National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021
Submission 76
7 November, 2021
S. Pallavicini
Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600
Dear Committee,
Re: Submission National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021
My beautiful 4-year-old granddaughter was born with a rare genetic disorder. She has severe intellectual and physical disabilities. She suffers on-going seizures. She cannot take food or drink through the mouth. She feeds through a tube. It is heartbreaking to watch a four-year-old feed through a tube and then violently vomit it all back up. She will be wheelchair bound for life. She will never experience what you and I take for granted. Her treating doctors have advised she will have a life expectancy somewhere between 9 and 30 years of age.
It may be hard for us to understand but she needs 24/7/365 care for life. She requires constant support. Her parents value the time out that support workers provide when they care for her. Although her parents tire of the constant bureaucracy and challenge, over what I consider to be legitimate support services and related costs, they value the NDIS.
My granddaughter is one of many in our society whom deserve to be treated with respect, dignity and as equal to those of us whom do not suffer disability. They deserve to have a full a life experience as you and I.
With that in mind I have concerns over the proposed legislative changes:
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The legislation allows plans to be varied on the CEO’s own initiative, without request, consultation, or consent from the participant. I have no doubt this will be a delegable power resulting in NDIA staff making decisions that lead to adverse outcomes for participants. Such powers are not in keeping with what I believe should be the NDIS aims: accessible, secure and supportive.
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The legislation should be drafted to ensure that participants, or in the case of her parents whom must act on her behalf, incur no adverse outcome in respect of their right to self manage payment methods. I understand the legislation includes a provision that payment can be made ‘to the person determined by the CEO’. Any change that deliberately or inadvertently intended to remove the ability for self-managed participants to continue their existing payment method is not in the participant’s interest.
National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021
Submission 76
- Every decision made by an NDIA reviewer must be accompanied by a statement of reasons. Without this the legislation is placing an unreasonable and unwarranted administrative burden on participants and their carer’s.
Finally, I would make the following comment. Any revision to the legislation should have one simple aim - to make and her parent’s life easy and secure. I have constant conversations with her parents about on-going requests for funding, plan reviews and so on. This has to be simplified. Her parents should not have to spend so much time worrying about battling the system or losing funding. I call on this committee to put participants and carers first. is not an economy, she is not a measure of GDP, she is not a budget impost – she is a human. She deserves equality and quality of life.
Thank you for considering my submission.
Yours sincerely,
Simon Pallavicini