National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3166
My name is and my daughter, , 37 years old, is a NDISparticipant. She has been part of the scheme since 2011 when she was eligible for the first NDIS trial in Tasmania. She has a neurological genetic condition called Angelman syndrome which is a permanent, significant and complex disability. Her functional capacity is affected by both severe intellectual disability and communication issues (no speech) as well as physical problems affecting her mobility, sleep disorder, epilepsy as well as behaviour issues. She is a very vulnerable person who relies on others to provide her with a safe and happy life. lives full-time in SIL accommodation in Glenorchy, Tasmania but has regular family contact. She is a delightful and loved woman who brings joy to those around her.
About two years ago, she had successful hip replacement surgery. Her hip problem was caused or exacerbated by her problems with motor tone and delayed milestones related to her chromosome disorder. The success of the surgery was due to many factors and people: a talented surgeon in the public system and the medical staff, pro-active planning provided by both her Disability Specialist and Rehabilitation Specialist, support in hospital provided by staff at the group home as well as support co-ordination provided by her Co-Ordinator of Supports funded by her plan. In addition, we can thank incredible post-surgery rehabilitation whereby her Physiotherapist, Occupational Therapist, Group Home Manager, Support Workers (at the group home and at day support) worked together as a team. She can now walk with one-person support holding a hand or independently, with a walker and supervising support worker. Without this input, including, of course, the necessary funding from the NDIA she would have continued to live in pain, she would be a non-walker who could not weight-bear. She would be reliant on others to hoist her from her chair to the toilet and onto her bed.
I wish to highlight too, the importance of her day support program. attends her local program three days each week. It is vitally important that she is part of a community away from her home as she has friends there as well as paid workers who work for a separate organization. This provides safety for her with more people knowing her closely. They are all looking out for her best interest. She is provided with activities that are suited to her level of interest and understanding – the staff are fully trained to provide life skills training, physiotherapy and communication opportunities, meal-time supervision and care that she needs to lead a well-rounded, safe and good life. Without this community participation, there is a risk of becoming isolated and regressing physically and mentally. Without the extra practice with her Augmentative and Alternative (AAC) Communication system provided by her Speech Pathologist, she may have to resort to ‘negative’ behaviours to get her message across. Day program funding needs to be maintained and ‘ring-fenced’.