Submission 766
© Connective Tissue Disorders Network Australia 2026 Registered Office 34-36 Byrnes St Botany, NSW 2019
ABN: 77674125047
W: www.ctdna.org.au E: admin@ctdna.org.au
Submission 766
Attention: Committee Secretary, Senate Standing Committee on Community Affairs
Submitted by email: community.affairs.sen@aph.gov.au
Date: 28/05/2026
Connective Tissue Disorders Network Australia (CTDNA) welcomes the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
We are the peak body in Australia representing individuals impacted by heritable connective tissue disorders (HCTD). We are a fully volunteer run organisation which includes people with disabilities, NDIS participants and carers of NDIS participants.
Heritable connective tissue disorders (HCTDs) are a group of genetic, heritable and often rare conditions affecting the body’s connective tissues. Connective tissue provides the support and structures and organs in the body. HCTDs are multisystemic conditions, which means the impacts can be many across multiple body systems, and the presentation can vary between individuals, and even for an individual across their lifespan.
Due to the multisystem nature of HCTDs all organ systems can be impacted, this includes the skin, bones, joints, eyes, heart, and blood vessels.
CTDNA supports measures that strengthen the integrity and long-term sustainability of the NDIS. However, this Bill represents a fundamental shift away from the NDIS’ rights‑based, individualised design toward a more standardised and capped service model. This model can only work if adjacent systems are strengthened to absorb displaced needs and costs.
CTDNA would like to outline the harm this Amendment Bill will cause if it passes Parliament in its current form. This Bill is presently too far-reaching and requires further scrutiny and amendment before it proceeds.
CTDNA Does Not Support the Passing of This Bill as Drafted.
The proposed reforms will disproportionately disadvantage people with complex and rare disease disability whose needs are often multi-system, progressive and highly individualised.
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CTDNA is particularly concerned the Bill will result in:
● Reduced parliamentary oversight of key funding and policy decisions.
● Weaker procedural fairness and review safeguards for participants.
● Eligibility criteria based on standardised functional assessments that do not reflect complexity or real‑world functioning.
● Exclusion of comorbid and non-qualifying impairments from funding consideration.
● Reliance on foundational supports that are not yet fully established.
● Reduced flexibility in planning, reassessment and responsiveness to change.
● Evidentiary requirements that are not fit-for-purpose in a rare disease disability context, thereby embedding existing systemic inequity.
These reforms risk underestimating need, compromising participant safety and wellbeing, and shifting cost to already overwhelmed families.
Parliamentary Scrutiny and Transparency
The two-week consultation period for the Amendment Bill is insufficient to allow for appropriate consultation, considering accessibility and communication needs. The Australian Government Guide to Policy Impact Analysis states consultation should occur for a minimum of 30 days where possible.
Many people impacted by HCTD live with reduced capacity due to the disabling nature of their conditions. Individuals often have few functional hours each day, or even each or week. The short consultation period therefore limits the ability of individuals impacted by HCTD to make submissions, even though they are stakeholders.
Recommendation: Amend the consultation period to the best-practice minimum of 30 days.
Key decisions left to ministerial instruments, not law
The issue: The Bill allows Ministers to change who gets NDIS support (Schedule 1 Parts 8 and 9) and how much funding people receive (Schedule 1 Part 4; Schedule
- by signing an instrument, without going back to Parliament. The rules that will
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determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not yet been written.
How this affects participants: The decisions that shape the lives of participants, whether they qualify for the NDIS and what supports they can access, could be changed without parliamentary debate or public scrutiny. Participants may not know supports or eligibility rules have changed until their plan is affected.
A reduction in support/s without due consultation and appropriate communication with participants risks negatively impacting participants who rely on continuity of allied health service access to reduce and minimise risk of functional capacity decline, but also of in-home community supports which assist many with activities of daily living and aid social, educational and employment participation. This risks leaving participants in situations where their home environment may become unsafe, and / or increases the risk of social isolation.
Recommendation: Require that all decisions affecting NDIS eligibility and funding levels be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice to affected participants before any changes take effect.
Existing participants face narrower criteria and fewer rights to challenge decisions
The issue: The Bill changes the rules for existing NDIS participants and makes it harder to challenge some decisions about support and funding. It also restricts when you can request a reassessment, removes review rights for automatic plan renewals, and makes funding reductions unreviewable (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and unreviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their support.
How this affects participants: This does not protect participants already on the NDIS, who could be reassessed under stricter rules. If someone’s funding is reduced or their plan renewed automatically, they may have limited or no ability to challenge that decision. This could make it harder for people to get extra support when their circumstances or disability change.
“The NDIS doesn’t seem to understand that Ehlers-Danlos syndrome is a fluctuating and progressive condition as well as being incurable and life-long. My body is just hanging on because I have intensive physiotherapy twice a week, this has allowed me to manage in my home without substantial in-home support for
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years. I’m scared that an automatic reduction with fewer rights to challenge decisions could leave me housebound and ultimately more disabled.”
Community Member
Recommendation: Require a “no harm” safeguard ensuring no current participant loses access to supports unless equivalent supports are in place, with independent review rights before any exit decision and access to unscheduled reassessments preserved.
Unreviewable ministerial power to cut funding across all support categories
The Minister can reduce funding for any support or group of supports by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4). This applies across all budget categories. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5).
How this affects participants: A participant’s community participation, capacity building or assistive technology funding could be cut without warning and without any right to appeal. Participants who save unspent funds across plan periods for high-cost items will lose that ability entirely.
HCTDs affect the body in complex and varied ways which are often poorly understood by planners. Many in our community have required appeals processes to ensure they are allocated appropriate disability supports. Our community are also often planning their support usage over long periods. Without the right for appeal this may leave many in our community poorly or wrong funded.
Recommendation: Require that unspent funds carry over at plan renewal for participants saving for high-cost items and require independent review rights before any funding reduction takes effect.
Requirement to exhaust treatment options before eligibility
The issue: A person with a permanent disability will need to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). There will also be a removal of whole-of-person assessment, replaced by single eligible impairment consideration (Schedule 1 Part 3). The note that previously acknowledged environmental factors and other ineligible impairments could affect support needs will be removed (Schedule 1 Part 3). People who are financially or
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geographically incapable of accessing all “appropriate treatment” could never meet the proposed eligibility criteria (Sch 1, Part 3 cl. 92).
How this affects participants: People with disability will need to prove their impairment cannot be treated before they access the NDIS. Once in the scheme, their supports will only be assessed against a single eligible impairment rather than their whole experience. A person’s individual circumstances will not be considered, including ability to pay for treatment, where they live or whether treatment is actually available to them.
HCTD is multisystemic by nature - connective tissue is part of all structures and organs throughout the body. People with HCTD usually have more than one impairment causing disability but they are difficult to separate out due to the overlapping and multisystemic nature of HCTD. There is also an inequity of access to perceived treatments included as those needing to be ‘exhausted’ which in turn opens up non-evidenced based ‘treatment’ which is costly and not available through public means. This should be restricted to treatment options that may be available via MBS, public hospitals and / or PBS.
“The people making decisions about our care don’t seem to listen to what it actually means to be affected by a condition that affects connective tissue. Our conditions are multisystem disorders. It feels like my body is falling apart and my cognition is impacted due to brainstem and spinal cord compressions that prevent the blood and oxygen getting to my brain because my connective tissue can’t hold my head and neck in place. It feels like because the people making decisions can’t see this, that they can’t comprehend the impacts, that decisions about what will help me are made separately to what I actually need.”
Community Member
Recommendation: Do not proceed with a requirement to exhaust “all appropriate treatment” options. There are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.
Unvalidated functional capacity assessment tool risks misidentifying need
The issue: The Bill shifts assessment from whole-of-person consideration to a single eligible impairment (Schedule 1 Part 3). Read together, with the proposed eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity
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assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment.
In parallel to the Bill, the NDIS has announced the Instrument for Classification and Assessment of Support Needs (I-CAN) will be a needs-assessment tool. I-CAN requires validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point-in-time assessment, and to ensure it is culturally appropriate for First Peoples with disability.
How this affects participants: If the assessment tool does not accurately capture the full extent of a person’s disability, including needs that fluctuate or vary over time, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience.
People with HCTDs frequently experience fluctuating capacity, this is due to the inherent nature of the conditions presenting oftentimes with dynamic, evolving and unpredictable manifestations; shifting organ or body system involvement and impacts that can be dire for different systems over time.
“I see many patients living with heritable connective tissue disorders, particularly hypermobile EDS, and no two presentations are the same. The level and nature of disability can vary significantly, with many requiring long-term, collaborative support to prevent further deterioration. The NDIS must listen to clinicians experienced in complex conditions like hEDS when making assessments, as broad categorisation or algorithm-based approaches risk inappropriate supports, worsening disability outcomes, and misallocation of funding.”
Physiotherapist specialising in hEDS
Recommendation: Do not proceed with I-CAN as the functional capacity assessment tool unless it has been demonstrably validated to identify the needs of all people with disability, including those with episodic or fluctuating disability, and demonstrated to be culturally appropriate for First Peoples with disability.
Supports cut before replacement system is ready
The issue: The government has announced that, from 1 October 2026, funding for social, civic and community participation supports will be cut by 50 per cent and capacity-building daily activities by 10 per cent for all participants, reductions that will be implemented through the ministerial instrument power in Schedule 1 Part 4.
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The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational.
How this affects participants: Supports that help participants connect with their community, build skills and maintain independence may be cut before anything exists to replace them, leaving carers and families with greater responsibilities and no additional support. These supports are often what help people stay visible, connected and safe.
A reduction of capacity-building will have an enormous impact on the HCTD community as many rely on physiotherapy to maintain ordinary day-to-day function. Many already do not receive adequate funding to see them through an entire year.
This will leave many people within the HCTD community at increased risk of severe social isolation, compromised safety due to reduced home care and support services that seek to engage social and community participation, and, for some, an inability to adequately care for themselves independently. These impacts are not theoretical — they affect daily functioning, health, dignity and quality of life for individuals living with complex disability and chronic illness, as well as the families and carers who support them.
Recommendation: Require that no reductions to community participation or capacity-building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will lose NDIS supports.
When the NDIS works it is life changing.
“I had an amazing LAC for a few years. She really listened to what was going on with my EDS and in which ways it was disabling me and advocated for a plan that meant I was the best managed I’d ever been. After that LAC left I have had a rotation on LACs who are disinterested, don’t know anything about me or my disability and my plan has been rolled over at the same rate as all costs of services increase.
There is no cure for EDS but having management has meant I can participate in some work, family and social life again. I live in constant fear of losing my delicately managed attempt at ordinary functioning. “
Community Member
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Conclusion
CTDNA calls on the Senate Community Affairs Legislation Committee (the Committee) to safeguard people living with HCTD and indeed all complex disease disability and their families and carers. CTDNA urges the Committee to ensure that the NDIS Amendment Bill 2026 strengthens the Scheme without undermining the rights, wellbeing and independence of people living with heritable connective tissue disorders and other disabilities. Reform must be grounded in meaningful consultation and co-design with people with disability and Disability Representative Organisations, informed by lived experience, and supported by clear guidance, appropriate safeguards and comprehensive NDIA.