capacity assessment

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SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE

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

Submitted by: Relationship to NDIS: Father of , an NDIS participant with an interim diagnosis of Angelman syndrome, accepted by a clinical geneticist and paediatrician Date: 28 May 2026 Contact: vipinyadav1311@gmail.com

1. Introduction

My son, has been diagnosed with Angelman Syndrome a rare genetic disorder caused by loss of function of the UBE3A gene on chromosome 15. It results in severe to profound intellectual disability, absent or severely limited speech, seizure disorder, and significant motor impairment. There is no cure. The condition is lifelong, total, and irreversible.

What he has right now is a critical early intervention window, a family fighting hard to use it, and a future that depends entirely on whether the systems around him hold.

We make this submission because the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 proposes structural changes that, if passed in their current form, would directly undermine our ability to access the supports needs during the most important years of his development. We write not to oppose reform in principle, but to ensure the Committee understands what specific provisions of this Bill mean in practice for families like ours.

2. Angelman Syndrome and the Original Purpose of the NDIS

Angelman syndrome is precisely the kind of condition the NDIS was designed to support. It is permanent, present from birth, and involves significant functional impairment across every domain of daily life - communication, mobility, self-care, behavior, and safety. There is no trajectory toward independence without intensive, sustained, individually tailored support. There is no developmental pathway that reduces the need for funded assistance over time.

People with Angelman syndrome cannot advocate for themselves in the way the NDIS review and planning system expects. They cannot explain their needs to a planner, challenge a funding decision, or navigate a reassessment process. That structural reality means the system must be designed with them in mind from the outset, not retrofitted after design decisions have already been made.

   represents the original intent of this scheme. Any provision that treats his needs as comparable to those of participants with mild, episodic, or recovery-oriented disability is a provision built on the wrong assumptions.

3. Schedule 1, Part 1 — The Treatment Requirement for Permanence

The Bill introduces a requirement that an impairment is only considered permanent if all appropriate treatments available in Australia have been tried, regardless of cost or location. For Angelman syndrome, this creates unnecessary ambiguity. The condition is caused by a genetic mutation with no curative treatment, yet the provision could allow its permanence to

Schedule 1, Part 1 — Functional Capacity Assessed Without Supports

The Bill requires functional capacity to be assessed without assistive technology, home modifications, or help from other people, to establish a baseline of underlying need. While we understand this intent, it creates a contradiction when read alongside Part 6, which requires the NDIS to consider parental responsibility and informal supports in funding decisions.

The result is that functional capacity is assessed without family and carers, but funding is reduced because those same supports exist. Participants are assessed as if alone and funded as if supported. The Bill does not explain how these positions are consistent, and we ask the Committee to require that explanation before it proceeds.

For , this is not theoretical. As his primary carers, we provide continuous supervision, overnight monitoring, communication support, and implement all allied health programs. The functional capacity assessment would reflect his true needs. However, under Part 6, funding may then be reduced because we are available to meet those needs. This creates a system that correctly identifies his disability but uses our presence to justify not funding it.

From October 2026

The Bill schedules a 50% reduction in funding for social, civic, and community participation supports, and a 10% reduction in capacity building daily activity budgets.

For a childlike , the capacity building daily activities budget funds early intervention therapies- speech, occupational therapy, physiotherapy, and behaviour support. These are essential, evidence-based supports that drive improvements in communication, function, and quality of life in Angelman syndrome. The early intervention window is time-limited; missed gains cannot be recovered later at the same cost or with the same impact.

A 10% reduction will directly reduce therapy frequency, delay progress, and compound poorer outcomes over time. The government has not demonstrated that this cut has been assessed against its own early intervention principles. We ask the Committee to require that modelling before this provision takes effect.

The 50% reduction in social, civic, and community participation supports will, as grows, determine whether meaningful participation is possible at all. For a non-verbal child who relies on skilled support workers to access the community, this is not a marginal cut - it removes the practical means of inclusion.

Part 6 — Parental Responsibility Provisions

We are concerned about Part 6, which draws a distinction between parental responsibility and NDIS-funded support. In the context of Angelman syndrome, this is not a clear boundary but a mechanism for reclassifying and removing necessary support.

Caring for is not ordinary parenting. At eighteen months, he requires constant supervision because he cannot recognise danger, protect himself from harm, or communicate distress in typical ways. Overnight monitoring is a medical necessity, not a parental choice. Communication support is not routine care but specialised intervention requiring professional input and consistent, structured implementation.

This level of care will not lessen as he grows. Developing communication through AAC and similar systems requires trained practitioners working closely with families across daily life. This goes beyond what any family can reasonably sustain alongside work, health, and other responsibilities. It is precisely the type of support the NDIS was designed to fund.

Part 6 risks making this level of care invisible by treating it as ordinary parenting, removing it from funded support and shifting the burden onto families already at capacity.

There is also a clear gender impact. As is common in families with children with significant disability, we have reduced our paid work to meet ’s needs. Part 6, combined with cuts to participation supports, will intensify this pattern. The consequences - reduced income, superannuation, career progression, and long-term financial security - are predictable. We ask the Committee to require a gender impact assessment of Part 6 before the Bill proceeds.

8. Communication Disability and the Absence of Adequate Safeguards

  has no functional speech. He communicates through facial expression, gesture,

vocalisation, and the kind of attuned reading that develops only through sustained daily contact with consistent carers. He cannot participate in a planning meeting. He cannot tell a planner what he needs. He cannot flag when a decision about his plan is wrong.

This is not a temporary gap that early intervention will close. For most people with Angelman syndrome, severe communication disability is a permanent feature across the lifespan. Any system that makes decisions about their funding is a system they can never directly access.

Summary of Recommendations

We respectfully ask the Committee to recommend:

  • That the Bill be amended to exempt from the treatment requirement for permanence any condition arising from a genetic or chromosomal cause for which no curative treatment currently exists, where the condition has been accepted by a clinical geneticist or paediatrician.
  • That the internal contradiction between the functional capacity assessment methodology in Schedule 1, Part 1 and the parental responsibility provisions in Part 6 be resolved before the Bill proceeds — specifically, that the government be required to explain and reconcile the use of family absence in assessment against family presence in planning decisions.
  • That children under seven with confirmed or interim diagnoses of permanent neurogenetic conditions be exempt from the tightened unscheduled reassessment threshold, and that a 21-day response timeframe be retained for this cohort.
  • That the government produce and publicly test the modelling used to justify the 10 per cent reduction to capacity building daily activity supports against its own early intervention principles before that cut takes effect.
  • That Part 6 parental responsibility provisions be revised to exclude supports that go beyond ordinary parenting, with criteria developed through co-design with families of children with profound intellectual disability.
  • That a gender impact assessment of Part 6 be required before the Bill proceeds.
  • That no changes under this Bill affecting non-verbal or severely communication-impaired participants take effect until independent advocacy and review infrastructure is fully operational.