National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 133

Submission to the review of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 – 10 July 2024.

I’m writing to you to express my grave concerns regarding the NDIS Amendment Bill.

I am the mother of an Autistic 15 year old boy who is a NDIS participant. I am a person with disability who is not a NDIS participant and a single parent who works part-time because I am my son’s sole carer. My son has six other co-occurring disabilities. He is twice exceptional and is a passionate artist and environmental volunteer. He wants to finish high school and go to university. He hopes to pursue a career in environmental science and as a writer so that he can contribute to the country that he loves. He will need substantial disability supports in order to do so. Without the right individualised NDIS supports, his future social and economic participation is at risk.

I’m so very grateful for the existence of the NDIS as it has enabled my son to receive supports that he needs including occupational therapy, capacity building psychology, and speech therapy. The access to NDIS support has substantially improved his quality of life. Capacity building supports such as these have given him skills that have allowed him to participate more successfully at school, and in community activities such as Scouting and environmental volunteering.

The NDIS, as originally conceived, has been lifesaving not only for him, but for so many Australians.

I am very concerned that the proposed changes in this Bill are extremely detrimental to participants. I worry as a result of this Bill people with disability will lose NDIS access, available supports, and participant rights. They will lose choice and control, and the right to access the supports that work best for them.

Critical concerns include:

• Co-design is not guaranteed: ‘Ministerial consideration’ of co-design principles, without it being a legal requirement is tokenistic, and at worst risks being dehumanising and ableist. It goes against the fundamental principle of ‘nothing about us without us’. Guaranteed co-design and co- implementation of the NDIS must be a core principle embedded in legislation to ensure that decisions fully reflect the needs of participants like my son. There is substantial evidence that learning from the lived experience of people with disability and their carers is essential to effective policy and program implementation. Without this, the risk of systemic failure is high.
• No Whole-of-Person Approach: Ensuring that the NDIS legislation fully accounts for people with multiple and interrelated disabilities is essential. Disadvantage is cumulative. Failure to embed a whole-of-person approach risks inadequate support that is not tailored to the participant’s situation and needs. Without a whole-of-person approach people cannot access supports effectively.
• Unclear Appeal Rights: The NDIS must take a person centred approach. The right to appeal decisions and a clear

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

Submission 133

An accessible process for doing so is critical. Under the proposed Bill it is very unclear how a participant can challenge a needs assessment or request changes to a plan that does not meet their actual needs. Clear appeal rights and effective appeal processes are critical to participant safety and wellbeing. Inadequate supports can be life threatening for some participants.

• Mandatory Assessments: The proposed changes will mean that participants will need to undergo mandatory medical assessments at NDIA request. My son’s disability diagnoses involved waitlists of 18 months or more to access qualified specialists. I am very concerned that expert specialist medical and allied health advice from providers who have supported the person with disability for years will be outweighed by an assessment conducted by an unqualified assessor who meets the participant for only an hour or two. In complex cases like my son, an assessor is unlikely to be able to fully understand their needs in such a short timeframe. Additional assessments risk being expensive and difficult to obtain, and delaying or complicating access to necessary supports.
• Limits on Funding Flexibility: Disability support is not one size fits all. People with the same disabilities have very different support needs. To have quality of life participants need to be able to use funding flexibly and to have choice and control over the supports that they access. Lack of flexibility will mean that people are unable to access the right support at the right time. Participants and carers should have control over decisions that affect their daily life.
• New Enforcement Powers: As set out, the Bill gives the NDIA new powers to change a Participant’s plan management and to raise debts for what they consider misuse, potentially impacting people with disability and their family’s financial stability and their access to needed supports. The proposed approach does not clearly demonstrate that it is based on natural justice principles. Both the Royal Commission into Robodebt and the Disability Royal Commission have demonstrated what can happen to vulnerable people when adequate systemic safeguards are not put in place. Any enforcement power must be accompanied by fair and transparent processes and strong protections for people with disability and their families, including improved access to disability advocacy and financial education and counselling.

Please - Do better. Do better for people like my son. Do better for a fairer and more inclusive Australia. Ensure that the NDIS refresh is based on the social model of disability, and that it:

• centres the lived experience of the disability community and engages in meaningful co- design and co-implementation
• takes a whole-of-person approach and considers family factors
• considers the needs of the person in the context of their personal goals, family and community
• has clear and easy to follow appeals processes so that problems can be fixed quickly
• centres expert clinical opinions from medical, allied health and disability supports who actually work with the participant when developing NDIS plans, not the opinions of unqualified assessors who are not familiar with the person’s needs
• supports quality of life through choice and control and allows flexible use of funds to put the correct supports in place
• has fair and transparent processes and strong protections for the most vulnerable.

Thank you very much for taking the time to consider this submission. It is very much appreciated.