Complex health needs and disabilities arising from Congenital Rubella Syndrome

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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:

  • Date: 30 May 2026
  • Publication: I consent to this submission being published with my name.

I am making this submission in the context of being the NDIS Nominee for redacted, a woman living in South Australia with complex health needs and multiple disabilities, primarily arising from Congenital Rubella Syndrome. I am also a member of redacted Circle of Support.

redacted is in her mid 50’s and is deafblind, and has psychosocial needs which are under the

  • cared for by a psychiatrist and psychologist.
  • experienced trauma and violence while living in -State institutional care as a young adult, and this -has affected (and continues to affect) her -capacity to build positive interpersonal -relationships and maintain behavioural self- -control.

For the last 30 years, has been -supported by the same small NGO to live in her -own home, rented through a community housing -association. During this time, support -has stabilised from an initial 2-staff x 24/7, to 1 -staff x 13 hours per day x 7 days pw. -has a strong Circle of Support and with highly -intentional support has developed her own small -business selling packaged dried fruit to cafes.

Several pieces of this Bill concern me for

  1. The Minister can cut plan by

Instrument, with no review (s 34A). The first cut is to social and community participation, phased in from 1 October 2026 as plans renew. The same power can apply to any support category to any level in future. Also, “changes to funding as result of support determinations are not subject to merits review” (¶ 285).

    NDIs support is structured around in-

home support together with 20 hours per week of social and community participation funding (4 hours x 5 days per week). These 20 hours per week are not an optional extra, but are critical to the structure of her week and to her physical and emotional wellbeing. Some of redacted funding is used to support her business delivery to her customerase, which provides regular interaction with other community members, and brings a sense of pride in her work role. also attends weekly exercise physiology sessions, goes

  • shopping, and attends other regular social

  • activities such as church (where she is a highly

  • regarded volunteer) and local craft groups.

  • She is also regularly supported to a number of

  • ongoing health appointments.

  • Removing these supports would leave

  • isolated and alone for up to 20 hours per week,

  • without assistance as well as behavioural

  • support and oversight, which could undo years

  • of progress and place her at serious risk,

  • including for self harm eg redacted has a

  • pattern of obsessively ‘picking’ her skin (fingers,

  • soles of her feet etc) which can cause serious

  • health outcomes.

  • Suggestion 1: Amend s 34A to require that any

  • percentage reduction be preceded by mandatory

  • co-design, or at the very least, consultation with

  • the disability community, and that affected

  • Participants retain individual merits-review rights where the reduction produces a harmful change in their plan.

Suggestion 2: Amend s 34A so that any percentage reduction to a support category cannot apply to participants whose plan funding for that category reflects high or complex support needs, and participants with intensive 1:1 support requirements. Also, provide an automatic exemption mechanism so that a uniform percentage reduction cannot produce unsafe gaps in supervision or support.

  1. The “whole of person” approach is being narrowed (s 34(1)(aa)). Section 34(1)(aa) adds the word “directly” — supports become fundable only if the need arises “directly” from a qualifying impairment. For redacted, whose disabilities interact indivisibly — including physical and
  • psychosocial, sensory and cognitive - that interaction may stop being funded.

  • Suggestion 3: Delete the word “directly” from s 34(1)(aa), restoring the whole-of person approach achieved in the 2024 amendments.

    1. Plans auto-renew and unspent funds are not rolled over (s 50A). From 1 February 2027, when a plan ends it is automatically renewed for 12 months by operation of law - and is not subject to merits review (EM ¶ 352). But the Bill makes no distinction between one-off funding may have already used and one-off funding she is still waiting on. On the reading of s 50A(2)(b), that funding disappears at the plan end date. The variation power in s 47A cannot rescue it - variations adjust supports that are in the plan; they don’t restore supports stripped from it by operation of law.
  • Suggestion 4: Amend s 50A(2)(b) so that one-off funding which has been quoted, ordered or otherwise actioned at the plan end date carries over until the support is provided and claimed, or 12 months after renewal, whichever is earlier.

    1. Asking for an unscheduled reassessment becomes much harder (s 48A). The Agency now has 90 days instead of 21 to decide, and the “deemed decision” safety net is gone, and the change must be “significant and ongoing” - with informal-supports changes only counting if “unanticipated.”\n\n- Suggestion 5: Retain the 21-day decision
      timeframe for unscheduled reassessment requests, restore the “deemed decision” safety net for misse ddeadlines, and remove the “unanticipated” quailifier on informal-supports
  • changes.

  • There is also no emergency reassessment pathway. The Bill treats all unscheduled reassessments the same. But if support arrangement has collapsed, or her housing is at risk, or her behaviour support needs have escalated, or she is facing an immediate safety risk, 90 days can allow significant harm to happen to her.

  • Suggestion 6: Insert into s 48A a separate emergency reassessment pathway with a statutory 14-day decision timeframe, available where the participant, a nominee or a treating practitioner certifies that the participant faces an urgent safety, housing, behavioural or support- breakdown risk.

    1. Section 9B introduces a new “functional

capacity“ test. The EM is explicit that it applies

to “all current participants in the NDS as well as an anyone who applied to the NDIS previously or appliess in the future” (¶ 143). From 1 January 2028, can be reassessed.

Suggestion 7: Delay the commencement of the

ns9B test until the assessment tool has been -designed, consulted on, piloted, tested/ evidenced and made public.

I request that the Committee consider these suggestions with vulnerability, history of trauma, and high support needs in mind. It would be devastating for the good life, centred in community, that has been supported to achieve in the last 30 years to be placed at risk.

Thank you.

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