Submission 726
1/06/2026
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
Submitted by:
Rebecca Penfold
Occupational Therapist and Director
Coastwide Therapy Services
Central Coast, NSW
Introduction
I am writing this submission as an Occupational Therapist with more than 30 years experience in the disability sector across government, community and private practice settings, and as the Director of Coastwide Therapy Services on the NSW Central Coast.
Coastwide Therapy Services supports approximately 500 children, young people and adults living with disability and their families. Our team provides services across homes, schools, clinics and community settings and works closely with educators, support workers, Aboriginal health services, family support organisations, crisis accommodation services and other allied health professionals.
I acknowledge that the NDIS must be sustainable and that reform is necessary. No scheme
can continue indefinitely without appropriate safeguards, accountability and financialoversight. However, my concern is that the current Bill appears heavily focused on reducing expenditure without adequately considering the broader social, economic and human costs that may result from reduced access to support.
Throughout my career I have worked both before and after the introduction of the NDIS. I have seen first-hand the difference that timely, individualised supports can make. I have also seen what happens when those supports do not exist.
My submission focuses on the practical implications of the proposed reforms for participants, families, service systems and communities.
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The NDIS has changed lives
The NDIS has enabled many Australians with disability to access supports that were previously unavailable or inaccessible.
I began my career working in a large institution for people with disabilities (Peat Island) and witnessed first-hand the impact of deinstitutionalisation as people moved back into their communities. For many, this was life changing. However, it also highlighted the importance of having the right supports around people, rather than simply changing where they lived.
With the introduction of the NDIS, I saw a further shift. People were increasingly able to access supports that reflected their individual needs, interests and goals. Shared living arrangements were better matched, young people were able to move out of home through planned transitions rather than crisis placements. Supports became more individualised and focused on helping people build meaningful lives within their communities, not on the fringes; but truly within their communities.
For children, this has meant access to early intervention during critical developmental periods. For young people, it has meant support to develop independence, access education, build friendships, participate in their communities and prepare for employment and life after school. For adults, it has meant greater choice, dignity, participation and individualised supports reflective of their unique needs; not simply their diagnosis.
Importantly, many of the benefits of the NDIS are not immediately visible in budget papers. The teenager who learns to catch public transport independently and no longer requires a support worker every time they want to meet friends. The young person who secures their first job and begins contributing to their community with a sense of pride, purpose and belonging.
The child who remains successfully engaged in school because the right supports have been put in place, reducing the incidence of school refusal, suspension and exclusion; allowing parents to remain in the workforce.
The parent who is able to continue caring for their child at home because they have adequate support, rather than reaching crisis point and considering relinquishment of care into a more restrictive environment.
These outcomes are rarely the result of a single service or short-term intervention. They are often the product of years of individualised, interest-driven and goal-directed supports, coordinated across allied health, education, disability services and families.
While these supports require investment, they frequently reduce long-term dependence on
government systems and improve participation across education, employment andcommunity life.
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Cost shifting is not cost saving
One of my greatest concerns regarding the proposed reforms is that they may simply shift costs from the NDIS to other already stretched systems rather than genuinely reducing expenditure. In my current work, I regularly support families at risk of crisis due to the complexity and intensity of their child’s support needs.
When disability supports are reduced, the need does not disappear. The cost does not disappear. It simply moves elsewhere. Instead, those costs are often absorbed by:
- families and unpaid carers
- schools and educators
- emergency departments
- mental health services
- child protection services
- housing and homelessness services
- aged care and community care systems As an Occupational Therapist, I work with families who are already experiencing significant levels of stress, exhaustion, burnout and financial pressure. Throughout my career I have worked with families who have openly discussed relinquishing the care of their child because they could no longer safely meet their support needs without adequate assistance.
Sadly, I have also seen this occur.
When families reach crisis point, the outcomes are rarely positive for anyone involved. Children and young people become increasingly isolated from their families and communities. Siblings are impacted, parental mental health deteriorates and relationships break down. In many cases, governments ultimately fund far more intensive and expensive supports than would have been required had preventative supports been available earlier.
The cost of planned respite, community access supports, behaviour support, therapy and family-centred intervention is often substantially lower than the cost of crisis responses, out of-home care, intensive supported accommodation, hospital admissions or emergency intervention services.
Early intervention is an investment, not a cost
Much of my work involves supporting children and young people with autism, intellectual disability, ADHD, developmental delay, cerebral palsy, genetic conditions and complex psychosocial needs. The evidence supporting early intervention is well established. As Occupational Therapists, we see every day the difference that timely support can make to a
child's communication, emotional regulation, participation, independence, educationalengagement and long-term outcomes.
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However, my concern is not simply about reducing therapy funding. My concern is that the proposed reforms appear to be tightening eligibility and access to supports at a time when the alternative systems intended to support these children are not yet established, funded or accessible.
Over the past 12 months, I have already seen children removed from the NDIS who continue to experience significant functional challenges, yet have no meaningful alternative supports available to them. Families are being told that foundational supports will provide assistance, however in many communities, such as ours, these supports do not yet exist in any practical or accessible way.
For many families, the reality is that the choice becomes either privately funding intervention or going without support altogether. This creates significant inequity. Families with financial resources may be able to purchase therapy privately. Families already experiencing financial hardship cannot and these are the children who fall through the cracks, remain the most vulnerable and require more support into the future.
The proposed changes around eligibility, permanence and treatment requirements also raise concerns for children and families who already face barriers accessing healthcare. I am concerned that increasingly complex evidentiary requirements will unintentionally exclude some of the very children and families most in need of support.
Across regional communities, families often experience:
- lengthy waiting periods for specialists
- workforce shortages
- travel barriers
- financial barriers
- long public health waitlists
- difficulty obtaining reports and evidence required by the NDIA I am also concerned that many of these discussions fail to acknowledge what existed prior to the NDIS.
Throughout my career I have worked both before and after the introduction of the NDIS. Prior to the Scheme, it was not uncommon for families to wait years for allied health intervention through public systems. Many children received support only after difficulties had become entrenched and significantly more difficult to address.
As children grew older, their support needs often became more complex and more costly. Difficulties that could have been addressed earlier frequently escalated into challenges requiring far greater intervention later in life.
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The lesson from that period was not that early intervention was unnecessary. The lesson was that delayed intervention often resulted in poorer outcomes, greater family stress and higher long-term costs.
I am concerned that reducing access to early intervention and capacity-building supports, while simultaneously tightening eligibility criteria and introducing barriers to access, risks repeating mistakes we have already made before. It may reduce expenditure in the short term, but at the cost of poorer outcomes for children, greater pressure on families and increased demand on already stretched education, health and community systems in the years ahead.
Community participation is not recreation
Community participation supports are often misunderstood. They are frequently portrayed as social activities, recreational programs or lifestyle supports. In reality, they are often the mechanism through which people with disability develop independence, build relationships, contribute to their communities and reduce reliance on family members over time.
What concerns me about the proposed reforms is the apparent assumption that if these supports are reduced, families will simply absorb the additional caring responsibilities.
This does not reflect the reality I see every day.
Many families are already providing extraordinary levels of care well beyond what would typically be expected of parents, siblings, partners or extended family members. Many are balancing complex medical needs, behavioural support, personal care, supervision, transport, advocacy and coordination of multiple services while also trying to maintain employment, relationships and their own physical and mental health.
The proposed emphasis on informal supports rand parental responsibility, risks overlooking the cumulative impact of caring over years and, in many cases, decades. In my work I regularly meet parents who have left the workforce to provide care, grandparents acting as primary carers, siblings whose lives have been significantly shaped by caring responsibilities, single parents providing near constant supervision and care, and ageing parents who are increasingly concerned about who will support their adult child when they are no longer able to do so.
These informal contributions save governments millions of dollars every year, yet they are often treated as an unlimited resource. They are not. The question should not simply be whether a family can continue providing care today. It should also consider whether that arrangement is sustainable in five, ten or twenty years.
Prior to the NDIS, it was common for people with disability to participate primarily in group based disability programs. While these programs provided social opportunities, they often resulted in disabled people spending their time predominantly with other disabled people
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rather than participating in the broader community. Access to individualised supports that enabled people to pursue their own interests, build natural relationships, access meaningful activities and contribute to their communities was far more limited.
The NDIS represented a significant shift away from “one-size-fits-all” disability services towards individualised supports built around a person’s goals, interests and aspirations. By reducing community participation supports we risk reversing many of the gains made over the past two decades in relation to genuine inclusion.
Reducing community participation funding risks unintentionally pushing people back towards more congregate and segregated models of support because they are often viewed as more cost effective (with lower support ratios). While group programs have an important place for some people, they should not become the default option simply because individualised supports are no longer available.
True inclusion is not achieved by bringing groups of disabled people together. It is achieved when people with disability have the same opportunities as everyone else to choose where they go, who they spend time with and how they participate in their communities.
Concerns regarding functional capacity, permanence and automated decision-making
As Occupational Therapists, assessing functional capacity sits at the core of our profession. It is something we do every day across homes, schools, workplaces and communities. For this reason, I have significant concerns regarding the proposed changes to how functional capacity may be assessed and interpreted under the Bill.
In my experience, functional capacity cannot be separated from the environments in which people live, the supports available to them, or the barriers they face.
Many of the people I support function very differently depending on:
- the physical and social environment
- available supports and accommodations
- communication supports
- sensory demands
- fatigue and energy levels
- anxiety and mental health
- executive functioning demands
- pain and medical factors A person may appear highly capable during a short assessment yet be unable to sustain that level of functioning across a full day, week or month. Capacity observed in a 60-minute assessment is not necessarily capacity that can be sustained consistently across everyday life. These challenges are often only fully understood through a whole-of-person assessment conducted over time and across environments.
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I am particularly concerned about participants whose disabilities fluctuate or whosechallenges are not immediately visible. Many of the children and adults I support can appear capable in structured environments but experience significant difficulties with planning,
organisation, emotional regulation, communication, sensory processing, fatigue andparticipation in everyday life.
Standardised independent assessment approaches risk oversimplifying disability andunderestimating support needs, particularly for people with autism, ADHD, psychosocial
disability, neurological conditions, intellectual disability and complex developmentalpresentations.
I am also concerned about proposals that may require participants to continuallydemonstrate that they have exhausted treatment options before impairments are considered permanent. The children and adults we support have disabilities that are lifelong. Many therapies are designed not to cure disability, but to maintain function, prevent deterioration and maximise participation.
Access to support should not depend on a person’s ability to continually prove they have
exhausted every possible intervention, particularly when many families already facesignificant barriers accessing specialists, public health services and affordable therapy.
Finally, I have concerns regarding the increasing use of automated decision-making within a system that supports some of Australia’s most vulnerable citizens. The NDIS exists because disability is complex, individual and highly influenced by context. Many of the participants I support do not fit neatly into categories or standardised assessment tools. Their support needs emerge through understanding their daily lives, their environments, their relationships and the barriers they face.
While technology may have a role in improving administrative efficiency, I do not believe decisions that significantly impact a person’s eligibility, funding or support needs should be made without meaningful human oversight. The consequences of an incorrect decision can be profound, and cause significant harm to disabled individuals and their families.
Workforce and regional service concerns
As the Director of a regional allied health service, I am acutely aware that workforce sustainability cannot be separated from participant outcomes. Recruiting and retaining experienced therapists is increasingly difficult. New graduates are important to the future workforce, however children and adults with complex needs also require access to experienced clinicians capable of undertaking advanced assessment, intervention planning, risk management and assistive technology prescription.
Over recent years providers have faced increasing administrative burden, compliance requirements, workforce shortages and funding uncertainty. While these reforms focus heavily on participant expenditure, there appears to be limited consideration of the impact
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on the workforce responsible for delivering those supports. A sustainable NDIS requires more than sustainable participant budgets. It requires a sustainable workforce.
Conclusion
I support the need for NDIS reform and recognise the importance of ensuring the Scheme remains sustainable for future generations.
However, sustainability must be considered more broadly than annual expenditure targets. Over the past 30 years I have seen disability support evolve from institutional care, to community living, to the individualised and person-centred approach that underpins the NDIS. While reform is necessary, we must be careful not to lose sight of the progress that has been made.
My concern is that the proposed reforms risk reducing expenditure in the short term while increasing costs and harm elsewhere. Throughout this submission I have outlined concerns regarding eligibility, access to early intervention, increasing reliance on informal supports, community participation, functional capacity assessments and automated decision-making. While each of these issues may appear discrete, together they have the potential to fundamentally alter how disabled people access support and participate in our communities.
The true measure of sustainability is not simply what we save today, but whether people with disability are able to live meaningful lives, participate in their communities and avoid crisis, tomorrow.
I urge the Committee to carefully consider the broader social and economic consequences of these reforms and to ensure that any changes preserve the original intent of the NDIS: supporting people with disability to live meaningful, safe and participatory lives.
The Committee should also carefully examine whether these reforms ought to proceed in their current form without stronger safeguards, meaningful consultation with people with disability and their families, and accessible foundational supports already established within the community.
Reform should strengthen the Scheme for future generations, not unintentionally reduce access to the very supports that enable people with disability to participate, contribute and thrive