Submission 2214

RE: Inquiry into the NDIS Amendment (Getting the NDIS Back on Track) Bill

Dear Senators, I am writing to formally express my deep concerns regarding the proposed changes to the National Disability Insurance Scheme (NDIS).

I am caring for my adult child with Down Syndrome who is directly impacted by the NDIS. While I am ageing and still trying to work part-time, the daily challenges of caring for my adult child with Down Syndrome are profound, and navigating life with limited support is incredibly difficult. In addition to this, several of my other family members are suffering from serious health issues as well and require my attention.

After caring for my adult child since birth, I feel burned out and only get a break when my child is attending programs funded by the NDIS. Because of the seriousness of the disability, only disability programs are suitable to deliver the required care.

Due to this intensive level of care required, I am only able to work part-time because the level of care required for my daughter is a 24/7 responsibility shared tightly within the family, a juggling act that became even more overwhelming in the past five years since several family members have suffered from serious health issues and one family member has since passed away.

As a parent, I am wondering what will happen to my child when we are no longer around to provide the care.

The NDIS is a vital lifeline for my adult child and for me. It provides the essential support structures that allow me to catch my breath, reset, and keep going as a carer, while feeling completely burned-out at the same time.

I am deeply concerned by the following aspects of the proposed legislation:

• Unilateral Ministerial Powers: Giving the Minister the power to overrule the NDIA and cut participants’ plans arbitrarily,

Submission 2214

undermines trust and strips stability away from vulnerable families.

• Shifting the Burden of Care: The proposed 30% cuts to social and community supports will inevitably shift the unpaid care burden back onto families—disproportionately impacting women who are already stretched to breaking point. My adult child with Down Syndrome needs professional care due to the level of disability and this cannot be replaced with no care at all. It will result in me having to stop working to care for my adult child with disability.

• Threat to Local Service Provider Viability: Reducing community participation budgets will cause essential, specialised local providers—to lose clientele, threatening their financial viability and reducing choice for participants. As a result, only services focused on money will continue and these services often only accept people with ‘mild’ disabilities, while there will be no professional services for people with profound disabilities.

• Social Isolation: These cuts will reduce participants’ worlds, making their lives smaller and more isolated. Eliminating community access cuts out the very activities that foster joy, friendships, and independence and will result in an increase in Mental Health issues, requiring other types of care.

• Lack of Meaningful Consultation: This framework is being advanced without genuine co-design or thorough consultation with the very participants, carers, and frontline service providers who will bear the consequences.

• Undermining Early Intervention: Reducing early intervention supports is a short-sighted approach that will drastically increase long-term costs. Unmet needs do not disappear; they simply manifest later as crises in health, mental health, emergency departments, and the justice system. Furthermore, state governments have explicitly indicated they cannot replicate individualised NDIS services.

• Automated and AI Decision-Making: The implementation of automated algorithms to assess and monitor plans is highly alarming. Human functional needs cannot be calculated by a computer program. We saw the devastating psychological and

Submission 2214

systemic harm caused by Robodebt when automated government systems lack human empathy and oversight.

• Shift Towards a Welfare Model: These changes signal a regression shift in how the government views the NDIS—treatiing it like a capped income-support or welfare scheme rather than a human rights based support system designed to foster community inclusion and independent living.

The NDIS was designed to ensure equity and dignity for Australians with a disability. I urge the Committee to reject changes that compromise these fundamental values and place undue hardship on participants and their families.

Thank you for considering my submission.

Kind regards,