Submission 994
To the Committee,
I am writing as a mother, carer, and advocate for my young son, who lives with ADHD, significant emotional regulation difficulties, suspected autism, anxiety, and challenges with daily functioning that profoundly impact his ability to paiiicipate safely and consistently in eve1yday life.
I am not writing this submission as a policy expe1i or legal professional. I am writing as someone living the reality of these systems eve1y single day.
Families like mine know what suppo1i means because we know what happens when it disappeai·s.
My son is an intelligent, funny, deeply sensitive child who experiences the world differently. His nervous system is easily ove1whelmed, and eve1yday situations that many families move through without thought can completely destabilise him.
□ Transitions ai·e difficult. □ Unexpected changes ai·e difficult. □ School became difficult. □ Feeling con ected or misunderstood is difficult. □ Even routine daily demands can become emotionally ove1whelming for him.
When he becomes dysregulated, it is not “bad behaviour.” It is panic, overload, feai·, and a nervous system pushed beyond capacity.
Over the yeai·s, we have worked tirelessly to understand what helps him feel safe enough to lea.in , connect, communicate, and paiiicipate in life. Occupational therapy, emotional regulation suppo1is, movement-based strategies, flexible learning approaches, suppo1i workers, and connection-focused parenting strategies have made meaningful differences to his wellbeing and functioning.
Support has not “fixed” my son because he does not need fixing. What suppo1i does is help him access life with greater safety, dignity, and stability.
That distinction matters.
The proposed NDIS changes ai·e deeply concerning because they appeai· to move fuiiher away from understanding disability as a lived functional reality and further toward a system focused on
Submission 994
proving pennanence, exhausting ti·eatment options, reassessment thresholds, and resti·icting access.
For families ah-eady under exh’aordinaiy pressure, this feels devastating.
When funding rnns out, suppo1t stops immediately, but disability does not.
The impact on our family is immediate and severe.
My son becomes more emotionally ove1whelmed and less able to regulate himself safely. His disti·ess escalates. His tolerance for ti·ansitions reduces. Eve1yday activities become hai·der. Paiticipation decreases. Anxiety increases.
And when a child cannot regulate, the entire family absorbs the impact.
Our household shifts into survival mode.
□ Family routines become unstable. □ Social isolation increases. □ Siblings are affected because attention and emotional energy become concenh’ated on managing dish’ess and preventing escalation. □ Financial pressure intensifies because maintaining employment while cai·ing for a child with significant and unpredictable support needs becomes incredibly difficult.
These ai·e not temporaiy inconveniences. This is the lived reality of disability inside a family home.
What concerns me most is the growing nan ative that families must continue proving their child is “disabled enough” to deserve suppo1t .
Children like my son often experience fluctuating capacity. Some days he copes better than others. But improved moments do not erase the underlying disability or the enonnous ainount of support required behind the scenes to achieve those moments.
Families should not have to wait for crisis before suppo1t is considered justified.
From both a human and econoinic perspective, eai·ly and consistent suppo1t makes sense.
When children receive appropriate supports:
□ they regulate better □ paiticipate more safely in education and community life □ experience fewer crises □ build sh’onger long-te1m outcomes □ reduce pressure on schools, hospitals, mental health services, and fainilies
When suppo1t is removed or delayed:
□ disti·ess escalates
Submission 994
participation decreases family burnout increases crises become more likely long-term costs rise elsewhere in the system
The demand for support exists because the need is real.
Families are not accessing the NDIS because it is easy. Most families enter this system exhausted, grieving, overwhelmed, and desperate to help their child function safely in the world.
What is often missing from policy discussions is the emotional cost carried by carers.
There is no clocking off. No guaranteed rest. No certainty that tomorrow will be easier.
There are days where my entire focus is helping my son feel safe enough to get through ordinary life.
And despite this, families are repeatedly asked to gather more reports, attend more assessments, justify more needs, and now face the possibility of even greater barriers to support.
The emotional toll of living under constant uncertainty about whether your child will continue receiving essential support is immense.
My son deserves the opportunity to thrive, not merely survive.
He deserves support before reaching breaking point, not after.
I ask this committee to consider the real human consequences of these reforms. Behind every funding decision is a child trying to cope, a family trying to hold everything together, and carers doing their absolute best to prevent collapse behind closed doors.
We are not numbers. We are not budget lines. We are families asking for the support necessary to give vulnerable children the chance to live safely, meaningfully, and with dignity.
Thank you for taking the time to consider our experience.
Kind regards,