Impact of functional capacity definition on Australians with Autism (Family or carer experience)

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Submission 2796

ATTN: Committee Secretary

Senate Standing Committees on Community Affairs

RE: National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Sunday, May 31, 2026

Thank you for the opportunity to present this parliamentary submission regarding the

proposed amendments to the National Disability Insurance Scheme (NDIS, the Scheme)

currently outlined in the National Disability Insurance Scheme Act 2013 (the Act).

My interest in the National Disability Insurance Scheme Amendment (Securing the NDIS

for Future Generations) Bill 2026 (the Bill) can be attributed to my intersections as a health

practitioner and a spouse and primary carer of a NDIS participant.

The NDIS provides vital support to over 700,000 people living with a disability and

connects them with over 300,000 approved service providers1. In excess of one million

Australians are expected to be impacted by these proposed amendments.

I understand and recognise that amendments to the Act are necessary to ensure scheme

longevity and continued support for our most vulnerable citizens. However, it must not fall upon

NDIS participants, their families, carers and nominees to recoup the fiscal responsibility.

If the Bill is to pass as it currently stands, people living with a disability may be exposed

to an increased risk of harm, restrictions that diminish their capacity and control, and

exclusionary automated decision-making processes.

1 https://dataresearch.ndis.gov.au/explore-data

Submission 2796

Respectfully, I must acknowledge the time restraints to research and digest the proposed

amendments to the Act. Therefore, I have only included two of my concerns regarding the

proposed changes listed below, accompanied by potential negative outcomes (including how my

family will be impacted) if the Bill proceeds as is.

Schedule 1 – Access and planning measures

Part 1 – Defining functional capacity: Moving the goalpost for what is

considered “substantially reduced functional capacity” disproportionately affects

Australians living with complex and dynamic disabilities – such as Autism spectrum

disorder (ASD) and psychosocial conditions. People belonging to these groups are more

likely to experience distress2 and stigma3 relating to their conditions, which can

significantly impact their presentation of functional capacity during an assessment. I

recommend further consultation with occupational therapists, physiotherapists,

psychologists and medical specialists4, as well as people living with disabilities and their

advocates, prior to amending the definition of functional capacity.

My husband lives with ASD level 2 and is a NDIS participant who experiences

fluctuating deficits in all six categories that the Scheme assesses for functional capacity.

Environmental, social, psychological and physical factors can impact the severity of his

disability – and therefore, impact the assessment of his impairment and eligibility for

NDIS support. Changing the definition of functional capacity as a method to “safeguard”

eligibility for NDIS supports threatens to exclude my husband and around 300,000 other

Australians living with Autism5.

2 https://doi.org/10.1186/s13229-025-00695-9 3 https://doi.org/10.1016/j.dhjo.2025.101927 4 https://www.ndis.gov.au/applying/types-assessments/functional-capacity-assessment 5 https://dataresearch.ndis.gov.au/reports-and-analyses/participant-dashboards/autism

Submission 2796

Schedule 1 – Access and planning measures

Part 7 – Plan suspension etc.: Revoking participant status without insight

regarding the person’s current wellbeing or circumstances is irresponsible governance

masqueraded as fraud prevention. This amendment introduces risks to people with

disabilities who rely upon the vital support of the NDIS to maintain fulfilling, safe and

dignified lives. We know from previous cuts that cancellation or reduction of participant

support creates uncertainty, loss of control and systematic isolation from communities6.

A person who does not live with a disability may acknowledge that 90 days is ample time

to respond to contact from a government agency. However, I suggest that this is not

realistic for NDIS participants, many of whom have already proven their reduced

functional capacity regarding communication, self-management and social interactions.

My husband was not eligible for a plan manager on the grounds that he has

informal supports perfectly capable of managing his NDIS plan – me. My concern

regarding the Bill’s no-contact plan suspension is the increased carer burden and fatigue

that would be introduced. The proposed amendment does not take into consideration the

physical and emotional toll that informal carers experience without additional time

restricted administrative tasks. Like many Australians in a similar situation, my health

and wellbeing are adversely impacted by my status as an informal carer7. The proposed

risk of having my husband’s NDIS support revoked because I overlooked emails or

phone calls from a private number deeply frightens me and will impose unnecessary

anxiety in my daily life.

6 https://www.advocacyforinclusion.org/a-cut-is-a-cut-ndis-participants-speak-out/ 7 https://www.aihw.gov.au/reports/australias-welfare/informal-carers

Submission 2796

Gathering information and preparing this submission was an additional task that I deemed

absolutely necessary in the name of civic duty, inclusion and advocacy. I implore the committee

to critically consider the concerns that I have addressed and decide against proceeding with the

Bill.

It is undoubted that people living with disabilities, their families, carers and advocates

will welcome consultation from the committee to draft a more inclusive amendment to the Act

that is based on the principles of self-determination, independence, choice and control.

The NDIS has facilitated participation, enjoyment, safety and community for hundreds of

thousands of Australians living with a disability since its establishment – work with us to ensure

the Scheme can truly be secured for future generations.

Thank you for your consideration.

Kind regards,