Submission 85 — Name suppressed — Submissions to Foundational and disability supports available for children and young people in New South Wales | External submission

Submission

No 85

INQUIRY INTO FOUNDATIONAL AND DISABILITY

SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG

PEOPLE IN NEW SOUTH WALES

Name: Name suppressed

Date Received: 29 August 2026

Partially

Confidential

Submission to the NSW Legislative Council

Select Committee on Foundational and Disability Supports

Available for Children and Young People in New South Wales

I welcome the opportunity to make a submission following the reopening of submissions to this inquiry. I support the objective of improving foundational and disability supports for children and young people. However, I am concerned that reform of disability services can create serious consequences when existing supports are reduced or withdrawn before adequate alternatives are actually available. Governments must be extremely careful that the transition between the NDIS, foundational supports and state-based services does not create new gaps for children, young people and their families. The fundamental test should be simple: Is the child receiving the support they actually need? It should not be enough for one level of government to say that another system is responsible. A child cannot wait while governments argue about jurisdiction.

Foundational supports must actually exist before existing supports are withdrawn The concept of foundational supports may have merit. Not every form of disability assistance necessarily needs to be delivered through an individual NDIS package. Community services, schools, health services, early intervention programs and other accessible supports can all play important roles. However, government must not assume that a service exists simply because a policy says it should exist. Before a person’s existing support is reduced on the basis that their needs can be met through mainstream or foundational services, those services should be:

established;
funded;
appropriately staffed;
geographically accessible;
affordable;
suitable for the person’s disability;
available within a reasonable period; and
capable of providing the actual level of assistance required. A theoretical service is not a support.

A waiting list is not a support. A website is not a support. A referral to another agency is not a support.

There must be no gap between systems The Commonwealth administers the NDIS while NSW remains responsible for many health, education, community and other services. This division creates an obvious danger. A person may be told: “That is not an NDIS responsibility.” They may then approach a NSW service and effectively be told: “That is disability support.” The family is left in the middle. Governments need clear responsibility agreements so that people are not repeatedly redirected between agencies. Where responsibility is genuinely disputed, there should be a mechanism for governments to resolve that dispute without interrupting essential support to the child. The family should not become the messenger between government systems.
No child should lose support during a transition Continuity must be a fundamental safeguard. Where governments change eligibility, funding responsibilities or service models, existing support should ordinarily continue until the replacement service is actually available. There should be no cliff edge. This is particularly important for children and young people with substantial disability, developmental delay, communication difficulties or complex support needs. Loss of established therapy, support workers, respite or other assistance can affect not only the individual but their entire family.
Children with significant disability must not be forced into generic programs Foundational supports should complement individualised disability support rather than replace it where individual support is necessary. A group program or general community service may be appropriate for one child and completely inappropriate for another. Disability exists across an enormous spectrum.

Children may have very different needs involving:

communication;
behaviour;
mobility;
personal care;
sensory regulation;
feeding;
learning;
social interaction;
supervision; or
complex medical needs. Government should resist creating a one-size-fits-all definition of adequate support.

Non-speaking and minimally speaking young people require particular protection Young people who are non-speaking or have very limited verbal communication can be especially vulnerable within complex service systems. Their inability to easily explain what they need does not reduce their need. It increases the responsibility upon systems around them. Access to appropriate communication supports, including augmentative and alternative communication where suitable, can affect a person’s:

independence;
education;
relationships;
safety;
ability to express pain or distress;
ability to report mistreatment;
participation in decisions; and
quality of life. Communication support should therefore be recognised as fundamental rather than optional.

The transition to adulthood must not become another cliff edge The transition from childhood into adulthood can create major uncertainty. A person does not suddenly cease to have disability-related needs because they turn 18. Yet families may encounter changes involving:

school;
disability services;
healthcare;

decision-making;
employment programs;
day programs;
transport;
respite;
accommodation;
Centrelink; and
NDIS arrangements. Transition planning should begin well before a young person leaves school. Families should receive clear information about what will change, what will continue and who is responsible for arranging the next stage. Turning 18 should not mean falling off a service cliff.

Families and carers are part of the support system The impact upon families and carers must be taken seriously. Many parents provide extraordinary amounts of unpaid care. They may assist with:

personal care;
meals;
transport;
appointments;
communication;
behavioural support;
medication;
supervision;
advocacy;
paperwork; and
coordination between services. When formal support is reduced, the need usually does not disappear. The work transfers to the family. Government savings can therefore represent hidden costs imposed upon carers. Those costs may include lost employment, reduced income, exhaustion, social isolation and deterioration in the family’s ability to continue providing care.

Respite is preventative support Respite should not be regarded as a luxury. For families providing intensive care every day, appropriate respite can help maintain the caring arrangement. Without it, carers can reach exhaustion or crisis.

The eventual government cost of family breakdown, emergency intervention or unsuitable accommodation may be substantially greater than the cost of providing reasonable respite earlier. Policy should therefore recognise respite as preventative infrastructure.

Carers should not have to reach breaking point to qualify for help Systems sometimes respond more readily once a family is already in crisis. That is backwards. Support should aim to prevent crisis. Families should not have to demonstrate that they are incapable of continuing before assistance becomes available. Government should recognise warning signs such as:

extreme carer fatigue;
inability to maintain employment;
repeated service breakdown;
escalating behavioural concerns;
increasing supervision requirements; and
absence of informal support networks. Earlier intervention can prevent much more serious consequences.

Regional and rural access requires specific solutions Access to disability and allied-health services can be substantially more difficult outside metropolitan areas. A service technically existing somewhere in NSW does not mean it is accessible to a regional family. The Committee should examine:

travel distances;
waiting periods;
shortages of allied-health professionals;
availability of specialists;
workforce turnover;
transport;
provider choice;
cost of travel;
availability of respite; and
continuity of care. Regional families should not receive a lower practical level of support simply because of their postcode.

Provider shortages can make an approved package meaningless Funding and services are not the same thing. A person may theoretically have funding but still be unable to obtain assistance because no suitable provider is available. Governments should measure actual service utilisation and unmet demand, not simply approved funding. Data should identify areas where participants consistently cannot spend allocated funds because providers do not exist or have long waiting lists. That is a service-system failure, not evidence that the support was unnecessary.
Workforce shortages need long-term solutions Disability support requires a stable and skilled workforce. Governments should consider:

training;
pay and conditions;
professional development;
regional incentives;
affordable housing;
travel;
workforce retention;
career pathways; and
appropriate supervision. Continuity matters particularly for people who rely upon established relationships and routine. Constant turnover can itself be destabilising.

Diagnostic delays should not prevent early assistance Children can wait significant periods for developmental or diagnostic assessments. Early support should not unnecessarily depend upon obtaining a particular diagnostic label first. Where developmental concerns are evident, families should be able to access appropriate early assistance while assessment continues. Waiting months or years for a diagnosis during an important developmental period can result in opportunities being lost.
Parents should not have to become professional system navigators Disability systems are extraordinarily complicated. Families can be expected to understand:

NDIS rules;
NSW health services;
education systems;
community programs;
assessments;
funding categories;
service agreements;
reviews;
appeals; and
multiple government departments. Families caring for a child with substantial needs may have the least spare time and energy to navigate such complexity. Independent navigation and advocacy should be readily available. Information should be written in plain English and there should be a clear place families can go when they simply do not know which system is responsible.

Review and appeal rights must be accessible Where significant assistance is reduced or withdrawn, families should receive understandable reasons. Those reasons should explain:

what changed;
why it changed;
what evidence was considered;
what alternative support is expected to replace it;
where that support can actually be obtained; and
how the decision can be challenged. Review mechanisms must be accessible. A right to appeal is of limited value if exercising it requires months of paperwork, legal knowledge or expense.

Evidence from families must be respected Parents and carers often know the person receiving support better than anyone else. Professional evidence remains important, but lived experience should not be dismissed. Families observe what happens outside a short clinical appointment. They know whether a person can safely perform a task consistently in everyday life. Assessments should therefore consider real-world functioning rather than relying solely upon what a person can demonstrate once in a controlled setting.

Young people themselves should be heard Wherever possible, children and young people should participate in decisions about their own support in ways appropriate to their communication and cognitive abilities. This includes people who communicate differently. Consultation should not be limited to people capable of completing conventional surveys, attending meetings or explaining themselves verbally. Government should actively create accessible ways for people with communication disability and intellectual disability to express preferences.
Families should not repeatedly have to prove permanent disability Where a condition is permanent and a person’s fundamental impairment is not expected to disappear, systems should minimise unnecessary repetitive reassessment. Reviews may legitimately consider whether needs or circumstances have changed. However, requiring families continually to prove the existence of an established permanent disability creates unnecessary cost, stress and administrative burden. Resources would be better directed towards determining whether current supports remain appropriate.
Funding decisions should consider long-term consequences Reducing support can appear to save money in the short term. The long-term consequences may be much more expensive. Loss of early intervention can increase later support needs. Loss of respite can contribute to family crisis. Loss of therapy can reduce independence. Loss of communication assistance can increase isolation and vulnerability. Poor transition planning can result in young adults having nowhere appropriate to go after leaving school. Governments should assess the whole-of-life and whole-of-government cost of withdrawing support.
Foundational supports require secure funding If foundational supports are to carry greater responsibility in Australia’s disability system, they must be properly funded. They cannot depend primarily upon short-term grants and pilot programs. Families need to know that services will continue. Providers need funding certainty to employ and retain staff.

Governments should publish clear information about:

services available;
eligibility;
locations;
capacity;
waiting times;
funding duration; and
outcomes. Foundational support must become real infrastructure, not an aspiration.

Government accountability must follow the person across systems Governments should publish data showing what happens to people whose supports change. If someone leaves or receives reduced NDIS assistance because their needs are expected to be met elsewhere, government should determine whether those needs actually were met elsewhere. Otherwise people can simply disappear statistically between systems. Success should not be measured by how many people are removed from one program. It should be measured by whether people are receiving appropriate support and achieving better outcomes.

Recommendations

I recommend that the Committee:

require foundational supports to be operational, funded and accessible before relying upon them as replacements for existing individual support;
establish continuity-of-support protections during major disability-system transitions;
ensure children and young people do not fall between Commonwealth and NSW responsibilities;
preserve individualised assistance where generic foundational supports cannot adequately meet a person’s needs;
give particular attention to non-speaking and minimally speaking children and young people and access to appropriate communication support;
strengthen transition planning for young people approaching adulthood;
recognise the substantial contribution and needs of family carers;
treat appropriate respite as preventative support rather than a discretionary luxury;
provide earlier assistance before families reach crisis;

  establish specific regional and rural access strategies;

 measure actual service availability and utilisation rather than funding allocations

alone;

 develop long-term workforce strategies, particularly for regional NSW;

 allow appropriate early assistance while children await diagnostic assessment;

  provide accessible independent navigation and advocacy;

  require clear reasons and practical review rights when significant supports are

reduced;

  give appropriate weight to family and carer evidence concerning real-world

functioning;

  ensure children and young people can participate in decisions through accessible

communication methods;

  reduce unnecessary repetitive reassessment of established permanent disability;

  assess the long-term and whole-of-government consequences of reducing supports;

  provide secure and transparent funding for foundational-support services; and

  track outcomes when people move between the NDIS, foundational supports and

NSW services so that nobody simply disappears between systems.

Conclusion

Reforming Australia’s disability-support system is an enormous undertaking. There may be good reasons to develop stronger community and foundational services. But reform should never begin by removing one form of support and hoping another system eventually fills the gap. Build the replacement first. Make sure it exists. Make sure it has staff. Make sure people can access it. Make sure it is appropriate for the individual. And only then consider how responsibilities should transition. For a child with developmental delay or disability, months or years without appropriate assistance can have consequences that cannot simply be repaired later. For a young person with substantial lifelong disability, turning 18 does not make those needs disappear. And when formal support is removed from a family, the care itself does not disappear. Someone still has to provide it. Too often, that person is an exhausted parent or carer. The success of foundational-support reform should therefore not be measured by reductions in NDIS expenditure or movement between government programs. It should be measured by something much more meaningful: whether children and young people with disability are actually receiving the support they need to live safe, included and fulfilling lives