Submission 1521
Submission regarding the National Disability Insurance Scheme Amendment
From:
Introduction
I am writing this submission as a disabled adult, a mother, and the primary carer of two children who are NDIS participants.
I am not currently an NDIS participant myself, although I am in the process of applying for access. I live with significant disability and chronic health conditions that affect my daily functioning, parenting capacity, mental health, physical capacity, community access, and ability to manage basic daily life.
My two children are both NDIS participants and require ongoing support due to their disabilities. Because of this, the NDIS is not an abstract policy issue for my family. It directly affects our safety, stability, wellbeing, and ability to function.
I am deeply concerned about any proposed changes that may narrow eligibility, reduce access to supports, or make it harder for people with autism, psychosocial disability, developmental disability, chronic functional impairment, or complex needs to receive the support they require.
For families like mine, the NDS is not a luxury. It is what helps prevent complete cries.
- Autism and Disability Cannot Be Treated as Simple or Standardised
One of my biggest concerns is the possibility that autism or related neurodevelopmental disabilities may be restricted, questioned, or removed as a clear pathway to NDIS support.
Autism is lifelong. It does not disappear because a person gets older, masks well, appears verbal, has learned to survive, or has family members trying to hold everything together.
In my family, disability is not something that exists neatly in one person. It affects the whole household. My children’s needs require constant planning, supervision, emotional regulation, routines, advocacy, appointments, therapies, and support. At the same time, I am trying to manage my own disability, chronic illness, pain, fatigue, sensory overwhelm, executive dysfunction, mental health, and burnout.
No two autistic people are the same. Some people may appear capable in short interactions but be completely unable to sustain daily life without significant support. This is especially true for adults, women, parents, and people who have spent years masking or being unsupported.
Eligibility and support decisions need to be based on functional impact, not assumptions about diagnosis, appearance, age, or whether someone has managed to survive without help until now.
Submission 1521
The Impact on Parent-Carers Is Significant
As a parent of two children on the NDIS, I am already carrying a very high level of caring responsibility.
Parenting disabled children is not just ordinary parenting with extra appointments. It often involves constant co-regulation, managing meltdowns, sensory needs, sleep difficulties, school challenges, therapy schedules, behavioural support, emotional distress, advocacy, paperwork, safety planning, and trying to keep the household running around everyone’s needs.
When the parent is also disabled, the pressure becomes much greater.
I am not simply tired. I am burnt out and struggling to function. My own needs are often pushed aside because my children’s needs have to come first. This has affected my ability to care for myself, maintain the house, manage appointments, regulate my own emotions, keep up with daily tasks, and participate in the community.
Without appropriate NDIS support for both children and disabled parents, families like mine are left trying to survive on informal support alone. That is not sustainable.
Reducing Supports Does Not Remove Need — It Shifts the Burden
If NDIS access is reduced or supports are cut, the need does not disappear.
It shifts onto parents, partners, siblings, schools, hospitals, mental health services, GPs, emergency services, and unpaid carers.
In my family, if my children do not receive the right supports, their needs increase at home. If I do not receive the right support, my capacity to care for them decreases. This creates a cycle where everyone becomes more overwhelmed and less able to cope.
For families already under pressure, even small reductions in support can have serious consequences. It can mean more meltdowns, more shutdowns, more family stress, more missed appointments, more isolation, more mental health decline, and more crisis situations.
The NDIS should be preventing crisis, not waiting until families collapse.
Medicare and Mainstream Services Are Not Enough
It is not realistic to suggest that people with lifelong disabilities can simply use Medicare, public health, school systems, or community services instead of the NDIS.
Medicare sessions are limited. Public mental health services are overwhelmed. School systems are not designed to provide the level of individualised disability support many children need. GPs and specialists may diagnose and refer, but they do not provide the ongoing practical support required for daily functioning.
Submission 1521
For children and adults with complex disability needs, a few subsidised sessions per year is not enough.
My family needs consistent, practical, disability-informed support. This includes therapies, capacity building, support workers, behaviour support, emotional regulation support, daily living support, community access, and help maintaining functioning before everything becomes a crisis.
5. The NDIS Must Recognise Whole-Family Impact
When a child receives NDIS support, it does not only help the child. It helps the entire family function more safely.
Support for my children helps reduce pressure on me as their parent. It helps them build skills, access the community, regulate, communicate, participate, and develop independence. It also helps reduce the constant strain on the household.
But when parents are also disabled, the system needs to recognise that family capacity is not unlimited.
I cannot keep being treated as an endless informal support simply because I am their mother. I love my children deeply, but love does not remove disability, chronic illness, exhaustion, burnout, or the need for practical support.
If parent-carers are pushed beyond capacity, the entire family becomes vulnerable.
6. Disabled Adults Who Are Parents Need Support Too
I am currently applying for NDIS support for myself because my disability significantly affects my daily life.
I need support not because I do not want to try, but because I am already trying beyond what I can sustain. My functioning is affected by autism, mental health difficulties, chronic pain, fatigue, neurological symptoms, sensory overwhelm, executive dysfunction, and burnout.
These difficulties affect basic daily living tasks such as personal care, meals, medication management, cleaning, organising, appointments, leaving the house, communication, emotional regulation, parenting capacity, and maintaining routines.
Without support, I am left relying heavily on my husband and trying to push through until I crash. That is not independence. That is survival.
The NDIS should support disabled adults to maintain capacity, prevent deterioration, reduce reliance on family, and participate in family and community life.
Submission 1521
Support Workers and Practical Supports Are Essential
Support workers are often misunderstood as optional or “extra,” but for many families they are essential.
For children, support workers can assist with community access, emotional regulation, skill building, independence, transitions, and reducing reliance on parents as the only safe people.
For disabled adults, support workers can help with daily living, community access, appointments, routines, household tasks, and preventing isolation or deterioration.
In families like mine, support workers can also reduce the pressure on the household as a whole. They can help prevent parent-carer burnout, reduce crisis, and allow children and adults to build capacity in a safer and more sustainable way.
Removing or reducing access to support workers would place even more pressure on families who are already struggling.
Complex Needs Do Not Fit Into One Box
Many people who need the NDIS do not have one simple diagnosis.
In my own life, my disability is complex and affects multiple areas of functioning. My children also have needs that affect many parts of daily life, including emotional regulation, sensory processing, routines, sleep, communication, learning, behaviour, and community participation.
When systems only look at one diagnosis at a time, they miss the reality of how disability works in daily life.
A person may have autism, ADHD, anxiety, trauma, chronic pain, fatigue, vestibular issues, migraines, sensory processing difficulties, executive dysfunction, and mental health challenges all interacting together. The functional impact can be severe, even if each individual condition is treated as separate or minimised.
The NDIS needs to assess the whole person and the whole functional picture.
The Current System Is Already Hard to Navigate
Applying for and managing NDIS support is already overwhelming.
Families are expected to gather reports, understand complex language, prove disability repeatedly, attend appointments, manage plans, coordinate providers, advocate for supports, and explain their lives over and over again.
For disabled parents, this process is even harder because the very disabilities that create the need for support also make the application and review process difficult to manage.
Submission 1521
If the system becomes more restrictive, more complicated, or more adversarial, the people most in need of support may be the least able to fight for it.
That is not fair or accessible.
Broader Consequences
Reducing NDIS access will not reduce disability.
It will increase pressure elsewhere.
Families will burn out. Children will lose early and consistent support. Disabled adults will deteriorate. Informal carers will be pushed further past capacity. Schools, hospitals, mental health services, GPs, and emergency systems will carry the consequences.
In the long term, this will likely cost more — financially, socially, emotionally, and medically.
The NDIS should be focused on early support, prevention, capacity building, and stability, not forcing people to reach crisis before their needs are believed.
Conclusion
I ask that any changes to the NDIS protect access for people with autism, pyschological social disability, developmental disability, chronic functional impairment, and complex needs.
I also ask that the government recognise the impact on families where children are NDIS participants and parents are disabled themselves.
My family relies on the NDIS for my children, and I am applying because I also need support to function safely and sustainably. We are not asking for luxury. We are asking for the support required to live with dignity, stability, and safety.
People do not stop needing support because eligibility is narrowed. Families do not become less overwhelmed because services are removed. Disabled people do not become more independent by being left without help.
The NDIS must remain accessible, individualised, and based on functional need.