Submission 207

To whom it may concern, I am writing as the sole parent and primary carer of three children who are participants in the NDIS.

I support efforts to improve the sustainability, accountability, and integrity of the NDIS. Families need a scheme that is well managed, protected from misuse, and able to continue supporting people with disability into the future.

However, I am deeply concerned that many proposed changes appear to be designed around assumptions that do not reflect the lived reality of many families.

I am a single parent caring for three children with various disabilities. I do not have meaningful informal supports available to absorb gaps in care, service shortfalls, or increasing administrative demands.

In addition to the already significant day-to-day demands of caring for three disabled children, our family has also been navigating the impacts of family violence and ongoing family law proceedings, creating additional stress, instability, and emotional burden.

I include this context because policy decisions do not occur in isolation from people’s real lives.

Many reforms appear to assume families have spare capacity, practical support, financial flexibility, emotional resilience, and time to manage increasing complexity.

For some families, that may be true.

For others, including mine, it is not.

When systems become harder to access, more rigid, or more administratively burdensome, the impact is not inconvenience. It creates genuine risk to child wellbeing, family stability, and carer sustainability.

Children’s disability support needs are not static.

One of my strongest concerns is any move toward more rigid planning, fewer opportunities to review supports, or systems that assume children’s support needs remain stable over time.

Children’s needs change rapidly.

Support requirements can increase significantly due to:

• developmental transitions
• school changes
• puberty
• mental health deterioration
• changing communication needs

Submission 207

• trauma responses
• increased sensory challenges
• safety risks as children grow physically larger while remaining developmentally vulnerable

A plan that was appropriate several months earlier may become inadequate or unsafe.

Children should not be expected to wait for administrative timelines to catch up when their needs change in real time.

Functional assessments do not always reflect lived reality.

I am concerned about increased reliance on standardised assessments or narrow interpretations of functional capacity.

Children with autism, intellectual disability, communication difficulties, behavioural challenges, trauma histories, or complex support needs do not always present consistently.

A child may:

• mask difficulties in unfamiliar environments
• temporarily comply with unfamiliar adults
• present differently in structured appointments than at home or school
• have a “good day” that is not representative of daily functioning

A short assessment cannot always capture:

• emotional dysregulation
• supervision needs
• constant prompting
• communication breakdown
• behavioural risks
• elopement or safety concerns
• the cumulative impact on family functioning

Decisions about support should reflect real-world functioning over time, not isolated snapshots.

Informal supports are not unlimited—and some families have none

A major concern with proposed reforms is the apparent assumption that families can absorb reduced formal supports through informal care.

This assumption is unrealistic and inequitable.

Not every family has:

• a second parent available to share care
• grandparents or relatives able to assist

Submission 207

• friends who can provide practical support
• financial resources to privately replace lost supports
• flexible employment that allows attendance at endless appointments, reviews, or assessments

As a single parent caring for three children with disability, I am responsible for every appointment, every school issue, every therapy arrangement, every behavioural crisis, every transport need, every safety concern, and every administrative task associated with the NDIS.

There is no one to hand over to when systems become harder to navigate.

The idea of “informal support” is often discussed as though it is universally available.

For some families, it simply is not.

Policy settings that rely on invisible unpaid caregiving capacity risk unfairly disadvantaging the families already carrying the greatest load.

Administrative burden is already overwhelming

Managing the NDIS as a parent is not straightforward.

It requires families to become administrators, advocates, coordinators, evidence gatherers, and often quasi-legal experts.

Families are expected to:

• coordinate providers
• interpret funding rules
• gather reports
• arrange assessments
• manage reviews
• respond to plan changes
• challenge decisions
• understand eligibility rules
• navigate complaints processes
• monitor compliance

For a family with one child, this is already significant.

For three children, it becomes an extraordinary administrative burden.

For a single parent without informal supports, this burden can become unmanageable.

If the system becomes even harder to access, the likely outcome is not reduced need—it is increased exhaustion, unmet support needs, and worsening outcomes for children.

Community participation is not optional

Submission 207

I am concerned about any changes that reduce access to supports considered “non-essential,” particularly community participation and developmental supports.

For children, these are not luxuries.

These supports help build:

• independence
• emotional regulation
• communication
• social confidence
• resilience
• inclusion
• practical life skills

Without these opportunities, children can become increasingly isolated, dependent, and excluded.

Families become more confined, carer stress increases, and long-term outcomes worsen.

Reducing preventative supports may create far greater costs later through crisis intervention, school disengagement, emergency mental health responses, or family breakdown.

Families in crisis are often least able to navigate barriers

Families already navigating trauma, family violence, separation, court proceedings, or significant instability are often those with the least capacity to manage additional administrative complexity.

Yet these are frequently the families with the greatest support needs.

If access becomes harder, reviews become more rigid, or evidence requirements become more burdensome, families may not miss out because their child does not need support.

They may miss out because they do not have the capacity to fight through increasingly difficult systems.

That is not equity.

Flexibility matters

Disability does not fit neatly into bureaucratic categories.

Families need systems that can respond to real life.

Overly rigid planning, narrow funding definitions, or inflexible rules may lead to:

• essential supports being inaccessible
• funding sitting unused due to provider shortages
• urgent needs going unmet

Submission 207

• children being forced into unsuitable services
• increased family stress and avoidable crisis

Flexibility is not misuse.

For many families, flexibility is what makes the system workable.

Sustainability should not be achieved by shifting burden to families

I understand the importance of protecting the future sustainability of the NDIS.

But sustainability cannot be achieved by reducing access, increasing barriers, or shifting disability support responsibilities onto unpaid family carers who are already stretched beyond safe limits.

When families break down under pressure, the costs do not disappear.

They simply reappear elsewhere:

• health systems
• education systems
• emergency services
• child protection
• mental health services

Preventative, responsive disability support is not only humane—it is practical.

Recommendations

I urge decision-makers to ensure reforms:

• preserve flexibility for children whose needs change rapidly
• allow timely plan reviews when circumstances change
• avoid over-reliance on snapshot assessments
• recognise that informal supports are not universally available
• protect community participation and developmental supports
• reduce administrative burden on families
• ensure children with complex disability are not unintentionally disadvantaged
• account for the realities of single-parent caregiving
• consider the impact on families already experiencing crisis or instability
• meaningfully consult families with lived experience before implementation

For families like mine, the NDIS is not about convenience.

It is about safety, development, dignity, inclusion, and the practical ability to care for disabled children in a sustainable way.

Submission 207

A disability support system should not be built around assumptions that families have unlimited unpaid capacity to absorb whatever the formal system withdraws.

Because many of us do not.

Thank you for considering my submission.

Sincerely,