Submission 954
Submission to Parliament Regarding Proposed NDIS Bill Changes and the Impact on
Children with Complex High-Intensity Support Needs
To Whom It May Concern,
I am writing as the parent and primary carer of my 12 year old daughter, , about the proposed changes to the NDIS legislation and the devastating impact these reforms could have on children with profound disabilities and complex high-intensity support needs.
I ask that Parliament truly listen to families like ours before making decisions that may permanently change the lives of vulnerable children and the people caring for them.
is 12 year old, however her level of functioning is comparable to that of an infant. Caring for is not comparable to raising a typical teenager. It is more akin to caring for an 8-month-old baby in the body of a teenage girl, every single hour of every single day.
is non-verbal and lives with:
Severe intellectual disability Rare genetic epilepsy with daily seizures that is life threatening Autism Ataxia Hypertonia/Hyper-mobility Dysgraphia Anxiety Depression Obsessive Compulsive Disorder (OCD) Self-injurious behaviours ARFiD (Avoidant Restricted Food Intake Disorder) Incontinence Significant sensory, behavioural and mobility challenges Chromosomal duplication
Gene Mutation
cannot independently:
Feed herself Dress herself Shower or wash herself Brush her teeth or hair Toilet independently Communicate pain, illness or danger Keep herself safe in the home or community Make decisions for herself
She requires constant supervision, physical assistance and intervention 24 hours a day.
experiences daily seizures and currently requires rescue medication as part of her epilepsy management. This means support workers involved in her care must have specialised training and certification to safely respond to medical emergencies. We have
Submission 954
given our daughter CPR 29 times, not something a parent should ever have to experience. She has had 43 operations.
Another critical issue that must be understood is that our immediate family consists only of myself, my husband and our daughter . We do not have any extended family, no-one to step in to assist with ’s care, provide respite, or share the overwhelming responsibilities that come with raising a child with profound disabilities and high-intensity support needs. Anyone involved in ’s care, whether through formal supports or informal supports, must also be trained and certified in the administration of Midazolam rescue medication due to ’s daily seizures and epilepsy risks. This is an enormous expectation and responsibility for any person involved in her life and significantly limits the pool of people able to safely care for her. Every seizure, every sleepless night, every appointment, every behavioural escalation, and every aspect of ’s care fall solely on the two of us. There is no village around us. Without funded supports, there is no backup system. The emotional and physical exhaustion that comes with this level of lifelong caregiving is immense, and yet we continue because is our daughter and we love her deeply. However, families like ours cannot continue indefinitely without adequate support structures in place.
also experiences significant anxiety, emotional dysregulation and self-injurious behaviours which require highly experienced support staff who understand complex disability, communication challenges and behavioural support strategies. Consistency and familiarity of supports are critical to ’s emotional regulation, safety and wellbeing.
What is often not seen by the outside world is the relentless level of care required behind closed doors in our home. .
There is no “break” from disability in our family. We do it and nor does her disability go in holidays.
Every meal, every shower, every outing, every transition, every appointment, every seizure, every emotional escalation, every night-time wake-up and every aspect of ’s daily life requires support, supervision and intervention.
This is lifelong.
is not going to “grow out of” autism. Her intellectual disability will not suddenly improve. Her epilepsy is ongoin permanent and treatment exhausted.. Her inability to independently manage daily living tasks will remain a deficit for the rest of her life. . She requires constant therapy, intervention, support and supervision simply to participate in everyday life.
The proposed changes to the NDIS are deeply concerning because they appear to focus heavily on “functional capacity” assessments, financial sustainability and reducing supports, without fully understanding the reality families like ours live every day.
One of the greatest concerns for our family is the assumption that families and informal supports can simply “do more”.
The reality is we have very limited informal supports around us.
Submission 954
We do not have a large network of people able to step in and provide the level of complex care requires. Much of the responsibility falls solely on our immediate family, and the exhaustion that comes with this level of care is difficult to describe unless you live it yourself.
Support workers are not a luxury in our lives.
They are the reason we are able to continue functioning as a family.
Having trained support workers assist at home and in the community allows us to:
Continue caring for safely Reduce burnout and mental exhaustion Maintain connection as a family Spend time together outside of crisis and caregiving Participate in the community Continue parenting our child, not just managing disability every moment of every day
Without support workers, our world becomes smaller, more isolated and completely consumed by survival.
Community participation is also absolutely essential for .
Due to ’s epilepsy, anxiety, self-injurious behaviours, lack of safety awareness and complex support needs, she requires 2:1 support to safely access the community.
Without adequate supports, accessing the community becomes unsafe and often impossible.
Community access is not a luxury or an “extra”.
It is what gives connection, stimulation, regulation and quality of life.
Another significant challenge we face is the ongoing attrition and instability of support workers within the disability sector. In the last 12 months alone, has experienced 17 changes in support workers. For a child with autism, intellectual disability, anxiety, OCD, epilepsy and self-injurious behaviours, constant changes in carers/support workers are incredibly distressing and destabilising. Building trust, communication, emotional safety and consistency takes time, patience and specialised understanding. Every time a support worker leaves, experiences another disruption to her routine, her regulation and her sense of safety. We fear this proposed bill and further funding restrictions will worsen workforce instability across the sector, making it even harder to retain skilled support workers willing to undertake complex high-intensity care roles. Children like do not simply “adjust” quickly to change. Constant turnover impacts her ability to maintain progress, emotional regulation and even her current level of functioning. For many families, we are no longer fighting for improvement, we are fighting desperately to maintain stability and prevent regression.
Importantly, is now becoming a teenager.
Submission 954
Like all teenagers, she deserves opportunities for independence, social connection, choice and experiences outside her family home. While may not communicate verbally, she still deserves dignity, autonomy and opportunities to engage with the world around her.
Support workers allow to build a level of independence appropriate to her abilities. They allow her to safely participate in the community, access activities, build confidence and experience life as a young person — not simply exist within the walls of our home.
The thought of cuts to these supports is heartbreaking because they are the very things that allow to have a life beyond her disabilities.
The proposed bill would allow:
Existing participants to be reassessed and potentially removed from the NDIS Delays of up to 90 days for reviews and access decisions Reduced flexibility in accessing additional supports during periods of crisis Broad funding cuts or caps to community participation supports Increased expectations on families and informal carers to provide more unpaid care
For families like ours, these changes are not minor administrative reforms.
They have the potential to completely destabilise our ability to continue caring for safely at home.
Parents of profoundly disabled children are not simply parenting.
We are nurses, therapists, behavioural supports, medical responders, advocates, support coordinators and full-time carers every day and every night.
There is a real fear that reforms aimed at reducing costs will disproportionately impact those with the highest and most complex needs.
If ’s supports are reduced:
Her safety will be compromised Her health and emotional wellbeing will deteriorate Her self-injurious behaviours and dysregulation may escalate Our family’s mental health and ability to continue caring will decline further. The family unit will breakdown. Hospital admissions and crisis situations may increase will become more isolated and excluded from her community
The NDIS was created to support Australians living with permanent and significant disability to live safely and participate meaningfully in society, ‘live their best life’ and to have choice and control.
Children like cannot simply become more independent through reduced supports.
Her disability is permanent, severe, and lifelong.
Submission 954
I urge Parliament to ensure that any reforms to the NDIS:
Protect children with profound disabilities and high-intensity complex support needs Preserve community participation supports Recognise the enormous unpaid care already provided by families Maintain access to specialised and medically trained support workers Ensure assessments properly reflect real world functional capacity and support needs Do not place additional barriers on families already operating at breaking point
Children like deserve dignity, safety, inclusion and the opportunity to experience life beyond the four walls of their home.
Families like ours deserve support, not further exhaustion, fear and isolation.
I ask that the voices of families living this reality every single day are genuinely heard before any changes are implemented.