Submission 2232

Confidential

Senate Standing Committee on Community Affairs

Re: NDIS Amendment (Securing the NDIS) Bill 2026

I am writing as the parent and sole carer of my child who is autistic with multiple disabilities and lives in Queensland. I also care for my elderly parents and a younger sibling. I am submitting this to the Senate Standing Committee on Community Affairs in response to the NDIS amendment (Securing the NDIS) Bill 2026.

My child’s autism does not present alone. He also has ADHD, Learning Disabilities, Language Disorder, Sensory Processing Disorder and a General Anxiety Disorder with self-harm behaviours. These conditions interact constantly and cannot be separated into neat categories. The support my child needs, for example, occupational therapy to assist with executive function, communication and behaviour therapy to assist with coping strategies/meltdowns and communication skills addresses needs that cut across all of these conditions at once. These supports cut across all of these conditions at once. He also needs 1:1 support particularly during transition periods, but also at other times of risk as well. His anxiety driven behaviours make it dangerous to leave him unsupervised and unsupported.

Under this bill the NDIA could determine that this support does not ‘directly’ arise from the autism diagnosis and therefore should not be funded. My child’s presentation would not change, his needs would not change, but their funding could be removed. This is not a theoretical risk. Many autistic people are already being told their co-occurring conditions are not part of their NDIS recognised impairment. Research published in the Journal of Autism and Developmental Disorders (Guan et al, 2021) confirms that the majority of people with autism have at least one co-occurring condition. These are not separate issues, they are part of the same person.

I ask that the committee remove the word “directly” from the Bill and restore the NDIA’s obligation to fund support for the whole person, not just an isolated diagnosis.

I am the sole carer for my child. Primary carers of autistic children and adults are disproportionately women, in 2018, there were an estimated 860,000 primary carers of people with disability in Australia. The majority are women. These carers consistently report reduced

Submission 2232

or ceased paid work, reduced superannuation, physical and mental health decline and long term financial disadvantage they do not recover from.

The NDIA’s own quarterly data (March 2025) shows that carer employment rose 6 percentage points from 46% to 52% - with access to the NDIS. This is not a coincidence. Formal support enables primary carers to participate in paid work. When support is cut that participation is reversed. This is the direct, documented relationship between NDIS funding and workforce participation for carers.

When my elderly parents were no longer able to provide care for my children, I was faced with trying to choose between remaining in the workforce and supporting my family. The NDIS funding allowed me to remain in the workforce at .02 of full time. At the time I was not eligible for a carer payment for my child and job seeker was not an appropriate long term solution. Job seeker is designed to support people for a short period between jobs, not for long term family life.

I am now a carer for both of my parents, my child and my younger brother. I am also the unpaid community support. I can’t ask for unpaid help from the community, because I am that help. I am the person that people come to when they need assistance, but as the demands on my time increase, I am finding that there are times when I have to let people know that I am not able to help them anymore.

The proposed changes in this Bill – including pre-set funding limits for autistic children, the requirement to demonstrate “appropriate treatment” and the diversion of children under 9 off the NDIS – will each individually increase the care burden on families (particularly single parent families). Together, they will force more primary carers – predominantly women out of the workforce entirely.

The Bill makes this worse through new provisions in subsections 34 (1G) and 34 (1H), which create a legal presumption that parents are responsible for providing supervision, personal care, transport, behaviour support, and the other day-to day assistance to their children with a disability. Under subsection 34(1), the NDIS would be directed to ignore the pressure this places on families when deciding whether to fund a support. Families are already experiencing the consequences of this approach. During a senate hearing on eligibility reassessments CYDA CEO Skye Kakaoschke-Moore shared this account from a family. “We were told that because my son was under 18 that everything was deemed parental responsibility. I was told that If I couldn’t fulfill my parental responsibility that I’d be reported to the department of Children’s Services.” These provisions do not reflect the reality of raising a child with complex disability needs. They reflect a policy decision to transfer costs from the NDIS onto families – and onto women in particular.

This is gendered economic harm. I aske the Committee to remove subsections 34(1G), 34 (1H) and 34(1J) from the Bill, to require a gender impact assessment of all proposed changes before this Bill proceeds and to commission modelling of the effect on carer workforce participation if the proposed funding reductions are implemented. Note that CCS is not available for children over 16 even if they have a disability, In home care and access to transport that does not

Submission 2232

require someone to drive them, is not always available for older children and leaving them unsupervised when there is a high risk of harm is not an option.

Schedule 1 of the Bill which requires functional capacity to be “assessed without assistance” from supports, assistive technology or environmental adaptions, as far as possible and the cumulative effect of the proposed changes in the bill and the impact on Primary carers, especially women.

My child has a hidden disability at the same level as someone who is profoundly deaf or legally blind, but his disability is with language and communication. He has selective mutism and currently relies on some AAC and a support worker to manage daily life. Without these supports my child cannot communicate or access the community safely. He accesses Occupational Therapy to assist with transitions and daily life activities both at home and in the community and other therapy to support behaviour and communication. His support needs are at their highest during times of change, when for example, there are new public transport routes to be accessed, new skills and strategies to be learnt. These supports are not optional extras, they make daily life possible.

If my child is assessed as though these supports do not exist, the NDIA could determine that they have low support needs and then remove the funding that creates that stability. This is circular and dangerous logic. A person appears to have low needs because their support is working.

The assessment of how a person actually functions in their daily life-(with their environment, their supports and their routines in place) has noted that the NDIS review itself recommended that assessment processes allow for evidence from a range of sources including treating professionals. The Bill moves in the opposite directional favouring standardised snapshot assessments that cannot capture fluctuating needs, masking or the invisible work that keep an autistic person stable. My child’s occupational therapist and treating team understand their functional capacity. A brief administrative assessment does not.

I ask the committee to remove the requirement that functional capacity be assessed without assistance and to require instead that assessments reflect how a person actually functions in their real life, with their existing supports in place. I also ask the committee to protect the role of allied health and treating professionals evidence in all NDIS access, planning and reassessment decisions and to ensure that no automated or administrative assessment can override clinical evidence from a qualified practitioner.

Families like mine are already at breaking point. The deaths of autistic children in Perth in January 2026 and Campbelltown in May 2026 are evidence of what happens when support is withdrawn from families who have no capacity left. This Bill must not make that more likely.

Yours sincerely,