National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2495
Submission to the Senate Committee re upcoming proposed changes to the NDIS : re with Cri du Chat syndrome.
I have known and her family for seven years. Her oldest daughter, , is 33 and was diagnosed with Cri du Chat syndrome at age three. She cannot live by herself and still lives with her parents. Considering her condition, with the constant support of her family and carer she manages fairly well with the support of the current NDIS funding arrangements.
She has received care and support which has included stimulating social activities. This has taken the load off her mother, , in particular who has had to manage caring for her family and particularly her daughter for over 30 years.
Six years ago, ’s husband, , was diagnosed with Parkinson’s disease and his condition has escalated/deteriorated significantly in the last 12 months. And so is under even more stress, caring for him, involving endless medical appointments and considerable broken sleep. His memory issues have begun which just compounds the situation. I really feel for her and any NDIS budget cuts that reduces ’s opportunities to interact and enjoy life will impact the whole family.
But I especially object to the proposed 50% cuts to social and community participation. We have taken to many of these events, so I have seen firsthand how excited gets to be participating in these social events. She thoroughly enjoys them and mixes well with the other attendees. It is an enormous load off ‘s mind to know gets this stimulation and interaction, has lots of fun and continues to see and make long standing friends.
I implore you to take this into consideration when reviewing the proposed cuts to the NDIS budget. I am sure there is no ‘one size fits all’ solution for support and funding for people under the NDIS umbrella, but those with Cri du Chat syndrome have extra special needs for their entire lifetimes.