LMNA Congenital Muscular Dystrophy impacts social access supports (Family or carer experience)

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

Submission 856

To Whom it May Concern,

This submission responds to the Australian Government’s proposed “Securing the NDIS for Future Generations” Bill currently before Parliament. This Bill should not be passed.

The National Disability Insurance Scheme (NDIS) states on its website that its mission is to “make a meaningful difference by empowering people with disability to choose and achieve their goals,” operating under the principles of “Choice and Control” to maximise independence and create a world-leading disability support system. The proposed Bill undermines these principles and will prevent the NDIS from fulfilling this mission for hundreds of thousands of Australians with disability and their families.

My 17-year-old son, , D, lives with LMNA Congenital Muscular Dystrophy and depends on a powered wheelchair for all mobility. Due to his high support needs, maintaining full-time employment has always been difficult for me, placing significant financial pressure on our family.

When D began primary school, I was only able to work a few casual hours each day because of the frequent hospital visits and care responsibilities. As he grew older and entered high school, the school was better able to support his care needs during the day, allowing me to gradually return to my teaching career on a more regular part-time basis. I have since secured a 0.8 teaching position, which for the first time has provided some financial stability for our family.

If this Bill is passed, particularly the proposed 50% reduction to funding for social and community access supports, I will likely be forced to leave my current role and return to full-time caring responsibilities. These changes will significantly reduce D independence at a critical stage of his life, when he is beginning to develop his identity, confidence, and future aspirations. Instead of supporting inclusion and independence, these reforms will increase his reliance on me to access the community and participate in everyday life.

The proposed reforms come at the expense of my son’s safety, dignity, independence, and inclusion.

The NDIS was originally established on the principle that participants would receive funding based on their individual reasonable and necessary support needs — not on the government’s willingness to reduce spending. This Bill gives the Minister the power to reduce or limit supports for entire groups of participants without proper consultation or justification. That is deeply concerning.

I feel angry, disappointed, and betrayed by what this government is proposing, not only for my son and our family, but for the future of all Australians living with disability who rely on the NDIS to live with dignity and independence.