National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1642

Senate Community Affairs Legislation Committee

deeply concerned about planned changes to the NDIS. It is abundantly clear that something has to be done to rein in The Scheme’s runaway expenditure but it is also apparent that doing so creates uncertainty and alarm for my daughter, Anderson who is, in large measure because of the stability provided by the NDIS, on the cusp of embarking on more independent living arrangements.This next phase of her development and smoother integration into mainstream-living is likely to demand more of the scheme - in a transitional sense - than less. At present she relies on her Plan to gradually build more capacity towards the independence she will require when we, her ageing parents, are no longer able to provide it.

     is 36 years old, living with a mild/moderate syndrome Cri du Chat. This is a genetic syndrome where part of her 5th chromosome is missing, leaving her with an intellectual disability. She will live with this all her life.

     is a very social, happy person, who lives with us and works 2 days a week as a cafe assistant, where she cheerfully chats to the clients and has become a fixture of the establishment.

She attends a course run by the Centre for Disability studies - an association at Sydney University. Both–these activities allow her to mix in normal environments, which she loves.

I recently had a health issue that made me realise how much my daughter relies on me. If I wasn’t around, how well would she survive? What do I need to put in place to make life secure, functional and adaptive for her.? For anyone on the outside it’s hard to appreciate just how complicated the kaleidoscope of things that are needed to make her life function. We, her parents, have been doing what is necessary - and possible - for her entire life and we are well aware that without us, would struggle to maintain both her quality of life and her useful role in society. She needs support and deserves it - both formal and informal. should be living with people her own age, who like to do the things she does. -As noted, she is on the cusp of trialling independent living, as -we are keen for her to establish a new routine outside of the family/home framework and with this in mind we have sought to modify her present arrangements so she can get more support for capacity building in the home, shopping, cooking and basic home maintenance. This scenario would include a Support Co-ordinator and someone to manage the payment of NDIS bills. At the moment is self-managed.

Running a house sustainably is beyond her autonomous ability.She requires-help with paying utility bills, solving problems when things go wrong, organising appointments and meetings, being on time for appointments, tavelling to new places, following a map, requesting guidance when things get too much.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 1642

Organising a calendar of events is something to work on. She crucially needs more capacity building.

Projecting forward it would be enormously beneficial if she found a friend/housemate to share the problems. Someone Just one who she can call on to join her on an activity. At present this is largely the role of her support worker. Diminishing her support by 50% - as suggested by the new legislation - from 4 hours a week to just 2 would not be just detrimental, it would compromise the advances and capabilities the existing program has shaped, As an only child, with no network of close friends, the existing Plan has allowed her to explore Sydney and its environs and attend cultural events with a support person. Often this person stays attached to for several years, whilst the support person studies allied health courses - e.g. Speech pathology and Occupational Therapy.The investment is thus amplified and there’s a win-win situation of lasting mutual benefit. - now is confident to safely explore parts of Sydney by herself, but really she needs to share these experiences with another person to boost her ability and engender sufficient competence to go it alone. has been in the NDIS program since its inception and has benefited in many ways. She has attended Physiotherapy once a week to assist her with balance and strength. Restricting that to just 12 sessions a year would be restrictive and the flow-on effect to the economy obvious.– Funding for social participation should not be cut by 50% - that’s half…and half of something can make it unworkable. Take two wheels off a car and it’s useless. Remove one lens from spectacles and they cease to be useful, In s case, particularly, where it would make it difficult to employ someone for such a short time. Trialling Independent living would cost more for Capacity Building, so any cap on such Plans would restrict that trial. - Each person has individual needs so putting a blanket cut over all areas, I feel, will disadvantage a lot of people, in our case moving towards Independent Living and eventually, not needing NDIS support at all.

She is a loving, caring person with a wicked sense of humour and a big need to be part of this wonderful world we live in

Kind Regards