Submission regarding proposed changes to the NDIS
I am the mother and primary carer of my 21-year-old son, T, who has Autism Spectrum Disorder (ASD) and ADHD. I am writing to explain why NDIS supports are essential for him and for the effective functioning of our broader family. how they are helping him build independence and keeping me in the paid workforce, and what the likely consequences would be if these supports were reduced or removed.
T is a bright and capable young man who wants the same things many young adults want: meaningful work, friendships, greater independence and a future where he can contribute to his community. However, because of his disability, he requires significant support to achieve these goals.
One of the challenges in understanding T’s needs is that his disability is not always immediately visible. In short interactions he can appear capable and articulate. However, the reality of living independently, managing daily responsibilities and navigating community life is very different. His disability significantly affects his executive functioning, emotional regulation, communication, social participation and ability to complete everyday tasks without support.
A good example of T’s challenges can be seen in job interviews. T wants to work and has previously maintained employment, but he struggles to understand the unwritten social expectations that most people take for granted. When preparing for interviews, T genuinely does not understand that he is expected to “sell himself” to a potential employer. He believes it is repetitive and unnecessary to describe his skills or strengths in different ways throughout an interview. From his perspective, if he has already answered a question once, repeating or expanding on that answer seems illogical and even dishonest.
As a result, T can appear disengaged, unenthusiastic or poorly prepared, despite genuinely wanting the job. He requires significant coaching and support to understand these social expectations, practise interview skills and recognise what employers are actually looking for. This is not a lack of motivation or effort. It is a direct result of the way his disability affects social communication, perspective-taking and executive functioning.
This is one example of how T’s disability can be misunderstood. An interviewer may see a capable young man and assume he simply lacks interest in the role. In reality, he is navigating social rules and expectations that are not intuitive to him and which require explicit teaching, practice and support.
T has been out of school for three years. Although T maintained a part-time job at Woolworths for approximately two years, he ultimately lost that role after following a supervisor’s instruction that conflicted with workplace guidelines. This is an example of how his disability can affect workplace performance. T often interprets instructions literally and can struggle to navigate situations where there are competing expectations or unwritten rules.
While he is currently unemployed, he remains interested in pursuing an electrical apprenticeship and becoming more independent. These achievements have not
happened by accident. They have been supported by the combination of family support, therapy and NDIS-funded services that help him build skills and participate in the community.
The purpose of T’s NDIS plan has never been to create dependence. Its purpose is to help him develop the skills needed to reduce his reliance on support over time. His goals include increasing his independence, improving his employability, developing social relationships, participating in the community and ultimately moving towards independent adult living.
For T, support means much more than assistance with individual tasks. He requires ongoing scaffolding to initiate, plan, organise and complete activities that many people take for granted. A typical day may involve multiple prompts and support to get out of bed, maintain personal hygiene, prepare for appointments, manage responsibilities, communicate with others, regulate emotions and transition between activities. Without support, many of these activities simply do not occur consistently.
One area where T has made significant progress is managing his medication. In the past, I was responsible for ensuring prescriptions were filled, medication was purchased and doses were taken correctly. Through ongoing support and skill development, T now takes much greater responsibility for remembering to take his medication, understanding how it affects him, purchasing medication when needed and organising appointments to renew prescriptions. He still requires support to attend medical appointments and navigate discussions with health professionals, but this is a good example of how targeted supports have increased his independence over time. The goal of T’s NDIS plan is not to create ongoing dependence but to help him gradually take responsibility for more aspects of his own life, and this is one area where that approach has been successful.
T’s occupational therapy assessment found significant impairments in executive functioning, emotional regulation, communication, socialisation and adaptive behaviour. The assessment concluded that T requires daily one-to-one support to participate functionally in routines, activities of daily living and social interactions. It also found that he is heavily reliant on prompting, modelling and co-regulation and that he remains substantially dependent on familiar support people to engage successfully in daily life.
Importantly, the assessment notes that T is at risk of functional decline, social isolation and reduced engagement in meaningful activities if appropriate supports are not provided. These risks are not theoretical. They reflect challenges we have already observed whenever support structures are reduced or disrupted.
NDIS supports are helping T to:
develop practical daily living skills improve emotional regulation and coping skills build social confidence and maintain community participation develop employment-related skills and vocational readiness learn strategies to manage executive functioning challenges work towards greater independence in adulthood.
These supports are an investment in his future. They are helping him build capabilities that will reduce his long-term reliance on both his family and government services.
Without NDIS supports, I believe T would become more isolated, less engaged and more dependent. He would be significantly less likely to participate in employment, training or community activities. The progress he has made towards independence would slow or potentially reverse. Rather than reducing his reliance on family support, the burden would shift almost entirely onto me.
When T lost his job at Woolworths, the impact extended well beyond the loss of employment. He became depressed, spent most of his time in his room and withdrew from many of the activities that had previously connected him to the wider community. He stopped helping around the house, rarely socialised and required a substantial increase in support from me to maintain routines and rebuild his confidence. This period reinforced how important routine, meaningful participation and structured support are to T’s wellbeing and progress towards independence. It also demonstrated how quickly his functioning can decline when a key source of purpose and support is removed.
As his mother, I already provide extensive unpaid care every day. I act as his advocate, coordinator, mentor, emotional support person, scheduler, transport organiser and primary source of structure. Much of this work is invisible, but it is constant.
The broader economic impact of NDIS supports
I would also like the Government to consider the broader economic impact of NDIS supports, not only for participants but for their families.
I am the primary carer for my three children, including T. For almost 20 years, I was out of the paid workforce while raising my children and providing the significant support T required because of his disability.
During those years, much of my time was spent helping T manage the challenges associated with autism and ADHD. This included supporting him through school, helping him navigate daily life, managing appointments, developing social skills, building independence and providing the structure and supervision he required to function successfully.
The introduction of NDIS funding was a turning point for our family. For the first time, formal supports were available to share some of the responsibilities that had previously fallen entirely to me. While I remain T’s primary support person and continue to provide substantial unpaid care every day, the support provided through the NDIS made it possible for me to return to paid employment.
Today I work full-time in a professional role. As a sole parent, this income allows me to support my family, maintain our housing and provide stability for my children. Without the support structure created through T’s NDIS plan, it is highly unlikely that I would have been able to return to work at the level I do today.
If I were unable to work, the consequences would extend beyond my own career. My family would become increasingly reliant on government income support and other forms of assistance. The cost of withdrawing supports from T would not disappear; it would simply shift elsewhere.
This is an economic benefit that is often overlooked in discussions about the cost of the NDIS. The scheme does not only support people with disability. It also enables parents and carers to participate in the workforce, earn income, pay tax and remain financially independent.
If T’s supports were reduced or removed, a greater share of his support needs would inevitably fall back onto me. This would affect my ability to maintain full-time employment and continue supporting my family independently.
The NDIS has allowed T to work towards greater independence while also allowing me to rebuild my career after almost two decades away from paid employment. It has reduced our family’s reliance on government support, increased our economic participation and improved our long-term prospects. In time, T will also join the workforce and move towards financial independence. That is a significant return on the Government’s investment and one that should be recognised when considering changes to the scheme.
In our family’s case, NDIS funding has transformed us from a family reliant on a single unpaid carer into a family where both the participant and the carer are working towards greater independence and economic participation.
Conclusion
The NDIS has given T opportunities that would otherwise have been out of reach. It has helped him move towards adulthood rather than away from it. The supports he receives are not luxuries. They are practical, targeted interventions that help him participate in society and work towards the goals that most young adults take for granted.
I ask that any changes to the NDIS recognise that young adults like T often require ongoing support during the transition to adulthood. Progress is rarely linear, and independence is built gradually over many years. Removing supports before those skills are fully established does not create independence. It risks increasing dependence, social isolation and long-term disadvantage.
The NDIS is helping T build a future. I urge the Government to ensure that people with disabilities who are working towards greater independence continue to have access to the supports that make that progress possible.
SD
Mother and primary carer