Harmful Legislation Changes Impacting Son's Supports (Family or carer experience)

Submission 742

Addressing these Harmful Legislation Changes

A submission on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted to: Senate Community Affairs Legislation Committee. Submitted by: AdamSupport Incorporated. All identifying details have been removed to protect privacy. Date: 31st May 2026

CONTENTS

1. About this submission …………………………………………………………………………..……………………. 2

2. What the NDIS has meant for our family ………………………………………………..………………….. 3

3. What the NDIS has meant for our son …………………………………………………..……………………. 4 o The Cliff ………………………………………………………………………………………………………………. 4

4. Disability, segregation, and a broken system ………………………………………………………………. 4 o The cost of doing nothing ……………………………………………………………………………………. 5

   o Before the NDIS, what was segregation and the broken system? ………………………… 5

5. Some of these amendments will cause great harm ……………………………………………….…….. 6 Concern One: Regarding additional Ministerial Powers ……………………………….………..……… 6

Concern Two: Regarding Removal of Section 32K(3A) ……………………………………..………..…. 7

Concern Three: Regarding Section 32K Replacement Amendment (3B) ……………………….. 9

Concern Four: Regarding Section 32L – Assessment of Participant Needs for Supports … 10

Concern Five: Regarding Section 48 – Reassessment of Participant’s Plan …………..…..…… 11

Concern Six: Regarding Use of an Unvalidated Functional Capacity Assessment Tool …… 12

6. What changes need to be considered so the NDIS is sustainable? ………………………………. 12
7. Recommendations to strengthen the NDIS and reduce its cost ……………………………….….. 14 Appendices: Appendice One: How to reduce the costs of the NDIS without harming participants …….… 15

Appendice Two: Statements from concerned NDIS participants and their families …….…… 19

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Submission 742

1. About this submission This submission is prepared by the President of AdamSupport Incorporated who has a son with complex and high disability needs. AdamSupport was initially created by the President and his family, to ensure his son would be fully supported once his aging wife and himself departed this world. It is written from his perspective, with input from committee members with adult children on the NDIS contributing to its many drafts.

AdamSupport is a not-for-profit organisation that provides hands on disability support and advocacy for my son and other people with disabilities.

The last fifty plus years of my adult life has been impacted on through engaging with the complex disability needs of my son, supporting others with disabilities and working with their families. When my son was just four months old, my wife and I were told by the hospital neurologist, to take him home and love him, as he would not live past his teens. Fortunately, he outlived this diagnosis and turned 52 years of age last year. This was not good luck, but rather through working with him, specialists, and our community, in a range of disciplines, building on the skills that were needed, and recognising and building on strengths, no matter how small. Over the past 10 years the National Disability Insurance Scheme has played a major part in our son’s life, by providing necessary supports, and ensuring he has a life worth living.

My background and qualifications are in both Mainstream and Special Education and The Arts. My wife was a Registered Nurse and continues to be a wonderful Mother. It was, and still is, these combined skills that enabled us both to support our son to have opportunities towards a meaningful life.

With extremely high complex needs, our son was rejected several times for support by several large disability organisations and removed from one NDIS registered organisation. This NDIS registered organisation felt they could no longer, safely provide the supports required to keep our son safe. To ensure he was safe and well provided for, we formed AdamSupport Inc.

There is clearly a case for reducing the high costs of the NDIS, but these amendments go way beyond that. If implemented they will turn the current NDIS legislation into a shadow of its former self, directly harm our son, and many others, if it proceeds with these amendments. My son and I appeared before the Productivity Commission in 2011, prior to the NDIS becoming reality. We spoke about our journey over 40 years and the challenges we faced with bureaucracy and broken systems.

Our local Member of Parliament took a personal interest in our son’s life and our family’s situation. She spoke in Parliament about my son and another adult and enabled others and myself to have direct input into the NDIS legislation, which passed in March 2013. It is this background of lived experience, prior to the NDIS, during and after its formation, that enables me to speak with knowledge about the harm that the proposed NDIS amendments will bring to our society’s disabled community.

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I note that the usual timeline for the public to react to changes in legislation via a Senate inquiry is three to six weeks for written submissions. The timeline given in reacting to these NDIS legislation amendments is unnecessarily short and I suspect potentially illegal. This short timeline will have impacted on the capacity of many disabled people, their families, and friends, to react and provide essential and meaningful responses to the Senate to consider.

Due to this extremely short timeline provided for the community to provide written submissions to these amendments, I am only able to focus on a few key areas that I can adequately address in this submission.

I have included statements at the end of this submission from others who will be directly impacted by the amendments proposed in this bill. These are provided as additional information to my submission, and to ensure they have a voice in what is a regrettably short time frame of only two weeks. 2 What the NDIS has meant for our family

When our son became an NDIS participant, our futures changed overnight. Our son’s needs are highly complex. These needs include being non-verbal, having intractable epilepsy, apraxia, ataxia, behavioural management needs and requiring full support for all activities of daily living, mobility, and safety. Our son does not live with us and is currently provided with full 24/7 support from the NDIS. Now in ou r twilight years we can now visit our son, just as his parents and not as his carers. A snapshot of how all our lives were changed by the NDIS follows here.

a. Our son is now having a safe, full, and meaningful life with the full support of his highly qualified workers in the following areas.

o Assistance with Daily Living activities and self-help skills.

o Applying his skills and interests in his home and in his community.

o Attending local community clubs with common interests on a regular basis.

o Continuing to write, publish his poetry and produce art works.

o Attending community art exhibitions, concerts and events and making and retaining friends.

o Walking through local forests and parks and being inspired to produce his personal writing and art works.

b. As aging parents we now have some opportunities to begin to retire fully, maybe get away on long overdue holidays and have time for ourselves.

o We look forward to spending more time on our own passions of music, the arts and living more fully.

o Our son is never too far from our mind. Whilst we visit him regularly, much of our time is still taken up in overseeing his NDIS funding and supporting and training his staff to enable them to better support for him.

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3 What the NDIS has meant for my son

My son loves language. He attends a writing group who set topics each week as writing exercises. The topic for last week was ‘A story that ends with a cliff hanger’ Whilst writing this submission I asked if he could write something for me to include. He has combined the groups topic and his concern about the changes to the NDIS. He is not suicidal and is being well supported. But the last line demonstrates how much distress these amendments, in their current form are impacting on his emotional wellbeing.

THE CLIFF

“The trouble with the NDIS changes are they do not protect the people needing support. I would like to suggest that people’s lives are not something to put into law as suggested. If these changes really mattered, they would offer protection of our rights. Not just put us in boxes to make the budget look good. I personally prefer to have a life and not be governed by the beliefs of bureaucrats. If you continue in this way people will die, and others put at high risk. The NDIS is to change lives and my own life has been challenged since birth. I have been supported by the NDIS for some time now. Please listen to those most impacted by the changes. I feel as though I am standing on the edge of a cliff.

Should I jump? ” 4 Disability, segregation, and a broken system

For many years society thought people with disabilities were adequately catered for. This has never been the case. The NDIS was created to address the many faults in the then systems.

If the proposed legislation amendments in their current form are successful, we will be taken back to those broken times. The ‘Productivity Commission Enquiry Report - Disability Care and Support’ was published on 31 July 2011. This report identified the broken system and provided the way forward for government to work collaboratively with the disabled community.

o I ask that all ministers and interested parties read this report to understand why the NDIS was formed, how it was to be implemented, and how it could be improved.

https://www.pc.gov.au/inquiries-and-research/disability-support/report

It contains many of the solutions that were never implemented by the incoming Government after the NDIS became law. This report identified many of these faults and made recommendations to Government for change which led to the NDIS. The Productivity Commission made the following statement regarding the cost of doing nothing and the benefits the NDIS would bring to the economy.

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The cost of doing nothing

The cost of doing nothing would be the persistence and increasing intensity of many deficiencies. Moreover, governments could not feasibly do absolutely nothing. They would need to patch up their systems to arrest the vicious cycle produced by systems in crisis. In effect, all governments face future liabilities with their current unstable systems. The implication of this is that the upfront fiscal costs, while significant, are partly offset by eliminating the hidden future liabilities of the current system. Moreover, from an economic perspective, the benefits of the NDIS will exceed the costs.

Source: ‘Productivity Commission Enquiry Report - Disability Care and Support’ Volume 1 / page 7 / 2011

Before the NDIS, what was segregation and the broken system?

a. The segregated and broken system for the disabled can be traced way back to the 1870’s. This was when the Australian states formed Departments of Education. From that point onwards, every child then had the right to an education entrenched in legislation.

This right, however, did not include children with disabilities. They came under the responsibility of the health department and were denied real education opportunities for the next 100 plus years. Through not initially being part of the regular school system, people with disabilities were placed onto a different social and economic group. This is a battle that still continues today, and one that is entrenched in the thinking of the draconian amendments outlined in this bill.

b. All states had different approaches to support people with disabilities. Some states viewed supporting children and adults with disabilities as necessary and a rite of societies passage. Other states viewed people with disabilities as an added extra burden and unnecessary state cost.

c. Segregation of many people unfortunately still occurs throughout our society. For the disabled however, segregation commences at the beginning of one’s diagnosis. If you were a child, you were subjected to segregated ‘special’ schools, community activities and then possible work opportunities. Often ending up in sheltered workshops, out of sight, out of mind and being paid a pittance for performing menial tasks.

d. If you lived in one state and had received a wheelchair from that state, and you wished or needed to go and live in another state, the wheelchair belonged to the state you had received it from. You were not permitted to take it across the border. It had to be left behind. You then had to apply for another in your new state. The fact you qualified in one state did not mean you automatically would receive another, or even have the same degree of support in another state.

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e. Families and parents were put under immense pressure if they had a child with a disability. Sourcing support wherever they could, mothers and fathers having to work shifts at home to ensure their child was going to be okay.

f. As the breadwinner in my own family, I had the opportunity to get away from my disabled son’s life for eight hours each day. I would come home and find my wife totally exhausted.

g. While l was away working, she had the additional tasks of looking after our son. Numerous incontinence and behaviour issues, managing epileptic seizures, implementing physio and OT programs, checking to make sure the home environment was continually safe, and interacting every minute to provide opportunities for him to communicate and interact as other children do naturally. Our other three children missed out on things because of the time needed to cater for our one complex son.

h. The NDIS when it arrived, despite its current faults, was a game changer for our son, my wife, our family, and myself.

i. The disability community is highly concerned, and very alarmed, that the current amendments to the NDIS legislation will move many of their people back to those earlier segregated and broken system times. Governments on all sides must have meaningful collaborative conversations with the disabled community about the high costs, which clearly must be bought under control.

5 Some of these amendments will cause great harm.

Some of the amendments will directly push many NDIS participants back into the previously mentioned broken systems. Potentially back even further, which is more distressing as many of the state systems that were available before the NDIS are now no longer available. I am unable to give this submission full justice due to the extremely short timeframe the Government has allowed. There are other concerns I will not have time to address in this submission.

Following are some of my key concerns that will cause harm if these amendments are passed in its present form.

Concern One: Concern regarding additional Ministerial Powers

Proposed changes

The proposed legislation would allow important eligibility thresholds and funding rules to be determined through rules and legislative instruments that have not yet been published.

Section 34A would also allow the Minister to reduce funding amounts for specified groups of supports by legislative determination.

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Concern

These changes may significantly increase Ministerial discretion over participant funding and eligibility without sufficient transparency or safeguards.

As the detailed rules have not yet been released, participants and the disability sector are being asked to support reforms without understanding:

o How eligibility thresholds will be applied.

o Which supports may be reduced.

o How funding reductions will be determined, or

o What protections will exist for participants with complex or changing needs.

There is also concern that broad powers to reduce funding for groups of supports could prioritise budget savings over individual participant needs.

Participants are unlikely to have direct input into these determinations, creating a risk that decisions may rely heavily on administrative or financial considerations rather than a participant’s actual functional needs and circumstances.

This may particularly affect participants with high, complex or fluctuating support needs.

Recommendation

It is recommended that:

o Draft rules and eligibility criteria be publicly released before legislative changes are finalised.

o Any Ministerial powers to reduce funding be subject to clear safeguards, transparency and independent oversight.

o Participants and the disability sector be formally consulted on proposed rules and determinations, and

o Legislation explicitly require that funding decisions remain centred on individual participant needs and functional impact, rather than broad cost-reduction measures.

Consideration should also be given to limiting the scope of Section 34A to ensure funding reductions cannot occur without appropriate evidence, consultation and review mechanisms.

Concern Two:

Concern Regarding Removal of Section 32K(3A)

Current wording proposed for removal

Section 32K(3A) currently requires the Minister to ensure that NDIS rules:

“adequately take account of the variety of factors that may affect a participant’s need for NDIS supports.”

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The legislation also recognises that disability support needs can be influenced by:

o Environmental factors, and

o The interaction between multiple impairments, including impairments that may not independently meet access requirements.

Concern

The removal of subsection 32K(3A) may reduce recognition of the complex and individual nature of disability support needs.

A participant’s functional capacity and support requirements are rarely shaped by a single factor alone. Environmental barriers, co-occurring conditions, psychosocial impacts, and the interaction between multiple impairments can significantly affect a person’s daily functioning and their need for supports.

Without this provision, there is a risk that future rules or funding decisions may:

o Rely on narrower interpretations of disability and support needs.

o Place less weight on individual circumstances.

o Reduce flexibility in planning and budgeting decisions, and

o Disadvantage participants whose support needs arise from combined or interacting factors.

This could lead to less equitable outcomes for participants with complex needs.

Recommendation

It is recommended that subsection 32K(3A) remain in the legislation.

Retaining this provision helps ensure that:

o NDIS funding decisions continue to recognise the diversity and complexity of disability support needs.

o Rules are developed with consideration of individual circumstances and environmental factors, and

o Participants with multiple or interacting impairments are not unintentionally excluded or disadvantaged.

If amendments are considered necessary, the core principle requiring consideration of the “variety of factors” affecting support needs should be explicitly preserved within the legislation or associated rules.

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Concern Three:

Concern Regarding Section 32K Replacement Amendment (3B)

Proposed change

The proposed amendment would allow methods for determining participant funding amounts to be set through NDIS rules.

This may shift decision-making away from individual participant circumstances and toward broader funding methodologies determined by legislative rules.

Concern

There is concern that this change could weaken personalised decision-making within the NDIS.

Participants with disability often require supports that are highly individualised and responsive to complex circumstances. Standardised funding methods or restrictive rules may not adequately reflect:

o The impact of multiple or fluctuating conditions.

o Individual functional capacity.

o Environmental and social factors, or

o Risks to participant health, safety and wellbeing.

If funding methods are primarily driven by predetermined rules or budget controls, participants may receive supports that do not fully meet their actual needs.

This could reduce participant protections and increase risks for people with complex, high-support or vulnerable circumstances.

Recommendation

It is recommended that the current protections within subsection 32K(3B) be retained or strengthened to ensure funding decisions remain centred on the individual participant and their functional support needs.

Any funding methodology introduced through NDIS rules should:

o Preserve flexibility for individual circumstances.

o Include safeguards for participants with complex or high-risk needs.

o Allow for clinical and professional evidence to be properly considered, and

o Ensure participants retain access to review and appeal processes.

The legislation should continue to prioritise personalised and reasonable supports rather than broad standardised funding approaches.

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Concern Four: Concern Regarding Section 32L – Assessment of Participant Needs for Supports

Proposed change

The proposed wording would require assessments to have regard to information prescribed through NDIS rules.

This may increase reliance on standardised information requirements and rule-based assessment processes.

Concern

There is concern that overly prescriptive assessment rules may reduce flexibility in how participant needs are assessed.

Effective assessments rely on a broad understanding of a participant’s circumstances, including:

o Existing records and history.

o Functional capacity over time.

o Professional reports and evidence, and

o The participant’s lived experience.

Limiting or narrowing the information that can be considered may reduce the accuracy and quality of assessments, particularly for participants with complex, fluctuating or lifelong disabilities.

Access to existing agency records can also improve assessment efficiency, reduce duplication, and lessen the burden placed on participants to repeatedly provide the same information.

Recommendation

It is recommended that the current provisions allowing consideration of information already held by the Agency be retained.

The legislation and rules should ensure assessments:

o Remain flexible and person-centred.

o Allow planners to consider all relevant evidence and participant history.

o Minimise unnecessary reassessments and duplication of information, and

o Support informed and accurate decisions about participant needs.

Assessment processes should continue to prioritise a comprehensive understanding of the individual rather than relying solely on standardised or restricted information requirements.

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Concern Five:

Concern Regarding Section 48 – Reassessment of Participant’s Plan

Proposed change

The proposed amendment would remove the current requirement for reassessment requests to be addressed within a shorter timeframe and instead allow up to 90 days for a decision.

Concern

There is concern that extending reassessment timeframes to 90 days may place participants at risk, particularly where support needs have changed urgently.

Participants may request reassessments because of:

o Changes in health or functional capacity.

o Increased support needs.

o Risks to safety or wellbeing, or

o Breakdowns in current support arrangements.

Long delays in reassessment decisions may result in participants going without necessary supports for extended periods, increasing stress, instability and potential harm.

For participants with complex or high-risk circumstances, timely reassessment processes are critical to maintaining safety and continuity of care.

Recommendation

It is recommended that the current shorter reassessment timeframe be retained, including the existing 21-day period where applicable.

Maintaining timely reassessment processes would:

o Support participant safety and wellbeing.

o Reduce risks associated with delayed supports.

o Improve responsiveness to changing circumstances, and

o Ensure participants can access appropriate supports without unnecessary delay.

Consideration should also be given to introducing priority or urgent reassessment pathways for participants experiencing significant changes in circumstances or increased risk.

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Concern Six:

Concern Regarding Use of an Unvalidated Functional Capacity Assessment Tool

Proposed change

There is concern that the proposed functional capacity assessment tool may be used to guide funding and support decisions before it has been fully validated across the diverse needs of people with disability.

Concern

An assessment tool that is not properly validated will likely fail to accurately identify the support needs of some participants.

This may particularly affect:

o People with episodic or fluctuating disabilities.

o Participants with complex or multiple conditions.

o People whose functional capacity changes over time, and

o First Nations participants and people from diverse cultural backgrounds.

If assessment tools rely too heavily on standardised measures, there is a risk that important aspects of a person’s daily functioning, lived experience and support needs may not be fully recognised.

Inaccurate assessments could result in participants receiving insufficient supports, inappropriate funding levels, or decisions that do not reflect their actual circumstances.

Recommendation

It is recommended that no functional capacity assessment tool be implemented unless it has been independently validated as:

o Accurate across the entire broad range of disabilities and support needs.

o Appropriate for people with episodic, fluctuating and complex disabilities.

o Culturally safe and appropriate for First Nations participants, and

o Capable of supporting fair, consistent and person-centred decision-making.

Assessment tools should complement, not replace, professional evidence, participant history and individualised assessment processes.

6 What changes need to be considered so the NDIS is sustainable?

The current amendments are focused in reducing costs, and in giving more power to the Minister. The power given to the Minister as I indicated earlier will result in inadequate individual funding and deaths. There needs to be a major overhaul of the whole process, rather than these quick fix amendments which will put disabled people at high risk.

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The NDIA itself at many levels is inefficient and on occasions represents a dog chasing its tail. A lot of noise and action but very little substance. From my observations here is a snapshot of some of the inefficiencies I have observed.

o Numerous phone calls to the call centre often result in different responses. i.e., When I was a Support Coordinator, I was assisting one participant with an enquiry that I strongly felt I knew the correct answer to. For each call on this matter, I insisted on having the call logged against the participants NDIS number for security and follow up if needed. I made three calls.

The first two calls gave me what I believed were two incorrect answers. The third call operator gave me a very different and clear answer that I knew was correct from the research I had done earlier. The third operator corrected the errors of the two earlier callers on the participants notes and the matter was resolved. I spent roughly 60 minutes in total on this exercise when it should have been resolved on around 15 minutes. The costs in paying the call centre people by the NDIA and my own costs as support coordinator was triple the cost.

o My son was involved in a major appeal to the ART. He had a strong case and we had provided numerous reports from professionals to support the need for additional supports. We spent three horrific years at the tribunal. Numerous costs for reports were sought directly with the NDIS who paid directly for them. Some costing over $5,000.00. The NDIS employed five different high-cost lawyers during this three-year period. Costs to the NDIS I estimate for this one case would have been $100,000.00 plus. My son was also supported by Legal Aide. Yet another high cost incurred by Government, perhaps $50,000.00 plus.

Half an hour before his hearing was due, the NDIS folded and acknowledged the supports we had requested were reasonable and necessary for him. This issue could have been resolved three years earlier without the extremely high-cost and unnecessary pressure on him, our family and myself. The $150,000.00 cost for lawyers mentioned earlier, plus wages and time spent by NDIS bureaucrats could have been far better utilised by the NDIS.

o Whilst the NDIS was being formed I was directly involved in individual planning for my son and many others. As an educator, this for me was a task I took on automatically. The pre-plans I assisted people to create, were presented to the NDIS planners at each participants first meeting. The planners focus however, was not looking at what people actually needed. Their first act was to turn to the last page to see what the total costs were going to be. This is not planning.

Following are recommendations on how the NDIS could not only reduce costs but provide more streamlined and useful services for all participants. Addressing these will go a long way towards the NDIS’s sustainability now and into its future

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7. Recommendations to strengthen the NDIS and reduce its cost The biggest savings for the NDIS will come from reducing waste, duplication, crisis spending, and poor outcomes, rather than reducing essential disability supports.

I request the following be considered when discussing the current bill to strengthen it and its purpose. These recommendations will address and reduce costs, and improve the sustainability of the NDIS, without impacting on participant safety, independence or access to necessary supports.

Key Recommendations:

1. Reduce fraud, waste and over-servicing within the Scheme.

2. Simplify administrative and planning processes to reduce unnecessary costs and delays.

3. Improve coordination between the NDIS and mainstream services such as health, housing and mental health systems.

4. Invest earlier in supports that prevent crises and reduce long-term costs.

5. Strengthen workforce capability, training and workforce retention.

6. Increase participant independence through capacity-building and skill development supports.

7. Prioritise early intervention and preventative supports.

8. Reduce provider price inflation through stronger pricing oversight and transparency.

9. Improve pathways that support participant independence and community participation.

10. Strengthen mainstream service integration to reduce duplication and service gaps.

11. Improve decision-making and internal review processes to reduce tribunal and legal costs.

12. Support housing reform and accessible housing solutions to reduce crisis-driven supports.

13. Ensure funding decisions are guided by consistent evidence-based practices and individual participant needs. For a breakdown of these recommendations refer to Appendice One. Page 15

Legislative Recommendation

It is recommended that the NDIS legislation be strengthened to: o Prioritise early intervention, prevention and participant independence. o Improve transparency, accountability and system efficiency. o Reduce fraud, waste and unnecessary administrative costs. o Support evidence-based and person-centred decision-making, and o Improve coordination between disability, health, housing and community systems. These reforms would support a more sustainable NDIS while maintaining participant safety, dignity and long-term wellbeing.

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Appendices:

Appendice One:

How to reduce the costs of the NDIS without harming participants The biggest savings usually come from reducing waste, duplication, crisis spending, and poor outcomes rather than reducing essential disability supports.

1. Crack down on fraud and over-servicing This is one of the most politically popular savings measures. Examples include: o Fake invoices o Providers billing for undelivered supports o Excessive support hours without evidence o Duplicate claiming o Exploitation of self-managed participants Savings strategies: o Better auditing systems o Data analytics to detect abnormal claiming patterns o Stronger provider registration standards o Faster enforcement action The government has already increased anti-fraud activity in recent years.

2. Simplify administration Administrative complexity itself is extremely expensive. Potential savings: o Shorter planning processes o Fewer reassessments for stable disabilities o Better IT systems o Less duplication between planners, coordinators, and assessors o Standardised evidence requirements Many participants are asked to repeatedly submit the same evidence, creating costs for: o Participants o Allied health professionals o NDIA staff o Review tribunals

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Reducing bureaucracy can save billions over time.

3. Better mainstream service integration A major NDIS cost issue is “cost-shifting” from other systems. Sometimes systems like: o Health o Mental health o Education o Housing o Justice shift responsibilities onto the NDIS. Savings strategies include: o Stronger boundary enforcement o Joint funding agreements o Requiring states to maintain disability services o Rebuilding mainstream supports outside the NDIS This is a major focus of the recent disability reforms and review discussions.

4. Invest in workforce capability Poorly trained support workers can accidentally increase costs through: o Injuries o Restrictive practices o Behavioural escalation o Failed placements o Participant dependency Savings can come from: o Better training o Improved supervision o Specialist behavioural capability o Lower workforce turnover Stable skilled workers reduce crises and improve participant independence.

5. Increase participant independence Long-term costs reduce when participants gain: o Employment o Transport independence

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o Communication skills o Daily living capacity o Community participation Supports that build independence can reduce future funded hours. Examples: o Assistive technology o Employment pathways o Skill-building supports o Accessible housing The key distinction is: o “Maintenance-only” supports often keep costs stable o Capacity-building supports can reduce future costs

7. Earlier intervention and prevention One of the most effective cost-saving strategies is preventing support needs from escalating. Examples: o Funding early therapy and assistive technology before people deteriorate. o Faster home modifications to prevent injuries and hospitalisations. o Preventing participant burnout, family breakdown, homelessness, or institutionalisation. A relatively small investment early can avoid: o Hospital admissions o Mental health crises

o Expensive Supported Independent Living (SIL)

o Emergency accommodation o Justice system involvement This is especially important for children and young adults.

8. Reduce provider price inflation The NDIS has created some distorted pricing in parts of the market. Potential strategies: o Benchmark prices against mainstream health and aged care sectors. o Reduce excessive hourly margins in some therapy and support coordination markets. o Use competitive tendering for high-cost services. o Encourage regional shared services and cooperative models.

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The challenge is avoiding workforce collapse while reducing inflated pricing.

9. Reduce tribunal and review costs Large amounts are spent on: o Appeals o External legal costs o Repeated reassessments o Adversarial decision-making Savings could come from: o Clearer legislation o More transparent decision-making o Earlier dispute resolution o Consistent planning frameworks Participants often pursue reviews because original decisions are unclear or inconsistent.

10. Housing reform Disability housing and Supported Independent L’iving (SIL) can become extremely expensive when people enter them unnecessarily or remain there too long. Potential savings: o More accessible mainstream housing o Better in-home supports o Transitional housing models o Shared support arrangements where appropriate o Preventing hospital discharge delays A small number of participants account for a very large share of total scheme spending, often connected to complex housing and support needs.

11. Use evidence-based supports more consistently Some supports have stronger evidence of effectiveness than others. Savings strategies: o Funding interventions with demonstrated outcomes o Reducing ineffective or duplicated therapies o Monitoring measurable participant outcomes o Discontinuing supports that produce no functional benefit. This is controversial because disability outcomes are not always easily measurable.

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11. Risks of aggressive cost-cutting The biggest policy risk is that blunt cuts can actually increase costs elsewhere. For example: o Cutting therapy may increase future support needs. o Reducing respite can cause family breakdown. o Underfunding behaviour support can increase hospital or justice involvement. o Delaying equipment can increase injury rates. Short-term savings can create larger long-term liabilities.

12. The most effective overall strategy Most experts argue the largest sustainable savings come from:

a) Reducing fraud and waste b) Simplifying administration c) Improving mainstream services d) Investing earlier to avoid crises e) Building participant independence Rather than simply reducing participant budgets across the board.

Appendice Two:

Statements from concerned NDIS participants and their families Following are statements from NDIS participants and their families concerned about these legislation amendments.

NDIS Participant One:

To whom it may concern,

I have been part of the NDIS since its pilot program. My family would have been split and my daughter placed in care if it wasn’t for the NDIS assisting with my personal care needs and given me a safety net because of family violence.

The NDIS has enabled me to maintain social connections and ensure that my daughter and I are safe. If it wasn’t for the NDIS as I stated earlier, I would not and could not have maintained social connectedness personal and professional connections. I could not even conceive where I would be in the shape of my family without the NDIS. Thank you for listening.

Sincerely. A mother who is afraid of losing connections to my family and the wider community if these changes proceed.

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NDIS Participant Two:

We are the parents of two sons who are participants in the NDIS.

We were very fortunate to be in the second region when NDIS was introduced.

Both our sons are plan managed.

My younger son has been a participant for nine years and my older son for five years.

The last seven years has been a very positive experience for us as ageing parents as we have seen our son been given the opportunity to be supported in his goals, to live independently of us in his own home nearby.

He has been supported 7 days a week for 24 hours with his personal care, community engagement, inclusion in experiences which have contributed to his health and wellbeing. He has achieved many goals and accomplishments and continues at the present to show growth in his capabilities and abilities which give him confidence to learn more skills in daily life.

The older son, only having recent access to the NDIS has also shown greater independence and abilities which have enabled him to participate in volunteer work and commute independently without support. With focused, targeted support from allied health and assistance from support workers he has transitioned successfully into independent living.

With service coordinator support we, as elderly parents have been supported in making choices and good decisions about our sons’ welfare.

They continue to need support to achieve long term goals and are progressing with their short-term goals. To continue this improvement, they are dependent on their current plans to be implemented without disruption.

The NDIS has been our assurance for us that our sons will be able to live a rich fulfilled life when we, as ageing parents may not have the capacity at all to support them.

The NDIS has given us, as our sons’ guardians, choices to make the best decisions in our sons’ daily life with support worker’s (assistance with daily life), improved daily living, capacity building and assistance with social and community participation.

With this ability to make our choices we have enabled them to get the best supports and opportunities as young adult men growing into their middle age years.

The system at present fulfils our sons’ needs.

Changes to this system should be made with consideration to the benefits in maintaining the current successes.

NDIS Participant Three:

To the Senate Community Affairs Legislation Committee,

I am the parent of an adult who is currently in receipt of NDIS Funding and whom is currently fearful of the proposed changes.

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Submission 742

I consider ourselves privileged for the supports we have been able to procure for our adult the past twelve years. However, at this present time with the many proposed changes I am feeling overwhelmed as to what is ahead both for my adult and as a family.

I am aware of the proposed changes relating to eligibility and concerned the new assessment tool which is to be undertaken to assess functional capacity will not encompass my persons true capacity.

I am fearful that with the current proposed changes that my adult is about to lose choice and control and support in the life they choose, this includes the capping of support dollars, reduction of social and community participation, the input of a Support Coordinator and whom adult wishes to have deliver stated supports.

In said adults life they are faced with complex medical challenges which impacts support being delivered at times for extended periods, the current proposed bill does not allow for funding rollover which has the potential to significantly challenge my adults timeframe to achieve substantial and ongoing goals.

I agree that more is required to be done relating to fraud and the charges of external services however I am against the fear mongering when parents will if found to make errors be held accountable may I suggest very clear and concise framing as most parents seek to do the correct thing.

Should reduced funding for social and community participation proceed I know that for my adult this will present our family with behavioural issues and further isolation. My adult will not feel an equal which is vital for being seen and heard and formulating a friendship circle. Further funding cuts will also impact her ability to undertake tasks that adult desperately requires to further independence and wellbeing.

Committee, I am an ageing parent who should be preparing for retirement with my husband who soon will also retire from The Australian Defence Force. Both are exhausted and share broken bodies supporting our adult and caring for two sets of aged and ill parents and neither of us know how we will manage without appropriate support moving forward. Under current framework we are able to flexibly support our family which is less of a burden to our healthcare systems and services.

Sincerely

NDIS Participant Four:

Our son is 26 years old and became an NDIS participant in 2017. His care model supported by our State since 2012 consisted of 2:1 nurse and support worker on each shift. This was because his needs are so high no provider would care for him without a nurse present to deal with acquired brain injury, psychosocial dysfunction and severe refractory life threatening seizures. Last year alone he had an ambulance attend him in his high Physical Support Specialised Disability Home or in the community setting on 98 occasions. In addition, he had 112 seizures of more than 3 minutes needing administration of midazolam by staff and another 4000 plus small seizures of less than 3 minutes that while still requiring care by his staff resolved without the need for medication administration.

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Submission 742

Under the State system our son was well supported. When he transitioned to the NDIS we had to battle them about who would pay for his nursing care. We spent 2.5 years in review and appeal and won every support requested as the evidence was and remains so strong. We thought that given his supports had been determined through due processes of a Housing Assessment, review and AAT appeal processes, that he would be provided with the lifelong support he needed.

Between his seizures he is not in a wheelchair and participates fully in his community. His funding was appropriate to his need from 2019 when the AAT consent order was signed until February 2026 when the agency suddenly took away $300,000 approximately of previously determined reasonable and necessary support. We are going back to the tribunal yet again, to again fight what is an unfair system. We know we will win but the question is can he hang on that long while legal processes are drawn out.

We will lose another quarter of the funding if the 50% reduction is applied with a blunt decision by the Minister to cut social and community participation by 50%. In other words, the ways the plans are put together will have devastating life-threatening impact on a person like my son, the very person that the Minister says should be supported by the scheme.

A civilisation is judged by the way they treat their most vulnerable and our son is one of these people. I thought Labor was the party of the battler. I was wrong. I understand the costs of the scheme need to be wound in. But honestly the legislation should not be targeting people like our son who is the participant of the system after all… The legislation should be auditing providers who are ripping off the system, organized crime and lower need in the system who don’t rely on supports to survive!

We would ask all politicians, be they in the Senate or the House to throw out this bill and require the NDIS to ensure that all 24/7 care models currently in place regardless of how they are named in the plans be preserved for the safety of those living in 24/7 Specialized Disability Accommodation like our son.

I am begging for the life of a funny, social, resilient young man who deserves better from his government.

Regards

NDIS Participant Five:

From a parent of an adult participant

How has it come to this? That the burden of fixing the NDIS rests, once again, on the shoulders of disabled people and their families. Frankly, you get paid to work this out, not me.

What do you expect will happen when you cast people off the NDIS, by pretending some people’s disabilities just don’t exist? Or what do you expect will happen when disabled people are not allowed to leave the house, go shopping, sit in a café with friends or just live a life? What is the NDIS for if not to give disabled people and their families the ability to live

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Submission 742

a regular life without fear of being taken advantage of and manipulated? Why would the Government expect a different outcome for roboNDIS than what happened with roboDEBT? Have they learnt nothing? Why isn’t the bigger picture being discussed around rights of people with disabilities, the type of society Australian’s want to live in and the total economic impact of the NDIS, not just the narrow view of the “budget”?

I want to live in a world where the most disadvantaged and vulnerable in our society are cared for with compassion, empathy and dignity. Not made to feel guilty, a burden or ostracised. I want a society where the disabled community are just part of the regular, everyday community, out and about. Why is it that abled bodied people feel so secure in judging disabled people just for existing in society? Do we look askance at the elderly when they are in the community? Maybe it’s because we can all imagine one day being old but a lifelong disability won’t happen to us? Well, disabilities don’t discriminate, they can and do happen to literally anyone.

So, what can we do to ensure that the NDIS provides services for those who need it? We need to maintain the following core principles that the NDIS was originally set up:

• Ensuring choice and control rests in the hands of disabled people and their informal supports.

• Ensuring those supports are reasonable and necessary That’s it really. Why don’t we do that? Why isn’t the NDIS set up to appropriately to provide this? What are the real issues? When politicians talk about an NDIS overspend, does it consider the vibrant and expanded industry that has sprung up around the NDIS? What about the ability for disabled people to enter the workforce (not sheltered work(sweat)shops) and contribute income tax? What about all those independent support workers and new and improved providers who are earning and contributing, whilst also providing individualised support in all types of settings, whether 1:1, or groups; a breath of fresh air instead of the stale old, institutionalised model, where disabled people are forced into “bowling every Wednesday” whether they like it or not? That is choice and control.

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