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

Submission 3679

Individual submission to the Senate Committee:

My sister has a 5-year old daughter with Angelman’s Syndrome; something that has profoundly affected her life, as well as the life of her husband and eldest daughter. As siblings, we were always close and, as her uncle and godfather, I have spent a lot of time with my sister’s family. The news that my goddaughter was diagnosed with Angelman syndrome was life-changing for our family, and, since that point, I have had many opportunities to observe the way in which the family functions, supports and cares for her. While they love her dearly and do their very best for her, it takes a severe toll on their family. Increasingly, it is clear that the level of support and care required moves well beyond what is possible for parents to manage.

Caring for a child with profound disability is a constant challenge, where supervision is required at all times, day and night. Increasingly, with any mobility that she has, there are safety hazards associated with her movements. At night, this presents a challenge that will become increasingly difficult to navigate as she becomes stronger, without her necessarily understanding danger. This presents a constant risk, as well as promoting fear for the parents. Having toileting accidents at night is also an ongoing challenge for the parents. This also extends to daytime supervision. Without the capacity to have support workers and therapies helping with maintaining her safety, this becomes a serious concern for her welfare. In reality, constant parental care for safety puts unrealistic expectations on parents and is well beyond the capacities of normal parenting.

Of course, families offer assistance during family events, but nobody can offer genuine help on a daily basis. It is a challenge that is constant for parents that none the less have to pay for a mortgage and raise another daughter. The daughter with Angelman requires constant support that no other members of the family are able to offer. We all have our jobs and families. Parents are elderly or no longer living. Without sufficient funding, children with such profound illnesses cannot be cared for, helped and supported, something that the NDIS was designed to support.

I have severe concerns about my goddaughter’s safety, especially given her reduced mobility and lack of understanding of safety. Unless always physically monitored and supported, falls, especially with stairs involved, could be catastrophic. I also worry a lot for my sister and her husband, especially if funding is reduced and leads to them not being able to have support staff caring for their daughter. Extreme fatigue and mental health issues are likely to develop is support for their daughter is withdrawn.

Given my niece’s inability to communicate, having therapy and support workers becomes especially important. Therapies provided through funding, including OT support, physiotherapy, behaviour support are essential for my goddaughter, and are the only means

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

Submission 3679

possible for helping maintain some sort of communication, mobility, regulation, safety and independence.

Funding is essential, without which my sister and her family cannot function, let alone work, care safely for their daughter at home and participate in any community or social aspects of life.

Ultimately, reduction in funding will clearly put immense pressure on my sister and her husband, prompting them to address responsibilities that move far beyond the capabilities associated with normal parenting. Reduction of funding is also likely to lead to increased costs associated with hospitalisation, crisis care, institutional care or even family breakdown. The pressure put on my other niece, especially as she gets older, is also a significant concern.

Children like my goddaughter represent the purpose and essence of NDIS – support for children with profound and lifelong disability. These are the exact children that urgently need funding, without which their lives, and the lives of their parents become untenable and impossible. Thus far, funding has allowed for my sister to arrange support for her daughter, meaning the family have somehow functioned without serious accidents and family breakdown. Even with this, they are incredibly stretched and life is exceptionally hard for them. I worry for the family all the time. If funding is reduced, I have severe fears for the health and welfare of my goddaughter and her parents.