To Whom It May Concern,
My name is and I am the father of , a three-year-old girlliving with profound disabilities and extremely complex medical needs.
I am writing this submission because I am deeply concerned about the proposed NDIS reforms and the impact they will have on children like my daughter and families like ours.
Like many fathers, my role is to protect and provide for my family. I work long hours, six days per week, to ensure that we can keep a roof over our heads.
Despite working as much as I can, there is simply no income that could replace the support provided through the NDIS and I am also experiencing severe burnout.
My daughter requires constant supervision and intervention to remain safe. She lives with severe cerebral palsy, epilepsy, profound intellectual disability, bulbar dysfunction, visual impairment and multiple other complex conditions. She cannot walk, talk, swallow safely, feed herself, communicate her needs or protect her own airway.
Our lives revolve around keeping alive.
The proposed reforms create significant fear that families like ours could lose access to essential supports despite overwhelming evidence of need. They create uncertainty for families already living under extraordinary pressure and place vulnerable children at risk of losing the supports that allow them to remain safely at home.
As a father, I fear these reforms will increase the burden on families who are already operating beyond their limits.
I also fear what these changes will mean for my wife, .
The reports submitted as evidence clearly document severe caregiver burden, extreme burnout, significant mental health impacts and escalating psychosocial strain. I see this every day. I see the exhaustion, the sleep deprivation, the anxiety and the relentless pressure that comes with managing every aspect of ’s care, therapies, appointments, staff management and advocacy.
The NDIS does not simply support .
It supports our entire family and allows us to continue functioning.
Without adequate support, I genuinely fear for both my daughter’s safety and my wife’s wellbeing.
One of the most concerning aspects of the proposed reforms is the possibility of reassessment and further reductions to support despite ’s condition being permanent, severe and lifelong.
Our family has already experienced reductions in funding despite evidence from multiple treating professionals that ’s needs have increased significantly.
As a father, it is incredibly difficult to understand how supports can be reduced when:
seizure activity has increased, medical complexity has increased, support needs have increased, carer burnout has increased, and the risks to ’s safety have increased.
The reality is that reduced funding does not reduce disability.
It simply transfers more responsibility onto exhausted parents and places medically vulnerable children at greater risk.
When support hours are reduced, those hours do not disappear.
They become hours that parents are expected to absorb.
For our family, that means fewer opportunities to sleep, fewer opportunities to recover, greater emotional strain and an increased risk of physical and mental collapse.
Families like ours are not asking for luxuries.
We are asking for the support necessary to keep our daughter safe, healthy and alive at home.
The NDIS was established to provide Australians with disabilities the support they need to participate in life and to relieve families from carrying impossible burdens alone.
I am concerned that these reforms move us further away from that vision.
I urge the Government to carefully consider the impact these changes will have on families caring for children with profound disabilities and complex medical needs.
Children like cannot advocate for themselves.
They rely on their families to speak for them.
I ask that our voices be heard.
I ask that the evidence provided by ’s treating professionals be respected.
Most importantly, I ask that the Government recognise that behind every funding decision and every legislative change is a real child, a real family and real lives that will be directly affected.
Sincerely,
Father and Advocate for