Submission 1509

Senate submission

NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

I thank you for the opportunity to submit this, albeit on such a short time frame. I write as I am concerned about how a range of the NDIS proposed changes will affect my son. I am now too old to care for him safely, and he lives in supported accommodation. I will focus on how the proposed funding cuts will impact us. My personal case should be read in conjunction with the extensive submission made by the Cri du Chat Support Group of Australia, an organisation of which I am the President.

About My Son

I am the mother of J, who is 40 years of age and has Cri du Chat syndrome. J lives in supported accommodation in Reservoir, Victoria. J was born with a lifelong diagnosis of Cri du Chat Syndrome (otherwise known as Cry of the Cat), as he has 30% of the short arm of Chromosome 5 missing, resulting in a rare and complex condition. It is highly likely his disability is the result of his father being exposed to Agent Orange in Vietnam; a matter that has been recognised by the Department of Veterans Affairs. Cri du Chat syndrome is present from birth, genetically confirmed, and permanent. There is no cure and no treatment that changes the underlying condition.

J’s clinical profile is well established in the peer-reviewed Cri du Chat syndrome literature. J’s disability is characterised by the following:

• Severe Intellectual disability.
• Severe Speech and language delay, with few words spoken, which are indistinct.
• Hypotonia, also known as low muscle tone, impacts his gross and fine motor skills, balance, physical endurance, and mobility, and he can trip over easily.
• Severe behaviours of concern, including self-injurious behaviour (head banging, skin picking), hyperactivity, repetitive behaviours, and emotional dysregulation.
• Anxiety and obsessive-compulsive features, which interact with his communication impairment and intellectual disability to generate behavioural escalation and high levels of personal distress.
• Feeding and swallowing difficulties with a risk of choking.
• Gastrointestinal and bowel management issues across the lifespan, most particularly chronic constipation, which can contribute to behavioural escalation.
• Prone to wandering with no road or personal safety skills.
• Needs lifelong, 24-hour active supervision and support.

J is also a social and happy individual who loves meeting people, listening to and playing music, and generally going out and taking trips away.

History

J has lived in supported accommodation since 2013, prior to the implementation of the NDIS. As a single mother and as his guardian, I would have to say that the restrictions of the NDIS have had a negative impact over time. Prior to the NDIS, I was in a Victorian trial where I managed the equivalent of his social and community participation funding. In addition to seeing a band once a week with a support worker whom I employed and going to his day program, Northcote Support Services, five days a week, J, for many years, went twice yearly to overnight weekend camps with People Outdoors that utilised volunteers as support workers. He loved these camps and still misses them. However, he became ineligible for these once the NDIS was implemented, as they were deemed only for respite for participants living in families, not for those living in SIL accommodation. Nevertheless, J kept packing his bag, trying to tell me he wanted to go away. I have subsequently taken him on a holiday once a year, fully paid for by me, although I come back exhausted, as I do not have a support worker funded to assist me. The house J lived in was owned and operated by the Victorian government’s disability services under a block-funding model. In this block funding, he had a higher staff ratio (2 staff to 3 residents) than he

Submission 1509

does now (1 staff member to 3 residents), and the workers enjoyed taking the participants out. He was able to go swimming, out for lunch and a number of other activities either on his own or with the other residents in the house, as the workers could work flexibly and the house had its own bus. Under NDIS, and with the contracting out to accommodation providers in the community, the roles of accommodation support worker and community support worker have been separated and independently funded into two buckets, i.e., SIL and social and community participation. This means that J’s accommodation workers no longer take him swimming or the residents on picnics, as this is the role of the community worker. Given that J only has 3.5 hours of community support a week, he do not get out as much as he did, nor as much as others in the house who have a larger allocation of community support. As a result, I continue to take him out to see a band every Sunday so that he gets a weekend outing. I suspect there are very few parents in the community who need to spend every Sunday taking their 40-year-old son out to a pub or music venue.

Whilst I appreciate that he now has speech and occupational therapy, neither of which was funded before the NDIS, both his SIL and social and community participation funding have been reduced rather than increased over time. The latest was in his plan last year, June 2025 – June 2026, in what was euphemistically called a “step down plan”, i.e., a cut to his day program funding. To quote: As this is a step-down plan with a base-ratio adjustment to 1:3 in SIL and SDA, the base-ratio for Group Activities will also be adjusted. For the first 26 weeks of the plan, the Group Activities base-ratio will continue to be 1:2, and for the second 26 weeks, it will be adjusted to 1:3”.

His SIL funding was cut by $30,000 under this ‘step-down plan’, and, given that his house was running at a deficit, his accommodation provider gave one month’s notice of withdrawal of service. This was a particularly stressful time for me as a parent, and I was responsible for interviewing and selecting a new SIL provider who was prepared to come on board despite the house being in a deficit. A change of circumstances plan for J is currently being assessed in light of his house being run by a new provider who is more vigilant about documenting needs and incidents, and in knowing what staffing is needed to ensure J’s safety. It goes without saying that I am very anxious about the outcome if the funding issues are not addressed.

Current Funding

J’s NDIS plan covers SIL funding at a 1:3 ratio (previously was 1:2 as mentioned above), except for two hours a day to assist, as he cannot shower or dress himself, or take him to dental and doctor appointments. The social and community participation budget for his day program is for 4 days (previously 5 days) a week at a 1:3 ratio (previously 1:2, as mentioned above), with 1.5 hours of 1:1 time, so he can attend a cooking program. His community access budget only allows for 3.5 hours a week, which provides a 1:1 support worker to take him to see a band one night a week. It was 5 hours of 1:1 community access; 1.5 hours were taken away so he could have 1:1 during the day program’s cooking activity.

Why I’m concerned about this Bill

J lives in supported accommodation because his support needs cannot be safely met with me as a single parent who is now retired, and he is of an age where he should have his own home and relationships within his local community. The NDIS funds are intended to provide both accommodation and social and community activities, enabling him to live independently of his family. These two things work together, particularly given the role that accommodation workers have become so restricted in, and they cannot safely take high-need residents out with a 1:3 staffing ratio. The proposed Bill would cut social and community activity in half, with no plan in place to replace this essential component for those with complex needs.

1. The 50% social and community participation cut

A 50% cut to the social and community participation budget will halve the number of days J can attend the day program, from 4 to 2 and he would lose contact with many of the relationships he has in the different activities he participates in. His existing accommodation provider will not be able to sustain the service at reduced funding, and J would spend additional days in his accommodation without structured activity or adequate staff support, given the existing 1:3 staff ratio. Without structured activities to occupy him, he quickly becomes bored and can engage in a range of at-risk and

Submission 1509

self-harming behaviours. These include wandering from his accommodation, knocking at the doors of strangers’ homes, breaking equipment in the home and self-harm via pulling out his hair, hitting his head or skin picking his forehead.

For J, the highlight of his week, which he enjoys immensely, is seeing a band. To halve his meagre 3.5 hours of community access a week is non-viable and would end these outings. The Government’s own Explanatory Memorandum acknowledges these changes could likely impact other mainstream service systems, but provides no plan for what this means for people like J, for whom there is no informal support alternative and who requires intensive supervision to ensure his safety.

Provider viability and thin markets

Providers who support people such as J in day programs operate in what the NDIS calls ‘thin markets’. They serve small numbers of high-needs participants, many of whom require 1:1 or higher staffing ratios. A 50% cut to the funding that pays for day program attendance will push many of these providers to the point where the service is no longer financially sustainable. If his day program provider exits and J loses his placement, there may be no alternative provider in his area. His accommodation SIL provider may also withdraw service, leaving J potentially homeless or having to go to a less-than-adequate placement.

No right to challenge the cut

Proposed section 34A gives the Minister the power to make this cut by legislative instrument, with no requirement for individual assessment and no right of merits review for the participant. I will have no mechanism to challenge the cut, even where the impact on his safety and well-being is clear and well-documented.

The Royal Commission contradiction

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability found that segregation increases risk and called for people with disability to be supported to live in the community. Day programs and individualised community access are what make community living meaningful. Cutting the funding that enables community participation for people in supported accommodation runs counter to the Royal Commission’s recommendations.

What I am asking

• Reject the proposed 50% cut to social and community participation funding and oppose the amendment to s.34A.
• Ensure that people living in supported accommodation who have no informal daytime support are explicitly exempt from any blanket reduction to the social and community participation budget.
• Require the Minister to conduct an individual impact assessment before any support determination takes effect on a participant’s plan.
• Make all support determinations subject to merits review.
• Require an assessment of provider viability before implementing cuts in thin markets.

Yours sincerely,

Publication preference: Please keep my name private.