28 May 2026
The Committee Secretary
Community Affairs Legislation Committee
Department of the Senate
PO BOX 6100
Parliament House
CANBERRA ACT 2600
Dear Sir/Madam
RE: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, introduced 14 May 2026 - SUBMISSION
We write on behalf of our Son who is an NDIS participant and is very fortunate to receive NDIS funding to assist him to live independently with 1:1 24/7 supports. However, the process to secure adequate NDIS funding to meet ’s high intensity and complex support needs has not been straightforward and has necessitated our advocating on his behalf over a period of six years. This included an application to the Administrative Appeals Tribunal in April 2022 to address a negative decision to our NDIS “Internal Review Request”. Following another Internal Review (January 2026), now has an NDIS Plan that is adequate to meet his needs. We have examined the Draft NDIS Amendment Bill 2026 and have grave concerns about a number of the proposed changes, and how they would negatively impact ’s NDIS Plan.
As background, is 48 years of age. At age 3 months he suffered his first prolonged and life-threatening seizure (status epilepticus) which required hospitalisation in ICU for several days to determine the cause. Unfortunately, despite extensive testing, the cause was
undetermined. Since then, has suffered frequent and uncontrolled seizures, often
requiring emergency medical intervention. He has a profound intellectual disability, due to the excessive number and severity of seizures over so many years. He has limited mobility being able to walk only a very short distance inside his home. He requires physical 1:1 support to mobilise. He is unable to perform any task independently, has very limited comprehension or ability to respond to requests and is non-verbal. To ensure he is not placed “at risk” he requires 1:1 24/7 support in every aspect of his life. A recent (September
- Functional Capacity Assessment scored on the Care and Needs Scale (CANS) and stated “ is at high risk of injury or death due to his significant disability.”
resides in a Queensland Department of Housing wheelchair accessible 2-bedroom unit, where he receives 1:1 24/7 care provided by four carers whom we engage on a roster basis. He utilises his Social and Community funding to access the community through a centre-based facility and with his carers who provide him with 1:1 support. His in-home carers have worked with him long-term, 18, 12 and 5 years.
We are ageing parents (75 and 76) who have cared for and advocated for our son his entire life. We engage daily with ’s carers and support his attendance at medical and specialist appointments. We have self-managed ’s NDIS funding for the past 7 years by operating our own payroll service using an ATO issued WPN, enabling us to engage the supports at a lower cost, consistent with the NDIS Pricing Arrangements and Price Limits. We thereby save the NDIS a significant amount each year from the total cost calculated at NDIS
Price Guide for an equivalent Service Provider managed Plan. This approach ensures that receives the necessary care while maintaining cost-efficiency and value for money.
MAJOR CONCERN WITH THE NEW s 34A OF THE NDIS AMENDMENT BILL 2026
Under the new s 34A of the Bill, the Minister proposes to make a determination of a 50% reduction of the funding across the Scheme for “Assistance with Social, Economic and Community Participation” (and Capacity Building Daily by 10%), with no merits review. The only mitigation is s 34A, Para 3 “In making the determination, the Minister must have regard to the safety of participants”.
POTENTIAL NEGATIVE IMPACTS
The proposed budget cut would have significant negative impacts on participants with 1:1 24/7 support needs, who currently use Social & Community funding to spend hours outside the home with a worker. Halving the Social & Community budget without increasing Daily Home and Living hours would functionally confine them indoors, without required support and supervision. There is no provision to protect participants with complex, high support needs from a percentage budget cut that has been worked through the politics for the average case. Participants cannot appeal the budget cut itself, but can only appeal how it is applied to their individual plan, and even then, only if the agency makes a “reviewable decision”. We strongly oppose this proposed funding cut.
RECOMMENDATION
That s 34A of the Bill be amended to require a separate determination process, or an exemption mechanism for any cohort with high intensity, complex support needs requiring 1:1 24/7 care, such as our Son. Without it, a one-sized cut delivered through s 34A would have severe cohort-specific harm on those most in need.
Thank you for taking the time to read our submission and we look forward to receiving your favourable response.