NDIA Accountability Project

Daughter with intellectual disability and chromosomal abnormality faces increased isolation

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

Submission 2093

Dear Senators

I am writing about the proposed changes to the NDIS.

I have a 19-year-old daughter with moderate intellectual disability and health and disability challenges due to a rare chromosomal abnormality. Her challenges are enormous, which makes my life hard as well.

I love my daughter very much. I want her to have as regular a life as possible, and to have a quality of life that the rest of us take for granted.

I have to work reduced hours because of the level of support her daughter needs, even with the current level of support she receives from the NDIS, and as a single parent. I am constantly juggling caring for her with that of my 15 year old son. It’s a 24/7 job, and the NDIA is the only government body that still considers unpaid parental supervision as a reasonable support for adults.

Even with the current system, I had to write to my federal MP just to get an appointment with a planner last year. Without this intervention, I was told it could be six months without sufficient funds to cover my daughter’s therapies or community access. After the meeting, although her funding increased, it was still only half of what was recommended by specialists to support my daughter.

I worry about what will happen to my daughter when I am no longer around to care for her. I worry about the burden this will place on my son, and I worry about exhaustion and burnout for myself in the meantime. From my experience with the NDIS last year I had to resume antidepressant medication to help cope. Again I worry about all of this even with the current levels of NDIS my daughter gets.

I understand firsthand how important the NDIS is. The NDIS gives me small breaks to reset from my caring responsibilities. It means that I can continue caring for my daughter and working. I am distressed though that the level of support and autonomy my daughter and I have is less than when she was at school, and this will not change in the foreseeable future.

The things that worry me about the proposed changes to the NDIS are:

  1. That the Minister will have the power to cut participant’s plans at will, despite plans being approved by the NDIA;

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

Submission 2093

  1. That the 30% proposed cuts to social and community supports will shift more responsibilities and work back onto families, especially women, and that this will make their lives so much harder when they are often already running on empty;

  2. The proposed funding cuts will increase the physical and mental health and financial burden on already exhausted carers.

  3. That the proposed cuts to these supports will make my daughter’s life much more isolated. She also wants to live independently but this will be impossible if these supports are cut;

  4. There has not been proper consultation about the proposed changes with the people - participants, carers and service providers - who will be affected.

  5. That the proposed changes signify that the government now considers the NDIS like an income support scheme (welfare) rather than as a support system that people with a disability need to live in our communities and lead dignified and independent lives.

Thankyou for considering my concerns.

Yours faithfully