National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2009
29 May 2026
Submission on the Future Generations Bill
To whomever it may concern,
I am writing on behalf of my 2 adult daughters who have complex disabilities and are both on the NDIS scheme. My 33 year old daughter lives with Rett Syndrome – a complex neurological disorder causing severe physical and intellectual disabilities . My other daughter has just turned 28 and has an intellectual disabilities and a cerebral visual impairment relating to the birth defect she was born with. She also has severe anxiety.
My concern relates to the part of the Bill that would reduce capacity building supports / reduce social and community participation supports / restrict plan reassessments / allow future funding reductions across groups of supports.
- The reduction of funding available for Social and Community Funding. This will limit many people in accessing the community. It will isolate them inside their homes. My younger daughter relies on this funding to do her volunteer work at an Aged Care Home, Serving at lunch at an Aged Care Day Facility and at Hollywood Hospital. It will also prevent both of my girls to access their Riding for Disabled and hydrotherapy programmes which they have been attending for many years.
- The reduction in capacity building supports. a. My daughter who has Rett Syndrome especially needs a high level of funding available for: i. occupational therapy, and physiotherapy for exercise programmes, joint mobility, bone density and for reviews and trials and organising equipment. She uses specialised bed, sleeping supports, chairs, power cheelchairs, commodes, modified vehicle, AAC device and orthotics. ii. speech therapy for communication. She uses a Tobii device for eye gaze communication. iii. Speech therapy for dysphagia and mealtime management as she is a very high risk for choking and aspiration and does not eat anything orally. She is fed by a PEG tube with a feeding pump. iv. She also needs a dietitian for review of her nutrition needs, her feeding regimes and also needs to see a continence nurse for her continence equipment. v. If she did not have access to therapy supports she would be at risk of pressure sores, contractures, fractures, and choking /aspiration leading to pneumonia and/or death. b. My other daughter also needs physiotherapy for her exercise programmes and the OT to help her with her life skills and managing in the community. She also needs assistance with using her white cane for her visual impairment. She
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2009
also has dysphagia and mealtime management. If she did not have therapy supports she would be at risk of falls, accidents in the community and choking leading to pneumonia/death. 3. Restriction of plan reassessments. This is a concern for many people as our situations can change very quickly. My husband and I are at retirement age and our daughters live in their own SDA home which we built for them. At present they have a lovely home and sufficient funding which gives us great peace of mind. If funding was greatly reduced how would be able to have confidence that they will remain well- cared for even after we have died? If we became ill or one of us died or one of our daughters deteriorated we need to have the ability to ask for a quick and urgent reassessment otherwise our daughters are at great risk.
I strongly urge the government and the Ministers to remember the aims of the NDIS which were to give participants choice and control over their lives: who they want looking after them and entering their homes and the ability to enter the community just like every other citizen of this country. This Bill in its current form does NOT recognise this.
I want Parliament to change the Bill to ensure that there are no reductions to participants access to occupational therapy, capacity building supports or community participation supports.
Kind regards