Daughter with multiple disabilities and grandson who is autistic require complex supports (Family or carer experience)

Submission 2617

Submission to the Senate Standing Committee on Community Affairs

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au Date: 31 May 2026

I strongly oppose the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 in its current form. Attached is a formal submission covering my objections more fully. I believe this Bill will have serious consequences for people with complex, intersecting and fluctuating disabilities, and for the families who support them.

I am a 68-year-old working carer with a 79-year-old partner, supporting my adult daughter, who has multiple disabilities including vision impairment, arthritis and chronic autoimmune conditions, and my grandson who is autistic. They live independently in a regional area with extremely limited transport access. My circumstances are not unique. Many NDIS participants rely on intergenerational care arrangements, where older parents provide substantial support to adult children with disabilities while also supporting grandchildren, yet the Bill fails to account for the finite capacity of aging carers.

In short, the proposed changes will not reduce costs — they will:  shift them onto older carers, vulnerable children, and other parts of government, ultimately increasing long-term public expenditure.  reduce the supports that keep my daughter safe and independent, while increasing reliance on me and my 79-year-old partner at a stage of life when our ability to provide care is inevitably declining, and place our family at immediate risk.

A foreseeable outcome will be higher long-term costs to government, due to carer burnout, workforce withdrawal, reduced economic participation, and increased downstream service demand.

This Bill risks breaching both the NDIS Act 2013 and Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities by reducing access to essential supports, ignoring the reality of complex and fluctuating disability, and shifting unsustainable care responsibilities onto ageing informal carers.

For my daughter, this will result in reduced supports, increased instability, and loss of independence. For my autistic grandson, it will mean disruption to essential support relationships, increased distress, and poorer developmental outcomes.

For me and my 79-year-old partner, it will mean increased physical, emotional, and financial burden at a time when our capacity is declining due to age.

Without adequate support:  Informal carers will be forced out of the workforce  participant wellbeing will decline, and  costs will shift onto other parts of the system, increasing long-term public expenditure.

Key concerns include:  Narrowing of eligibility and assessment to single impairments (Schedule 1 Part 3; Parts 8–9), which fails to capture cumulative and fluctuating disability impacts  Introduction of “treatment exhaustion” requirements (Schedule 1 Part 8), inappropriate for chronic autoimmune conditions  Expanded Ministerial powers to reduce funding without review (Schedule 1 Part 4; Schedule 3)  Removal of review rights and reassessment protections (Schedule 1 Parts 1, 2, 5 and 8)  Risk of support reductions before replacement systems are operational

Submission 2617

I urge the Committee to amend the Bill to:  restore whole-of-person assessment  protect review and reassessment rights  limit Ministerial powers to reduce supports  remove treatment exhaustion requirements  ensure no reduction in supports before replacement systems are fully operational  explicitly recognise and plan for the reality of aging carers

Failure to address these issues will lead to poorer outcomes for participants, increased pressure on families, and higher long-term costs to government.

Yours sincerely

Submission 2617

Submission from Aileen Clarke (Please withhold my name)

This submission outlines the significant negative impacts of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 on my daughter, an NDIS participant with complex, intersecting and fluctuating disabilities, and my autistic grandson, also an NDFIS participant. Key concerns include:  Narrowing of eligibility and assessment to single impairments (Schedule 1 Part 3; Parts 8–9), which fails to capture cumulative and fluctuating disability impacts  Introduction of “treatment exhaustion” requirements (Schedule 1 Part 8), inappropriate for chronic autoimmune conditions  Expanded Ministerial powers to reduce funding without review (Schedule 1 Part 4; Schedule 3)  Removal of review rights and reassessment protections (Schedule 1 Parts 1, 2, 5 and 8)  Risk of support reductions before replacement systems are operational

These changes will reduce my daughter’s independence, destabilise essential supports for my autistic grandson, and significantly increase the burden on me as a 68-year-old working carer. The likely outcome will be higher long-term costs to government, due to carer burnout, workforce withdrawal, reduced economic participation, and increased downstream service demand.

1. Background I am a 68-year-old part-time worker and informal carer, with a 79-year-old partner. I provide support to my daughter and grandson 2–3 days per week, travelling from inner Melbourne to a regional area on Melbourne’s urban fringe. My daughter has multiple intersectional disabilities, including:  Legal blindness (she cannot drive)  Autoimmune arthritis causing chronic pain and fluctuating mobility and dexterity  Additional autoimmune conditions impacting fatigue and functioning She lives independently in a location with extremely limited public transport:  One bus per hour  One-hour journey to the nearest train station  A 25-minute walk to the bus stop, which she cannot physically manage She is also the primary carer for her autistic son, who requires stable, predictable relationships, and who will also be affected directly and indirectly by this Bill. Of course, my caring role extends to him as well to ensure his needs are met, e.g. transport, social, recreational and educational activities.

2. Functional Capacity and Single Impairment Model (Schedule 1 Part 3; Schedule 1 Parts 8–9) The Bill shifts from a whole-of-person approach to assessing disability based on a single “eligible impairment”. Impact on my daughter This fails to recognise how her conditions interact:  Vision impairment  Chronic pain  Fatigue  Reduced dexterity Together, these significantly limit her daily functioning. A single impairment assessment risks systematically underestimating her support needs, particularly on “good days”. Impact on my grandson

Reduced supports to his mother will:  Compromise his safety  Reduce consistency in care  Negatively affect emotional regulation and development

3. Requirement to Exhaust Treatment Options (Schedule 1 Part 8)

Submission 2617

The Bill introduces a requirement that a person must exhaust “reasonable and available treatment options”. Impact on my daughter This is inappropriate for permanent vision impairment and chronic autoimmune conditions which:  Are lifelong and incurable  Often involve treatments with serious side effects  Require ongoing management, not resolution It ignores:  Financial cost of treatment  Availability of specialists (especially in regional areas)  Medical reality of fluctuating conditions Impact on my grandson Any delay or denial of support for his mother directly reduces her ability to:  Care for him safely  Maintain consistency in routines  Meet his developmental needs

4. Ministerial Powers to Reduce Funding (Schedule 1 Part 4; Schedule 3) The Bill allows the Minister to reduce funding across support categories via legislative instrument, without merits review. Impact on my daughter Any reduction to supports will:  Reduce her independence  Limit access to essential daily living assistance  Increase risk of physical harm and exhaustion Impact on my grandson Reduced funding will:  Disrupt care stability  Increase stress and behavioural challenges  Lead to higher long-term support needs

5. Removal of Review and Reassessment Rights (Schedule 1 Parts 1, 2, 5 and 8) The Bill:  Restricts reassessment requests  Removes review rights for automatic plan renewals  Limits the ability to challenge decisions Impact on my daughter Her condition fluctuates significantly. Without flexible reassessment:  She may be locked into inadequate supports  Periods of severe disability will not be appropriately funded Impact on me (carer) This will transfer responsibility onto me, increasing:  Physical strain  Emotional stress  Financial burden

6. Supports Reduced Before Replacement Systems Are Ready (Schedule 1 Part 4) Planned reductions to support categories risk being implemented before foundational supports exist. Impact on my daughter  Increased isolation  Reduced ability to live independently

Submission 2617

 Loss of community participation Impact on my grandson  Loss of structured supports  Reduced developmental opportunities  Increased reliance on informal and crisis supports

7. Workforce Stability and Registration Requirements The introduction of fee-based registration for support workers risks driving independent workers out of the sector. Impact on my grandson As an autistic child, he requires:  Stable relationships  Consistent support workers Frequent turnover (common in agency models) causes:  Distress  Regression  Increased behavioural challenges Economic impact Loss of independent workers:  Reduces employment opportunities  Increases reliance on higher-cost agencies  Increases overall system costs

8. Transport Inequities Current transport funding arrangements are inequitable.

Issues

 Participant transport funding is too low  Provider travel charges (e.g. therapists) are too high Impact on my daughter  She cannot drive  She cannot access public transport due to distance and disability This creates complete reliance on supports and informal care.

Recommendation

 Increase participant transport funding  Allow support workers to charge travel only once they begin providing support (e.g. transporting participants), not for commuting

9. Carer and Economic Impact These proposed changes shift responsibility away from the NDIS onto informal carers. Impact on me As a 68-year-old working carer:  I face increased financial pressure from travel and reduced work capacity  I experience increasing ongoing physical strain and emotional distress  I risk needing to reduce or leave employment

10. Broader economic impact across Australia  Reduced workforce participation  Reduced tax contributions  Increased reliance on income support  Higher long-term government expenditure

11. Intergenerational Care and Aging Carer Impacts My circumstances are not unique. Many NDIS participants rely on intergenerational care arrangements, where older parents provide substantial support to adult children with disabilities while also supporting grandchildren.

Submission 2617

I am 68 years old and my partner is 79 years old. While we are currently in relatively good health, the inevitable aging process will reduce our capacity to provide care over time. Impact on aging carers The proposed changes will increase reliance on informal care at precisely the point where that care is becoming less sustainable. Physical and health risks  Ongoing long-distance travel several times per week  Increasing physical demands of caregiving  Higher risk of injury, illness, and exhaustion Emotional and psychological burden  Ongoing stress about declining capacity  Anxiety about future care arrangements  Concern for the long-term wellbeing of both my daughter and grandson Financial impact  Potential need to reduce or cease work earlier than planned  Increased out-of-pocket expenses  Reduced retirement security

Compounding impact on my daughter and grandson As our capacity diminishes:  My daughter will face increasing unmet support needs  Her ability to safely parent will be compromised  My grandson will experience greater instability, including disrupted routines Without adequate support, this creates a real risk of:  Crisis intervention  Increased reliance on statutory systems  Higher long-term public expenditure

Policy concern The Bill fails to recognise the finite nature of informal care, particularly where:  Carers are older  Care spans multiple generations  Disabilities are complex and fluctuating By enabling funding reductions (Schedule 1 Part 4; Schedule 3) and limiting review rights (Schedule 1 Parts 1, 2, 5 and 8), the Bill risks embedding unsustainable dependence on aging carers.

12. Domestic legal framework and international human rights obligations The proposed amendments risk placing Australia in breach of both its domestic legal framework and international human rights obligations. By narrowing assessment to a single impairment and removing whole of-person consideration (Schedule 1 Part 3; Parts 8–9), introducing treatment exhaustion requirements (Schedule 1 Part 8), and enabling funding reductions without adequate safeguards (Schedule 1 Part 4; Schedule 3), the Bill undermines the core objects and principles of the NDIS Act 2013 (ss 3(1)(c), 3(1)(g), 4(5), 4(11) and 4(12)), which require supports to promote independence, respond to individual needs, and recognise the role and limits of carers. These changes are also inconsistent with Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities, including Articles 19, 28 and 7, by reducing access to supports necessary for independent living, dignity, and the protection of children with disabilities, while increasing reliance on ageing informal carers without adequate support.

13. Recommendations The Bill should:  Include a carer sustainability test in planning decisions  Ensure aging carers are not expected to compensate for reduced supports  Require planning to consider future decline in informal care capacity

Conclusion

The Bill, in its current form, will:

Submission 2617

 Reduce supports for people with complex and fluctuating disabilities  Increase instability for vulnerable families  Shift unsustainable responsibility onto informal carers  Fail to account for aging carers and intergenerational care realities  Result in poorer outcomes and higher long-term costs to government  Place Australia at risk of breaching its domestic legal framework and international human rights obligations  I urge the Committee to:  Restore whole-of-person assessment  Remove treatment exhaustion requirements  Limit Ministerial discretion  Preserve review rights  Ensure no reduction in supports before replacement systems are operational  Recognise and plan for the real limits of informal and aging carers

Failure to address these issues will lead to poorer outcomes for participants, increased pressure on families, and higher long-term costs to government, and risks breaching domestic and international legislation and conventions to which Australia is a signatory.