Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track) (Family or carer experience)

Submission 2538

Submission to the Senate Standing Committees on Community Affairs

Inquiry into the National Disability Insurance Scheme Amendment (Getting the NDIS Back

on Track)

Submitted by:

Capacity: Parent, Full-Time Primary Carer, and Resident of Queensland

My name is                 . I am a resident of the           region in Queensland, and the

full-time primary carer for my two daughters,    (aged 5) and   (aged 3). My eldest

daughter, , received a birth diagnosis of Trisomy 21 (Down syndrome) and a mild hearing loss. She has been supported by the NDIS since birth, accessing critical early intervention including hearing aids and physiotherapy in her early years, and currently receives weekly Occupational Therapy (OT) and fortnightly Speech Therapy.

I am writing this submission to urge the Committee to carefully consider the human cost of the proposed amendments within this Bill. My family currently lives in a state of clinical burnout. My partner works six days a week to financially sustain our household, leaving me to manage ’s complex needs entirely solo during the week.

exhibits profound challenges with transitions, behavioral regulation, and severe absconding (running away) behaviors, making her physical safety a constant, high-stakes concern. These behaviors frequently manifest as physical aggression toward me, which has significantly impacted my health, fractured our mother-child relationship, and pushed me into medical treatment for severe caregiver burnout. I am currently fighting to keep my

family afloat while preparing to transition     into the local           Special School, an

environment better equipped for her complex needs than a mainstream setting.

2. Key Concerns Regarding the Bill

Issue A: Unrealistic Expectations on Families and Unpaid Carers

This Bill places a heavier legal expectation on family networks to absorb the physical and therapeutic labor of care. I wish to state plainly to the Committee that my family has absolutely no surplus capacity to absorb further load. Due to the intense demands of his employment, my partner has never spent more than an hour solely caring for ; he lacks the specialized training and patience required to safely manage her complex profile. Mainstream parenting framework such as the ‘Circle of Security’ or ‘Bringing Up Great Kids’

Submission 2538

courses, which I have proactively completed, completely failed to address the realities of neurodivergent and developmental disabilities like ’s.

To suggest that unpaid, traumatized, and burnt-out mothers can simply substitute for professional therapeutic intervention is dangerous and detached from reality. I am already stretched far beyond my psychological and physical means.

Issue B: Narrowing Definitions of “Reasonable and Necessary” Supports

The proposed changes threaten to restrict or automate funding allocations within Core and Capacity Building budgets. Without ’s current allocation of weekly OT and fortnightly speech therapy, I do not know how our family would have survived this last year.

’s therapist does not merely “treat” her; they are the only mechanism translating ’s sensory and behavioral triggers into actionable strategies for me. Her OT acts as our developmental anchor, sourcing specialized disability-focused parent education to strengthen my capacity. Reducing these hours under a narrower, more rigid definition of “reasonable and necessary” will instantly trigger a domestic crisis in our home.

3. The Practical Impact and Risks to Safety and Dignity The Committee must understand the critical timing of these proposed legislative cuts. is currently preparing to transition into the school system. This is a monumental, high-risk disruption to her routine that will cause a massive shock to her nervous system. She requires intensive, professional therapeutic scaffolding to navigate this new world safely, support that I am medically and physically incapable of providing on my own.

Furthermore, as a mother, my greatest and most heartbreaking fear is for ’s long-term safety. is an extraordinarily vulnerable person. If she does not receive the specialized communication and self-advocacy tools she needs through continuous Speech and Occupational Therapy right now, she will lack the ability to communicate distress or establish boundaries. Without this dignity of care, the risk of her being taken advantage of as she grows older increases exponentially. Early intervention is the only shield protecting her from future vulnerability and abuse.

4. Conclusion and Practical Recommendations When lawmakers look at the NDIS purely as a budget line item to be reduced, they are directly compromising the safety of children like and the survival of mothers like me. If you cut these vital early intervention lifelines or make the administration of plans more punitive, you are not “securing the scheme for future generations” you are abandoning the current one to structural collapse.

Submission 2538

I respectfully ask the Senate Committee to recommend the following safeguards:

1. Mandate Carer Sustainability Assessments: Introduce strict legislative blocks that prevent any participant’s funding from being reduced if the primary carer is under documented medical treatment for burnout.

2. Protect Early Intervention for Crucial Life Transitions: Ensure that children entering major life transitions (such as starting school) have their therapeutic hours legally protected from automated or arbitrary budget cuts.

3. Acknowledge the Failure of Mainstream Systems: Reject provisions that force families to rely on generic community programs or mainstream parenting courses, which are fundamentally unequipped to handle complex developmental profiles like Trisomy 21.

Thank you for your time and for considering the reality of our lives.

Sincerely,

, Queensland