Submission 1949

Submission to NDIS enquiry, Future Generations Bill 2026

Background

My eldest daughter, age 10, has recently been diagnosed with Autism, Level 2.

We sought a diagnosis based on her challenging behaviours at home, including a very restricted diet, increasingly violent episodes and high anxiety.

I understand this diagnosis to place her within the “low to moderate Autism” category described in current commentary around the NDIS, with the high number of people in this category contributing to the challenges of the current NDIS scheme. I understand that people with this diagnosis are likely to be removed from the NDIS under the coming changes.

While Thriving Kids is being established to provide support options for children under 9, it is unclear what support will be available for children like my daughter, who will be assessed on the basis of their ‘functional capacity’ with the coming changes.

Functional Capacity

I am unsure what a functional capacity assessment of my daughter by an external assessor will mean for us.

My daughter does well at school. Her Year 3 NAPLAN results show her to be in the highest bands across all areas of assessment. She is highly socially motivated, maintains a number of close friendships and enjoys attending school. She participates in all areas of learning and is polite and respectful.

At home however, my daughter’s “low to moderate” Autism impacts every aspect of our ability to function as a family. It impacts on our physical and emotional safety and wellbeing, and our ability to participate in the experiences we would like to be able to do together as a family, including family meals, peaceful time at home doing things together, outings, holidays.

My daughter’s Autism assessment report indicates that in order for her to function well at school, she masks highly, with the result that her nervous system has nothing left to support her function at home. As a result, we experience the following challenges:

• Frequent violent meltdowns and extreme behaviour (daily)
• Physical damage and disruption to furniture and belongings
• Physical injury to her younger sister and myself
• Severe dietary restrictions resulting in iron and other nutrient deficiencies
• High food/grocery bills in order to provide sufficient safe foods to maintain body weight – (often processed, packaged or takeaway, including ice creams, take away pizza, flavoured milks, two minute noodles etc)

Impact on Family

My youngest daughter, aged 7, is highly impacted by her sister’s challenging behaviours. She is the victim of frequent physical attacks, including choking, pushing, restraining, hitting, kicking. She is regularly interrupted and prevented from carrying out the tasks or activities she is engaged in. Her room and belongings are frequently upended and damaged, or threatened to be. She often offers up things that are rightfully hers to calm or placate her older sister. She is often prevented from going to sleep or woken up once she is asleep.

These experiences have a significant impact on my youngest daughter’s own nervous system and mental health. She is now easily triggered and frequently dysregulated herself as a result. She experiences frequent stomach aches, which a pediatrician has diagnosed as being caused by anxiety. I worry about the impact this will have on her long-term health and wellbeing, and ability to respond to challenging situations in the future. We have sought a mental health care plan to provide my youngest daughter with psychological support.

We find ourselves unable to fully relax, always ready to respond to the next meltdown or emotional outburst, or forward planning and project managing how things need to happen to minimise the risk of the next meltdown

Submission 1949

or outburst. We respond quickly to demands in order to placate and maintain peace. All of our nervous systems are impacted – on edge and at burnout, meaning that we don’t always have the capacity within ourselves to respond to these challenges in the way that we would like to – our fight or flight responses are activated as well due to the constant dysregulation we absorb.

My daughter’s dietary restrictions make mealtimes challenging. We are rarely able to sit at the dinner table and enjoy a shared meal together. A variety of meal options have to be planned and prepared, which is challenging to manage cohesively after a full day at work

It can take my daughter a long time to wind down for sleep at the end of the day. She has always needed to co-sleep in order to be able to sleep, and the process of getting ready for sleep, including last minute food/drink requirements, story reading, conversation can take up to two hours. This impacts on my ability to manage basic household tasks in the evening and achieve sufficient sleep myself.

Support needs

My daughter’s Autism assessment indicates that she has the potential to live and healthy and fulfilling life with the right supports.

Our hope is that, with the right supports now and into the future, she will be able to understand her condition and have the knowledge to manage her condition so that she can fulfil her potential, including the ability to live independently, have a career, maintain positive relationships with friends and family and contribute to her community.

Her current support requirements include:

• Occupational therapy, including group therapy options
• Psychology
• Dietician
• Speech pathology (to assist with dietary supplement options, such as the ability to take vitamin/iron pills)
• Sensory supports

Financial impacts

As my daughter has only recently been diagnosed, she is yet to join the NDIS.

The financial impact of providing her with the support she needs is significant.

The initial assessment to obtain the diagnosis cost $3700, with no Medicare rebate.

Psychology sessions cost $220 per session, with only 10 sessions per year partially subsidised through Medicare.

Our initial Occupational Therapy assessments cost $600, with subsequent sessions costing between $220 and $360 each. We have been recommended to attend weekly occupational therapy sessions plus a weekly group program. We will receive 5 subsidised sessions through a GP Chronic condition management plan, but that is all.

With the addition of psychology support for my youngest daughter, these costs will quickly become unmanageable without additional support.

I earn a relatively high salary, but as a single parent paying rent and childcare, in addition to regular cost of living expenses, the additional therapy costs to provide the needed support for both my children quickly add up so as to become inaccessible. There is little room to cut expenses or make sacrifices to meet these costs in a sustainable way. I am unable to maintain any significant savings.

In conclusion

My fear is that without access to these required supports, my daughter’s functional capacity and long-term health and wellbeing will be impacted.

Submission 1949

If my daughter is not supported to achieve her full potential now, I worry that she will require government support in other ways in the future – through welfare payments or increased medical/mental health care. Surely it is better for the investment to be in her potential to make a positive contribution and live independently as an adult, rather than to allow her needs to go unmet and for her functional capacity and ability to contribute to be limited as a result.

Similarly, I worry about the immediate safety and long-term impact on my youngest daughter if we can’t provide my eldest daughter with the supports she needs.

I worry about my own ability to sustain the demands of caring for both my children, while meeting the demands of my work. Seeking a job with reduced responsibility is not financially viable, but our current situation sees me nearing physical and emotional burnout.

I ask that the government considers the needs of families like mine when they are reviewing the capacity of the NDIS to support people with an Autism Level 2 diagnosis. I suggest that perpetuating the idea that this diagnosis is of “low to moderate” impact is misleading and does not account for the impact that this diagnosis has on every aspect of our lives.

My daughter is smart, clever, observant, funny, caring. With the right support, she can learn to understand her condition and be supported to lead a healthy and fulfilling life and make a contribution to our society.

I hope that the Government will consider her needs and think about the return on their investment in her future that can be supported through the NDIS or replacement support scheme.