Impact on children with ATAXIA (HSP)

‹ PrevPage 1 of 7 · Source p. 1Next ›

Submission to the Senate Community Affairs Legislation Committee

My name is and I am the mother of three children with ATAXIA (HSP) late onset age 49. With this in mind, this is my submission to the Senate Community Affairs Legislation Commitee on the The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

What changes for NDIS participants:

Getting into the NDIS may become harder

What changes?

The Bill introduces a new definition of functional capacity. Instead of looking primarily at how you function in your everyday life with your usual supports, asessments may focus on your ability to perform activities:

  • without help from other people
  • without assistive technology
  • without home modifications
  • while excluding environmental factors as much as possible.

Why this matters

The exact assessment rules will be made later. That means future governments could change the assessment methodology without passing another Act of Parliament.

Who could be affected?

  • new applicants
  • children entering the Scheme
  • people applying under early intervention
  • participants whose eligibility is reviewed.

It will become harder to ask for a plan reassessment

Currently participants can request a reassessment if circumstances change.

Under the Bill you must show there has been:

  • a significant
  • ongoing
  • change in disability support needs

and that change must relate to:

  • worsening functional capacity, or
  • major changes to living arrangements, work, education or informal supports.

The CEO could refuse to reassess unless these legal conditions are met.

  1. Reassessment decisions could take much longer

The current decision timeframe of 21 days becomes 90 days for many reassessment requests.

That means participants could potentially wait much longer before knowing whether their plan will even be reviewed.

  1. Plans may renew automatically

Instead of every plan ending with a reassessment:

  • many plans will automatically renew
  • no planning meeting may occur
  • no new statement of supports is required.

Most funding simply carries over.

Some temporary supports may disappear automatically.

  1. Automatic renewals are not reviewable decisions

This is one of the biggest legal changes.

Normally participants can seek review of many NDIS decisions.

Page 3

However, the automatic renewal itself is not considered a reviewable decision.

You can still challenge earlier decisions, but you cannot challenge the fact that your plan renewed automatically.

The Minister gains new power to reduce funding

The Minister could reduce funding for certain categories of supports across classes of participants.

Examples include:

  • community participation
  • improved daily living supports

The reductions would occur through a legislative instrument rather than by changing every individual plan.

Although some support categories would be excluded, participants could still experience reductions.

Financial sustainability becomes a major decision-making principle

Throughout the Bill there is a stronger emphasis on protecting the long-term sustainability of the Scheme.

Decision-makers must consider:

  • sustainability
  • efficient use of funding
  • equitable distribution across participants.

This shifts the balance somewhat from focusing solely on an individual’s reasonable and necessary supports.

Greater focus on “value for money”

When deciding whether supports should be funded, the CEO must consider:

  • Whether cheaper alternatives exist
  • Whether leasing equipment is preferable to buying
  • Maximum funding amounts
  • Maximum support intensity
  • Worker-to-participant ratios.

Participants may increasingly be offered the lowest-cost option that is considered appropriate.

  1. Stronger evidence requirements

Supports will increasingly need evidence that they are:

  • Effective
  • Beneficial
  • Supported by published research.

Where evidence is limited, funding may become more difficult to obtain.

This could particularly affect:

  • Innovative therapies
  • Emerging treatments
  • Less common disability supports.
  1. More emphasis on family and informal supports

For children especially, the Bill states there is a presumption that parents should provide substantial care.

The CEO must consider whether requested supports are replacing care that would reasonably be expected from parents.

For adults, greater weight is also given to:

  • Family
  • Carers
  • Informal networks
  • Community supports

before replacing them with funded supports.

11. Supports provided by other systems may not be funded

The CEO must consider whether a support should instead be provided by:

  • health
  • education
  • employment
  • another government program.

Participants may need to seek support from those systems before the NDIS will fund it.

12. Participants who cannot be contacted face new risks

If the NDIA cannot contact a participant after multiple documented attempts:

  • plans may be suspended
  • participant status may eventually be revoked.

The Bill does include safeguards requiring repeated contact attempts over several months.

13. More anti-fraud measures

Most participants will not notice these changes directly.

The Bill strengthens:

  • provider registration
  • record keeping
  • information gathering
  • civil penalties
  • fraud investigations.

These changes mainly affect providers and plan managers.

14. An independent review is required

The Bill requires an independent review examining:

  • participant outcomes
  • access to the NDIS
  • review and appeal rights
  • provider market sustainability
  • interaction with foundational supports.

The review report must be tabled in Parliament.

  • Ministerial power to reduce funding – The Bill would allow the Minister, by legislative instrument, to reduce funding for certain groups of supports in order to promote the Scheme’s financial sustainability. It also expressly states that funding may become less than the total cost of reasonable and necessary supports.

  • Automatic plan renewals – Rather than requiring a reassessment before expiry, many existing plans would automatically renew, with some changes made by legislative instrument rather than through an individual planning process. The legislation also provides that these renewals are not reviewable decisions which is concerning.

  • Greater emphasis on financial sustainability – The Bill amends the objects of the Act and introduces new principles requiring the CEO to consider the Scheme’s financial sustainability alongside participant needs when making decisions, whereas fraudsters have squandered their money as no real oversight..

  • Changes to “reasonable and necessary” supports – New provisions require greater consideration of value for money, comparable lower-cost supports, research evidence, family responsibilities (particularly for children), and whether supports should instead be provided through other government systems.