Submission 738
Kindship submission — NDIS Future Generations Bill 2026
Kindship Group
Submission to the Senate
Inquiry into the National Disability Insurance Scheme Amendment (Securing the
NDIS for Future Generations) Bill 2026
Submitted by Hayley Thiele
Chief Executive Officer, Kindship Group
On behalf of 768 Australian families
Date 31 May 2026
Contact
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
About this submission
Kindship is a national community of families raising children and young people with disability, developmental delay and neurodivergence. We support more than 6,200 parents and carers through peer connection, education and plan management. The families in our community are the people this Bill is talking about when it uses the words “informal supports” and “parental responsibility.”
In May 2026, when the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 was referred to the Committee, we asked our community a simple question: what do these proposed reforms mean for your family?
Behind the 768 responses are families from every state and territory, from city suburbs, regional towns and remote communities, with 39% living outside a capital city. They are parenting children from newborns to young adults, most of them with autism, ADHD, intellectual disability or developmental delay with many carrying more than one of these at once. They took time, time they did not have, in the middle of caring for their children, to tell the Senate what these proposed reforms will do to their lives.
This submission is their voice. It is not a legal analysis. It is not a clause-by-clause critique. That legal and technical analysis has been done by others, and done well. We commend it to the Committee at the end of this submission. What we are bringing is something only families can bring: the lived reality of what these reforms will mean for the children and young people it is supposed to protect.
A note on scope
Our community is families raising children and young people with disability, developmental delay and neurodivergence. We are not the voice of every NDIS participant. This survey was designed for and distributed to our community via email and our social media following of nearly 40,000 people. It does not capture the voice of adults with disability, who are speaking to this Bill in their own right and whose perspective the Committee should also seek. What we offer here is the voice of parents and carers raising the next generation of NDIS participants.
We acknowledge that the survey instrument was not a perfect tool. It tested six of the highest-impact proposed reforms in the Bill, not every change. Concern levels for proposed reforms we did not test may be higher or lower. The 768 families who responded are not a statistically representative sample of the NDIS population. They are a community who chose to take the survey, shared their views plainly, and asked us to bring those views to Parliament.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
What 768 families want you to know
Across six proposed reforms surveyed, between 84.6% and 97.2% of respondents said they were either concerned about, or strongly disagreed with, the proposed change.
Zero of 768 respondents strongly supported any of the six proposed reforms tested.
The single highest concern was the Minister’s new power to reduce funding for groups of supports in existing plans, with no right of review (proposed section 34A). On that provision, 88.1% of respondents strongly disagreed and a further 9.1% were concerned.
In Senate debate on the day the Bill was introduced, Senators described the combined effect as removing $185 billion from the scheme over a decade, framed as the largest cut to a government program in Commonwealth history.
Concern by provision
Provision tested Concerned Strongly Combineddisagree
Minister can reduce funding for groups of 9.1% 88.1% 97.2%supports in existing plans, with no right of review (s 34A)
Applicants must have tried “all appropriate 21.5% 74.1% 95.6%treatment” in Australia (s 25A, s 24)
Parental responsibility presumption and 20.5% 73.5% 94.0%informal supports default (s 34(1G)–(1K))
Hierarchy of evidence that prioritises 18.9% 74.7% 93.6%peer-reviewed research (s 34(1E)–(1F))
Reassessment decision window extended from 23.1% 66.7% 89.8%21 days to 90 days, deemed decision removed (s 48A)
Automatic 12-month plan renewal with no 23.8% 60.9% 84.6%statement of participant supports and no right of review (s 50A)
The lowest combined concern across any of the six proposed reforms tested was 84.6% In the qualitative comments, families wrote in tones filled with alarm, exhaustion, anger and fear.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
Who we heard from
768 families completed the survey between 24 and 28 May 2026, from every state and territory and across a range of plan funding sizes and management types.
Where they live
NSW 37.2%, Victoria 24.2%, Queensland 13.9%, Western Australia 11.1%, South Australia 8.9%, Tasmania 2.2%, ACT 2%, Northern Territory 0.3%. 61% live in metropolitan areas, 35% live in regional Australia and just under 4% live in remote areas.
The children and young people they care for
Ages ranged from infants under one to adult children in their forties whose parents still care for them. 18% were 6 years old or under. 25% were ages 6 - 9 years old, 22% were 10 to 13 years old, 15% were 14 to 17 years old and 15% were 18 years old or older.
Most children had multiple co-occurring diagnoses. The most commonly reported were autism (62.9%), ADHD (46.9%), intellectual disability (33.6%), physical disability (28.5%), developmental delay (26.7%), genetic syndrome or chromosomal difference (23.8%) and psychosocial disability (13.2%). Smaller numbers reported chronic health conditions, vision impairment, hearing loss and other rare disabilities.
How their plans are managed
Half (50.1%) are plan-managed, 38% are self-managed, 9% use a combination of two management types and 1% are agency-managed. The self-managed proportion is higher than the national average for the NDIS.
Plan size
About a third (32.7%) have plans valued between $10,000 and $30,000. 17.6% have a plan value between $30,000 and $50,000, and 19% between $50,000 and $100,000. The remaining quarter have plans above $100,000, reflecting children with higher and more complex support needs. 6% of respondents have plans over $300,000.
Family complexity
65% of respondents have one child on the NDIS. 26% have two. 6% have three. Many parents also have other children at home, are managing their own health conditions and disabilities, are sole parents, or are carers for aging parents.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
What the data showed
Across more than 3,000 written responses, five themes emerged clearly and consistently. Each is grounded in the words of the families themselves, presented in order of their prominence in the data.
- “My child’s disability is permanent. Asking us to prove otherwise is cruel.”
95.6% of respondents were concerned about or strongly disagreed with the new requirement that applicants must have tried “all appropriate treatment” in Australia before their impairment can be considered permanent under proposed section 25A. It was the second-highest level of concern across all six proposed reforms tested.
157 families used words like “no cure”, “lifelong”, “permanent” or “incurable” in their responses. For many of them, the diagnosis itself answers the question the Bill is asking them to prove again. There is no treatment that makes Down Syndrome, Cerebral Palsy, Autism or genetic conditions less permanent. The Bill asks these families to prove something their child’s diagnosis already does.
“My child’s autism is a permanent disability. She will never outgrow it.”
— Mother, NSW Regional, child aged 8
“My child’s disability is permanent. As she has trisomy 21. This isn’t something that can be changed. We can only manage.”
— Mother, NSW Regional, child aged 1
“It’s in scientific journals as well as the DSM that Autism is permanent. It’s cruel and dismissive to tell them they need to prove their permanent disability is actually permanent.”
— Parent, SA Metro, children aged 14 and 17
Beneath the rejection of the principle sits a practical objection that families raised again and again. The Bill’s drafting at section 25A(2) says that treatment is appropriate “regardless of whether the person’s individual circumstances restrict the person from accessing the treatment.” 91 comments raised geographic and financial access barriers explicitly.
“The waitlist for a public paediatrician in WA is 5 years. For a private paediatrician it is about 2–3 years. Many have closed their books. Should a child be waiting 2–5 years just to get a paediatrician to say they cannot function and have exhausted all treatment options? This goes against much science-based evidence of early intervention.”
— Parent, WA Metro, child aged 8
“As we live in a rural area, just getting access to therapy is a constant and costly battle. By putting these stipulations on families, this will mean that
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
many families, including ours, may go without NDIS because we cannot access or afford these services.”
— Parent, SA Regional, children aged 10, 8 and 2
“I myself am on a disability pension. I would definitely not be able to afford these treatments. I also don’t drive, so would be unable to travel to do these treatments. This is completely unfair.”
— Parent, NSW Metro, child aged 7
Families read this provision as a postcode lottery dressed up as an evidence test, discriminating against the families whose children most need NDIS support: those with the fewest options, the longest distances to the nearest specialist, and the least capacity to pay for private treatment to satisfy a bureaucratic threshold.
- “We are already at breaking point. Asking parents to do more is not a policy. It is how people break.”
The parental responsibility presumption at proposed sections 34(1G) to 34(1K), and the related informal-supports default, drew the second-strongest reaction in the survey. 94.0% of respondents were concerned about or strongly disagreed with these changes. 73.5% strongly disagreed.
239 distinct comments mention burnout or exhaustion. 102 mention mental health. 39 use the words die, died or dying. 40 respondents explicitly identify as single parents. Nine explicitly mention relinquishment of care.
“I would seriously consider relinquishing my children. I am exhausted every minute of the day and my life is nothing like parents with normal children.”
— Parent, QLD Metro, child aged 15
“If your caring needs for your child requires substantial support, lifting, clothing, showering, toileting, feeding, keeping them safe from running out the house, walking into traffic, keeping siblings out of harm’s way — that is unacceptable. Carers and siblings are burning out. Marriages are breaking up. Families are having to reduce work hours or quit their jobs to care for their children. These families will relinquish care.”
— Mother, NSW Metro, child aged 19
“I am also autistic and I can sometimes not be able to parent if my capacity is low. Autism is a hereditary condition and many parents (diagnosed or not) will be similar to myself. Placing huge pressure on parents to ‘do it all’ with reduced capacity will lead to burnout and further pressure on the already stretched mental health system in Australia.”
— Parent, VIC Metro, child aged 13
The list at section 34(1H)(a), supervision, personal care, transport, emotional support and behavioural support, is presumed to be what a parent provides. Families read this and could
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
not see how it is meant to apply to a teenager who needs continence support, a non-verbal child requiring constant supervision, or a child with profound behavioural support needs. These are not things a parent of a typically developing child of the same age would be expected to provide. The qualifier “regardless of the child’s disability” appears in paragraph (1H)(b) but not in (1H)(a). Down Syndrome Australia have raised the same concern publicly: the Bill’s drafting is broad enough to capture intensive, highly specialised or round-the-clock support as parental responsibility.
“Completely disagree. A neurotypical child does not have to have their nappy change. A neurotypical child doesn’t need one-on-one supervision. A neurotypical child doesn’t have to have two adults hold their hands so they don’t run onto oncoming cars. Completely not parental responsibility. These parents don’t stay up 24 hours a day watching their child for seizures and making sure that they breathe. We do more parenting than the average parent but we also do one-on-one life support.”
— Mother, SA Metro, child aged 10
“I am a solo parent, primary carer and primary breadwinner for twin boys with disability and complex developmental, medical, sensory, continence, physical and communication needs. There is no meaningful parental input or practical support from their father, and I am also parenting in the context of family violence and the long-term impacts that has had on our family.”
— Mother, WA Metro, child aged 3
The prohibition at section 34(1J)(b) on funding whose primary purpose is to “improve household efficiency” was a particular source of distress. Families read it as an explicit instruction that household functioning is not the system’s concern, even when household functioning is what keeps a child safe, fed, clean, in school and out of crisis.
“This is such a hurtful and traumatic statement. The profound impact that a child with disability has on a household, the extra time things take, the inefficiency of the household, it is crippling for a parent and not sustainable. I feel that this will trigger further burnout, mental health challenges and parents who just simply can not care for their children anymore, creating a further burden on the system.”
— Parent, SA Metro, children aged 3, 8 and 12
- “Children change. Plans must change with them.” This theme runs through the two proposed reassessment changes: the move from 21 to 90 days for unscheduled reassessment decisions (s 48A), and the automatic 12-month plan renewal without a Statement of Participant Supports and without a right of review (s 50A). Children grow. They transition. They regress. A plan that cannot adapt to a child’s changing developmental needs is not a plan at all.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
267 distinct comments mention growing, changing, transitions or puberty. The most common practical concern was the loss of fluidity in a system that families need to be responsive to their child’s developmental trajectory, not to a calendar.
“The earlier years I had capacity to help my daughter more. Now she is in school, growing and not being able to keep up with peers — every single year looks different. It gets harder, not easier.”
— Parent, NSW Metro, child aged 11
“My child’s needs grow and change as all children’s needs do as they grow and develop. This proposal completely ignores the fact that she will require new AFOs each year to assist with optimal growth and keep her out of hospital theatre rooms.”
— Parent, WA Metro, child aged 6
“Disabilities and their impacts on individuals aren’t linear. As children get older, this results in increased services to support independence and to continue to develop skills to the best of the individual’s abilities.”
— Parent, NSW Metro, children aged 9 and 8
“Disability is not steady. It is unpredictable and changes can occur at any time.”
— Parent, QLD Metro, child aged 15
Families also raised a problem the Bill’s drafting does not address: the test in proposed section 48A requires the change to be “significant and unanticipated”. Many of the transitions families navigate are anticipated. The move from primary to high school is anticipated. Puberty is anticipated. A child outgrowing a wheelchair is anticipated. Equipment failing after years of daily use is anticipated. Under the proposed test, families read these as falling outside the reassessment criteria entirely.
“So when my child is transitioning to a new life phase such as high school, and tasks that used to be considered parental responsibility aren’t anymore, a plan change cannot be asked for as it is not unplanned.”
— Parent, TAS Metro, child aged 10
“Even anticipated changes such as starting school can lead to needing plan changes. You can’t predict every need that this change could cause. The 90 days means risk to participants and their carers while waiting for a response and potentially lack of sufficient support during this time.”
— Parent, SA Metro, child aged 6
The 90-day decision window drew particular alarm from families who described the Agency already failing to meet the current 21-day standard.
“The NDIS took five and a half months to respond to my 21-day request, so changing to 90 days wouldn’t change anything. They took 18 months to
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
re-evaluate our change in diagnosis, only to be turned down and end up with less money on a three-year plan than when we started.”
— Parent, NSW Metro, child aged 11
“A family can end up in crisis in days. Waiting months is not acceptable. This would have to be a human rights violation in some circumstances.”
— Parent, VIC Metro, child aged 12
The automatic 12-month renewal at section 50A drew slightly less universal opposition at 84.6% combined concern, and a small number of qualitative comments reflected some relief at the reduction in planning-meeting anxiety. But that relief was always conditional on participants retaining a meaningful right to request a change when their child’s needs shifted, and on one-off funding already approved for equipment or modifications not disappearing at plan end.
“How will one-off funding for AT be dealt with? This funding can’t just disappear. Equipment, home modifications, car modifications take time and often this is beyond the plan. With children with complex needs these are constantly changing and need to be reviewed regularly due to changing needs and growth — outgrowing equipment.”
— Parent, SA Metro, child aged 6
- “What my child experiences matters. Peer-reviewed research alone cannot tell you what works for them.”
The new evidence hierarchy at section 34(1E)–(1F), which places published peer-reviewed research at the top and gives the CEO the power to refuse a support where peer-reviewed research is missing, drew 93.6% combined concern and 74.7% strong disagreement.
The most-repeated phrase across this question was “one size fits all” and its variants. Families are not anti-evidence. They are objecting to a hierarchy that places general research above the specific lived experience of an individual child, the clinical experience of treating practitioners who know that child, and demonstrated outcomes that can be observed in real time.
“Peer-reviewed research is itself flawed, insufficient, and poorly lacking in some spheres. It is also often not holistic. Our children are individuals, not the product of a peer-reviewed study. They should be treated as such. We should also be considered experts in our children’s needs. The gaslighting of parents needs to stop.”
— Parent, VIC Regional, child aged 5
“My son rammed his head over and over and over again when he was first diagnosed at two, attempting to do standard therapy in a clinic. After six months of torture for him and me, we found an alternative model and have never looked back. What works for one person may look different for another.”
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
— Mother, NSW Metro, child aged 11
This concern was particularly sharp for families of children with rare conditions, emerging diagnoses, or combinations of co-occurring diagnoses for which population-level research does not exist or is not yet mature.
“My children have rare and complex lifelong disabilities, including cerebellar hypoplasia, cerebral palsy, autism, severe intellectual disability, and significant speech and motor impairments. Their needs cannot be judged only by general peer-reviewed research. Every child’s disability presents differently, and what works for one child may not reflect what another child needs. For children with rare conditions, there may be limited published research, but that should not make their lived experience, clinical evidence, and proven personal benefit less important.”
— Mother, NSW Metro, child aged 14
“The rare genetic disorder my son has is only fairly new. Other people with this disorder are all different with different problems and they need different therapy. How can my son’s needs be considered by comparing them?”
— Parent, NSW Regional, child aged 7
42 distinct comments invoke “lived experience” by name. The Kindship community is well-placed to speak to this theme. Autism, ADHD and developmental delay, the diagnoses reported by 63%, 47% and 27% of respondents respectively, are precisely the diagnoses where individual variation in response to intervention is widest, and where new approaches emerge faster than research can validate them.
- “The Minister should not have this much power, and our children should not be cut without being heard.”
97.2% of respondents were concerned about or strongly disagreed with the proposed Minister’s support determination power in section 34A. 88.1% strongly disagreed. It was the highest level of concern across all six proposed reforms tested.
Families drew a clear line between supporting reform of the NDIS, which many explicitly do, and supporting a mechanism that cuts their child’s plan without notice, without consultation and without recourse. 181 distinct comments invoke the Minister, bureaucracy or politicians. 116 use the language of cuts, robbed, stolen or stripping.
“Way too much power for one person. This doesn’t even make sense. Once again it’s all about money.”
— Parent, QLD Metro, child aged 15
“This is incredibly dangerous politically. We don’t have any protection against the political agendas of future governments.”
— Parent, VIC Regional, child aged 9
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
“Individuals’ lives are built around these budgets. To cap is to take away their rights to live and exist.”
— Parent, WA Metro, child aged 9
The first announced application of section 34A is a 50% reduction in Social and Community Participation budget allocations and a 10% reduction in Capacity Building daily activities, commencing 1 October 2026. The framing of social and community participation as a discretionary or lifestyle expenditure does not match the lived reality of the families we heard from. For many of their children, this category funds essential supervision, behaviour support and inclusion supports without which the child cannot leave the house safely.
“Community participation is all my son will ever have. He will never work. So if this funding is cut he’ll sit in his wheelchair at home, day in and day out.”
— Parent, WA Metro, child aged 18
“We have already had the budget removed from two of our children’s plans with no notice and no notification.”
— Parent, QLD Regional, child aged 10
The procedural concern is at least as strong as the substantive one. Families raised three objections consistently: changes happen without notice; there is no right to individual review; and the assumptions underlying the cut sit in documents the Agency can update without Parliament seeing it. The phrases that appeared most often in the comments were “no notice”, “behind closed doors” and “how is this allowed?” That is not a community objecting to reform. That is a community asking for the process that the Bill removes.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
What we ask of the Committee
Kindship is an organisation built on lived experience. 89% of our staff have personal experience of disability and/or are caring for a young person(s) with disability. Our role in this process is to bring the voice of our families to the Committee, not to draft legislation. The detailed legislative analysis of this Bill has been done by submitters with the legal and policy expertise to do it well, and we commend their work.
In particular, we draw the Committee’s attention to two submissions which between them cover, with rigour and detail, the great majority of the legal and structural issues our families raised.
Submission 193 Sam Paior’s submission sets out 35 specific, drafted The Growing Space amendments across seven areas. It speaks with the authority Sam Paior, 25 May 2026 of a long-standing member of the NDIS Independent Advisory Council, founder of The Growing Space, co-founder of the Self Manager Hub, co-founder Make it Easy and a parent of two adult NDIS participants.
Individual submission Laura Schutz’s individual submission brings a sector-wide Laura Schutz perspective drawn from 21 years of professional and lived 27 May 2026 experience across NDIS support work, support coordination, training and consulting. It is particularly strong on procedural fairness, the impact on plan reassessments already in progress, and the accessibility of submission processes themselves.
Both submissions reach conclusions consistent with what the 768 families in our survey told us. Kindship commends both to the Committee.
What our families ask
From the 768 families who spoke to us through this survey, six questions emerge consistently. They are not legislative drafting. They are what our community needs the Committee to carry into its deliberations:
1. Recognise that lifelong disabilities are lifelong. Where a diagnosis is, by its nature, permanent, the Bill should not require families to prove the impossible by exhausting treatments that cannot change the underlying condition.
2. Do not punish families for where they live or what they earn. Access barriers to treatment, geographic, financial, cultural, must be considered in any assessment of whether a treatment is appropriate for a particular person.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
3. Recognise that parents of children with disability are not parents of typically developing children. Any parental responsibility presumption must measure against the reasonable expectations of a parent of a child of the same age without disability, must account for the parent’s own capacity and any disability they themselves carry, and must account for the cumulative caring load.
4. Make space for the children in the system to actually be children. Plans must be able to adapt to anticipated developmental transitions, not only to crises. The reassessment pathway must remain meaningfully accessible, and decision timeframes must be honoured.
5. Give equal weight to lived experience, clinical experience and peer-reviewed research. Missing peer-reviewed evidence must not be a veto where other categories of evidence demonstrate what works for an individual child.
6. Preserve parliamentary oversight and individual review rights. Where the Bill grants the Minister power to reduce funding to groups of supports in existing plans, the assumptions must be visible to Parliament and the families affected must retain a meaningful right of review.
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
Closing
The families who responded to our survey are not opposed to reform of the NDIS. Many of them said so plainly. They want a scheme that works, that lasts, and that targets fraud and provider misuse without targeting the children who rely on it.
What they are opposed to is reform that happens to them rather than with them. They were not consulted on this Bill. It was written in a language they were not invited to read. They had eight days to respond to four hundred pages of legislative drafting. They are opposed to the loss of the parliamentary scrutiny and individual review rights that protect their children from decisions made elsewhere about their lives.
Our role is to bring their voices into the Committee’s deliberations. We have tried to do that with the discipline of accurate quotation, honest representation of the numbers, and respect for what the families chose to share with us. The full deidentified responses are included at Appendix 1 so the Committee can read the raw data itself.
Kindship’s position is that the Bill should not proceed in its current form.
The community was given 14 days to respond to nearly 400 pages of complex legislative drafting. 768 families found the time anyway to tell you what they think. Please find the time to listen to them.
Hayley Thiele
Chief Executive Officer
Kindship Group
On behalf of 768 Australian families
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Submission 738
Kindship submission — NDIS Future Generations Bill 2026
Appendix 1 — Deidentified survey responses
The full deidentified responses of the 768 families who took part in the survey are provided as the companion file Kindship Senate Submission Appendix1 Responses.
The survey was conducted between 24 May and 27 May 2026. It tested six high-impact proposed reforms of the Bill, each accompanied by an optional free-text response. The proposed reforms tested were:
• The new “all appropriate treatment” requirement and the permanence test (proposed sections 25A and 24). • The parental responsibility presumption and the informal supports default (proposed section 34(1G) to 34(1K)). • The hierarchy of evidence prioritising peer-reviewed research (proposed section 34(1E) to 34(1F)). • The extension of the reassessment decision window from 21 days to 90 days and the removal of the deemed decision (proposed section 48A). • The automatic 12-month plan renewal without a Statement of Participant Supports and without a right of review (proposed section 50A). • The Minister’s power to reduce funding for groups of supports in existing plans, with no right of review (proposed section 34A).
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