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Submission to the Senate Community Affairs Legislation CommitteeMay 2026

National Disability Insurance Scheme Amendment Bill 2026

Over one week in May 2026, ANPA surveyed 478 neurodivergent families across every state and territory about the proposed Bill. This is what they told us.

478 Australian families on the National Disability Insurance Scheme Amendment Bill 2026

Statement 1 of 4. 478 families spoke.

States & territories
8/8
Very concerned
93.3%
ANPA position
Oppose

Listen first. The data follows.

Download submission (PDF)

Source: ANPA community survey, 478 responses, May 2026.

Begin

Section 01 - The people behind the numbers

Not statistics. Families.

478 responses. Every state and territory. Tap a state to hear from it.

Western Australia

We haven't been meaningfully consulted, and none of us want this.

- Parent & disabled person, WA

Responses
50
National total
478
Concerned
93.3%

Section 02 - Distribution of responses

126 federal electorates. 461 households on the map.

From 478 total responses. 17 respondents chose not to share a postcode and are not plotted.

Each dot is a federal electorate. Search a postcode or electorate name to zoom in, or drag and scroll to explore. Hover or tap to read verbatim comments.

2916141313121099
Drag to pan · scroll to zoom · 1.0×n = 461 across 126 electorates

VIC - Federal electorate

Casey

29 households responded from this electorate.

What respondents flagged

  • Changes to who qualifies for NDIS support
  • Families being expected to provide more unpaid support
  • Automated computer systems or AI being involved in disability support decisions
  • Important scheme rules being decided later instead of being written into law now
  • Narrower rules about what the NDIS will fund
  • Making it harder to change plans when circumstances change
  • Changes to early support for children
All electorates by response count

Section 03 - A rare consensus

When 478 families agree this strongly, it is no longer noise.

Source: ANPA community survey, 478 responses across all 8 states and territories, May 2026.

01 / 05
97.9%

are concerned that changes to how support needs are assessed could make it harder for neurodivergent families to qualify.

Each person is an individual. You need to look at each case individually and not treat everyone as needing the same level of funding.

- Parent of an NDIS participant, VIC

02 / 05
94.8%

foresee increased parent burnout if the Bill proceeds.

I am burnt out, tired, currently sick, can't work, lost my sense of self worth. Yet as a woman, expected to do more. I just can't do more. I am done.

- Parent & neurodivergent person, VIC

03 / 05
92.7%

foresee worsening mental health impacts.

We are already at our limit. Without support it would feel impossible.

- Parent, disabled & neurodivergent, VIC

04 / 05
82.4%

fear families will be expected to provide more unpaid support labour.

It is unfair and un-Australian to expect the burden and cost of care to shift to parents and carers.

- Parent & sibling of an NDIS participant, QLD

05 / 05
45.2%

fear increased child self-harm or suicide risk if supports are reduced.

Who will be held accountable when people die as a result of this Bill?

- Parent & neurodivergent person, QLD

Section 04 - The transfer

When support disappears,
the work does not.

Each block is one hour of weekly support. Scroll - hours cut from the funded column transfer, unpaid, onto the family.

20 of 20 funded support hours remain. 0 hours per week have transferred to unpaid family labour - 0 hours per year per carer, roughly 0 million hours nationally, worth $0.0 to $0.0 billion every year.

Shift just 1,040 hours a year back onto each female primary carer of a disabled child or young person and that is roughly 0M hours of unpaid labour nationally, worth about $0.0B-$0.0B every year. The saving has not removed the work. It has moved it onto mothers.

Section 05 - A day in the life

Legislation, translated into a Tuesday.

Composite stories from survey themes. Names invented. Lives real.

Composite story - regional Queensland

Aunty May & Jay

Six hours on the road for forty-five minutes in a room.

Aunty May is 62 and the primary kinship carer for her grandson Jay, 8, who is autistic and has limited speech. The nearest paediatrician taking new NDIS reviews is two and a half hours away.

  1. 5:40 am

    Pack the esky, the AAC tablet, the headphones. Jay does best if the car is already running when he wakes.

  2. 8:40 am

    Arrive early to walk a lap of the carpark. The waiting room fluoros are a known trigger.

  3. 10:15 am

    Forty-five minutes with the paediatrician. The report will take six weeks.

  4. 5:50 pm

    Home. Aunty May carries Jay up the porch steps asleep. Her knees are not what they were.

  5. 9:40 pm

    The new functional capacity questionnaire asks her to rate Jay on a numeric scale she does not recognise.

Walk in our shoes for a week. They do not understand.
- Kinship carer of an NDIS participant, QLD (verbatim from the survey)

Relevant provision

Section 9B of the NDIS Act 2013 (Cth), as inserted by the Bill, allows remote and automated reassessment without local or environmental context.

Survey finding

47% of regional respondents named travel as a primary burden. Multiple families reported drives of more than 3 hours each way to see a disability-competent clinician.

Section 06 - Follow the dominoes

One change to assessments.
Seven downstream consequences.

Percentages from ANPA community survey (478 responses, May 2026). Qualitative findings drawn from free-text responses across every state and territory.

Section 07 - What families are most worried about

Six concerns. Said again and again.

Section 08 - The human voices

In their own words.

You do not realise - you have made the future quite terrifying. You need to see us as people, as individuals.

- Respondent, QLD

01 / 12

Section 09 - The qualitative library

Every voice that consented. De-identified. Verbatim.

266 open responses from participants, parents, carers, siblings and grandparents who explicitly consented to be quoted. Names, contact details and identifying numbers removed.

Browse by your state

266 of 266 responsesSource: ANPA 2026 community survey
  • That NDIS cuts are increasing a rising danger of physical safety in our family. I am in danger of being killed or seriously Injured by my child due to decreased NDIS funding
    Parent of an NDIS participant · Participant yourselfVIC
  • Investing in a strong NDIS also has flow-on a benefit to all Australians – for every dollar spent on the NDIS, the scheme delivers $2.25 back into Australian communities.
    Parent of an NDIS participant · Participant yourselfVIC
  • Early intervention via NDIS had helped my tween stay in contact with her peers socially and physically despite her disabilities and without continued support she will lose all of this progress and I fear will not remain in mainstream education
    Parent of an NDIS participantVIC
  • You are seriously impacting social cohesion and creating serious future economic implications.
    Parent of an NDIS participantVIC
  • Real people with real lives will be drastically affected by these changes. If you need more money in your budget, tax billionaires and corporations more appropriately.
    Parent of an NDIS participant · Participant yourselfWA
  • Ndis participants and their families are people, not scape goats, not burdens, not villians. People that deserve to be treated with dignity by a system that is supposed to provide support. Not make it harder to live.
    Parent of an NDIS participantVIC
  • Disability is not a choice. Ensuring equal access and supported access to community and society should be available to all including disabled people.
    Parent of an NDIS participantVIC
  • Build the lifeboats before sending people overboard. Services have been severely underfunded for a decade due to private companies due to snapping up NDIS money.. any gaps in adequate intervention or family support will have long-lasting impacts.
    Parent of an NDIS participantVIC
  • I am a late diagnosed mum at 26. I didn’t ask to be born autistic and yet I am and I fight for support for myself because my parents didn’t and I now fight for my kids. Autistic people aren’t going anywhere so stop making them suffer.
    Parent of an NDIS participant · Participant yourselfNSW
  • Child in autistic burnout & can't go to school/leave house. I'm a low-income single parent; had to reduce work. Too scared to apply for a support worker in case her plan was cut. We should be able to ask for help w/o fear of losing what little we have.
    Parent of an NDIS participant · Disabled personNSW
  • It is unfair and unAustralian to expect the burden and cost of care to shift to parents and carers.
    Parent of an NDIS participant · Sibling of an NDIS participantQLD
  • I have a non disabled child as well as a disabled one. The workload associated with the disabled child is exponentially more than what the non-disabled child required at the same age.
    Parent of an NDIS participantNSW
  • The NDIS has been life changing for us. We've gone from every hour of every day being a complete war zone to 3-5 episodes a day. This is a huge improvement. We've been able to access specialist support that we simply could not afford without the NDIS
    Parent of an NDIS participant · Participant yourselfVIC
  • extensive knowledge of the system due to my previous employment in public health allied health assisting with NDIS goal setting & planning for supports & funding as part of multidisciplinary team of medical, nursing, speech pathology, ot, physiothera
    Parent of an NDIS participant · Disabled personVIC
  • Each person is an individual. You need to look at each case individually and not treat everyone as needing the same level of funding.
    Parent of an NDIS participantVIC
  • Autism is a lifelong disability. Autistics will die without support.
    Parent of an NDIS participant · Disabled personVIC
  • Who will be held accountable when people die as a result of this bill?
    Parent of an NDIS participant · Neurodivergent PersonQLD
  • We haven’t been meaningfully consulted, and none of us want this.
    Parent of an NDIS participant · Disabled personWA
  • I'd love to tell my story to media but don't know how especially when I want me de identified to protect my child's privacy
    Parent of an NDIS participant · Participant yourselfQLD
  • We are already at our limit. Without support it would feel impossible.
    Parent of an NDIS participant · Disabled personVIC
  • Families with children with disabilities are stretched financially. Have more medical needs and less ability to work. Supporting families and people with disabilities adds money to the economy rather than trapping people in a poverty society.
    Parent of an NDIS participantNSW
  • save money by not defending ndis c**p decisions that get overturned at tribunal - save money by paying parent well for caring ($32k for Centrelink) - rather than SIL $400k+!
    Parent of an NDIS participant · Neurodivergent PersonVIC
  • Every day is already a nightmare. I’ll need to relinquish my children if politicians strip the NDIS back any further. And if I have to do that, there’s not much point in carrying on, is there? These children deserve human rights. Their mother does too.
    Parent of an NDIS participant · Participant yourselfTAS
  • It is *essential* that whatever changes are made to the ndis the changes include measuring and *publicly* reporting 6 monthly or more often on how many disabled people have died, for both participants and people forced into other programs.
    Participant yourself · Disabled personVIC

Section 10 - Women's march for the NDIS

You make me do
too much labour.

When support is removed, someone still has to do the work. Usually women. Sunday 21 June, 2pm - on foot, by wheel, by whatever works. Not protest. Evidence.

21 Jun

Sunday

2pm

Local time

All

Welcome

Women's March for the NDIS poster: 'You make me do too much labour' with silhouettes of a woman with a raised fist and a person in a wheelchair with a raised fist. Sunday June 21, 2pm.

Join the march

Move with us.

Wheels, walkers, prams, mobility aids, assistance dogs - all welcome.

  • WhenSunday 21 June, 2pm
  • WhatWomen's March for the NDIS
  • WhoCarers, disabled people, allies
Open the registration form

Form: https://form.jotform.com/261413081333042

Section 11 - What ANPA is asking Parliament to do

ANPA's position: OPPOSE

Six asks. All reasonable. All achievable.

Want the evidence base?

The full case for continued NDIS supports, plus live Harm Tracker data.

Read the evidence
01

Pause passage until the section 9B methodology is published.

Don't vote on a new functional capacity test (s.9B) whose methodology is unpublished and whose Technical Advisory Group does not yet exist.

02

Restore reviewability of automatic plan renewals.

Remove proposed s.50A(4). Every participant must keep the right to internal and AAT review of decisions about their own plan.

03

Amend the automated decision-making framework (s.59B-59E).

Automated systems must not take final administrative actions affecting access to support without meaningful, accessible human review.

04

Amend the parental responsibility provisions (s.34(1G)-(1K)).

Care historically funded by the scheme must not be silently reassigned to families - overwhelmingly to mothers.

05

Repeal or constrain the ministerial reduction power (s.34A).

The Minister must not be able to reduce individual participants' funding by legislative instrument without independent oversight and merits review.

06

Publish independent impact assessments before debate.

CRPD, CRC, gender and First Nations impact assessments on every operative provision - before the Bill is debated, not after.

Action 04 - 60 seconds

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478 families spoke to the Senate inquiry. 93.3% are very concerned about the NDIS Amendment Bill 2026. Read the submission. #NDIS #StopTheCuts #ANPA

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A closing statement

Nothing about us,
without us.

The community has spoken. Parliament must listen.

The Australian Neurodivergent Parents Association·A Disabled Persons Organisation·Submission, May 2026·thisisanpa.org·exec@thisisanpa.org