Submission 1909

Dear Senate Community Affairs Legislation Committee,

I am writing to express my serious concerns about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

This Bill should be about creating a sustainable budget, but we also need sustainable families. What this current Bill appears to do is shift costs onto other government systems, including health, education, child protection, and eventually the justice system.

As a family that has taken in and cared for many children with disabilities through to adulthood under the DFFH child protection and out-of-home care system, we understand firsthand the risks involved when individuals are not assessed based on their whole-of-life disabilities and conditions. The consequences could be life-altering.

We currently manage six NDIS plans within our non-biological family system. It would cost governments significantly more if we were forced to relinquish our caring roles due to these individuals no longer receiving adequate supports because of funding cuts. We have already saved both the Victorian and Federal Governments millions of dollars by dedicating our lives to raising and supporting individuals who would otherwise likely remain in costly systems of care.

There is currently little to no support available through DFFH in Victoria, as disability-related supports are expected to be funded by the NDIS. However, the NDIS does not adequately fund the additional supports required for individuals with child protection involvement.

Support Coordination of one hour per week is not case management and there is no social work component.

DFFH placements should have access to at least 52 days of respite annually, rather than the limited amount available through group-funded Short Term Respite (STR).

There is also no trauma counselling provided for DFFH placements, despite clear evidence that individuals with disabilities who are removed from their parents or home environments at a young age require trauma-informed therapeutic support.

Psychology alone is not always an appropriate response to disability-related needs. Telling families to “get a mental health plan” does not address the complexity of these situations.

Twelve years ago, we were promised access to complex planners, yet this has never occurred. Instead, we have repeatedly dealt with planners who have little or no

Submission 1909

We have demonstrated a deep understanding of intersectional systems or trauma-informed practice relating to displaced children with disabilities. We opened our home and our lives to children no one else wanted, and this is how we have been treated.

We have attended planning meetings where we explained that we care for three participants from Child Protection out-of-home care situations and that additional supports and services are essential to prevent the risk of relinquishment. Yet planners often had no understanding of what we were explaining or the complexity of our situation.

We have protected these young people from the traumatic upbringing often associated with residential care, yet this has never once been acknowledged.

We already face the ongoing frustration of never being approved the supports actually required to meet these individuals’ disabilities and conditions. Imagine how much worse this will become if their full disabilities and needs are no longer properly recorded within the planning process.

Currently, our lives revolve around constant reassessments. We are repeatedly required to review both adult participants’ plans every single year, and often multiple times a year. Funding is routinely approved at group support ratios that have never been supported by any assessment, report, qualified therapist, or medical practitioner. This does not uphold the human rights of people with disabilities.

One example involved extensive and invasive assessments over a three-year period, costing approximately $37,000, only for the reports to seemingly not even be read. There was no planning meeting, no phone call, and they could not even get the participant’s age correct.

The ongoing requirement for updated assessments and reports at every review creates unnecessary stress and trauma for participants and their families and carers. It also reduces actual therapy and support time, making it an extremely inefficient and costly use of NDIS funding.

Yearly assessments should instead remain valid for a number of years unless significant changes occur. This alone could save billions of dollars while also reducing distress for participants.

Since the inception of the NDIS in our area, we as carers have not been in a position to return to employment or pursue meaningful and consistent opportunities because our lives are now consumed by managing the complexity of the NDIS system.

We believe the proposed changes will further and significantly impact our family and our ability to continue caring in the future if there is any possibility that the supports

Submission 1909

required will no longer be available because the person’s whole-of-life needs are not being properly assessed.

We only seek the supports necessary to allow our participants to live happy, safe, and fulfilling lives. However, we fear these lives will be placed at risk if this Bill is passed.

The rights of people with disability must remain paramount and should be at the forefront of all decisions. Individuals should continue to have choice and control over their lives.

Forcing individuals to live with others due to reduced funding and lower support ratios takes us backwards toward institutionalised models of care — hidden behind closed doors and isolated from the community because there is insufficient funding for the correct level of support.

This will only increase disability-related needs over time and ultimately cost more, because families like ours may no longer be able to continue in our caring roles.

This is not the future we want for the people we love and care for.

I believe this Bill should not be passed in its current form, as it could have a devastating impact on the lives of people with disabilities and undermine the original intent of the NDIS. There is simply not enough detail for the Senate to make a fully informed decision.

I am particularly concerned about the following aspects of the Bill:

• The shift away from “reasonable and necessary supports.” I fear this change could lead to arbitrary limits on supports rather than focusing on what each individual genuinely requires to live an ordinary life.

• The tighter definition of what supports the NDIS will fund. I am concerned this definition is too narrow and may exclude essential supports that people with disabilities rely on to participate in the community and pursue their goals.

The prospect of a 50% reduction to social and community participation budgets would have devastating consequences for our participants. Thanks to NDIS support, some individuals have developed enough confidence and capacity to volunteer in the community and even earn a wage. These outcomes are only possible because of the supports funded within social and community participation budgets, including employment-related support.

Submission 1909

If this funding is cut, we may be forced to walk away from our caring roles. We are already supporting one individual at risk of homelessness, and instead of being supported ourselves, we feel abandoned by the system.

• The increased powers for the NDIA to require people to undergo assessments or provide information, with the threat of plans being suspended or revoked for non-compliance.

This fails to recognise the many barriers people with disabilities face when engaging with complex bureaucratic processes, especially during periods of crisis or when they have highly complex needs.

Overall, I am deeply worried that this Bill represents a shift away from the original vision of the NDIS — to provide people with disabilities with genuine choice and control over the supports they need to live ordinary lives.

Instead, it appears increasingly focused on cost-cutting rather than improving outcomes for people with disabilities.

This Bill should be paused to allow for genuine co-design with people with disabilities and their families.

I strongly urge the Committee to recommend significant changes to this Bill. At a minimum, there must be meaningful consultation with people with disabilities and representative organisations to ensure any reforms genuinely meet the needs of the people the NDIS was intended to support.

The NDIS is too important to get wrong. We must take the time to ensure this is done properly, with people with disabilities at the centre of the process.

Thank you for considering my submission. I would be happy to provide further information to the Committee if required.

Yours sincerely,