Submission 1760

I am a nominee for an adult daughter for whom I have been advocate and primary support since her ability to live independently declined. I am in an older age group, with health considerations of my own, and have great concerns for her well-being in the future.

As I age, my capacity to provide the support that my daughter needs, has declined. My husband has also had medical events that have required more from me than previously.

My daughter has a complex suite of neurological, developmental and medical conditions that interact and cause fluctuations of her support needs, due to her varying capacity.

For her future, my daughter needs assistance

• to develop/strengthen skills for everyday living,
• to participate/go out in the community,
• to manage appointments,
• to have an advocate present for health and other life matters,
• to ensure her living environment is maintained and healthy.

She also needs regular input

• to build her physical strength,
• to promote emotional resilience,
• to boost her cognitive function
• and to maintain a balanced perspective on life.

The input provided by therapists and other professionals, funded by NDIS, has been invaluable!

When she has what she needs, she learns new skills, learns how to use tools to manage better and gains confidence in herself. Unfortunately, progress regresses when her multiple impairments interact or her needs are not being met. And this would be the case if her NDIS funding and support was withdrawn.

My daughter hopes to return to some form of work in the future and to be able to live a life with a degree of independence.

For this to happen, she needs the support to build capacity, to integrate in society and the community, and to continue building daily living skills. I am struggling to meet her support needs as I get older.

I am in total agreement that the NDIS needs to be sustainable long term.

Changes are needed: this imposes the responsibility of getting the Bill in the best possible form, to ensure the least trauma to people with disability, to nominees/carers, and to workers involved. It must also provide very clear meaning and direction to decision makers as to the extent and/or limitation of their authority.

Consultation and cooperation are paramount!

Submission 1760

My comments on the Bill

Suggested changes

A The current Bill proposes giving ➢ Please include mandatory consultation unprecedented authority to the Minister to with the disability community for any vary funding for an individual or cohort, proposed changes without consultation with Parliament or any ➢ Please include oversight of proposed other body that has vested interest in a fair changes, with checks and balances to and equitable system to assist people with ensure both practical and ethical disability. This is alarming. parameters are met.

B Following this, participants who will be ➢ Please retain the participants’ right to affected by any such changes need the request review. opportunity to question the changes where
The changes will be detrimental to their well- bearing. Safeguards are needed where decisions
 are harmful  untimely  inappropriate

C In the case of being unable to contact a ➢ Include mandatory evidence of methods of participant, their plan can be suspended or attempted contact and across what time revoked without them knowing: frame, relevant to the participants There are so many valid reasons why a requested contact methods. participant cannot respond to a request ➢ Make provision for excluded immediately and there is no provision in the circumstances beyond participant control. Bill that recognizes circumstances beyond the ➢ Specify only suspension of plan as penalty, participants’ control. and apply after acknowledged notification to the participant of the intent to suspend. D Many people with disability are living with a ➢ Retain the “whole of person” approach, as complex interaction of possible physical, of the 2024 amendments. sensory, cognitive and psychosocial issues. Where this is the case, the need for support
cannot be realistically determined by using a
single impairment/direct need criterion.
E Applicants need to understand clearly what is ➢ Provide readily available information on required to be eligible and how this will be eligibility rules, including ‘easy to be determined. understand’ versions. Currently, the tool to be used to determine ➢ Delay voting on an eligibility tool until eligibility as not been designed, tested and thorough evaluation of such tool has evaluated. occurred.

Submission 1760

F An unscheduled reassessment is requested ➢ Reduce the decision time. Retain the current 21 days with the safeguard of “deemed decision”. Is huge. This is too long.

There is no reassessment path in an emergency situation. Where a situation arises ➢ Include a statutory fast-track emergency pathway with reduced decision time. (14 days?) that places a person in a dire position, like loss of housing or safety threat, there needs to be quick access to reassessment and decision response

Informal support changes are only considered if they are “unanticipated”. Health decline, loss of mental or physical capacity, end of life of aging parents are very much ‘anticipated’. This would reduce informal support, thereby increasing the need for support.

G There are other concerns that I hold in relation ➢ Make safeguards legally enforceable in relation to Automatic Decision-making to Automatic Decision-making. Legally enforceable safeguards need to be in place ➢ Provide access to review by a human before any adverse ADM decision takes effect.

H NDIS legislation needs to:- - Mandate release of data across all components of the process at specified periods. - Mandate an independent review process following the trial of new legislation which leads to revision of legislation, in consultation with all parties.

Comments based on shared experiences

Uncertainty is an impact on participants and all people working with them to provide what they need. This can lead to use of funds that turn out to be unintentional ‘misuse’. This is usually the result of misunderstanding, incorrect verbal advice from NDIS, LAC, and inability to find the answer within resources.  Provide a statutory pathway to obtain a binding ruling on use of funding that provides certainty before purchasing or making a claim. This is usually the result of misunderstanding, incorrect verbal advice from NDIS, LAC, and inability to find the answer within resources.  Provide a review process if the Agency cancels a claim after the money is spent.  Mandate ‘easy to read’ documents be freely and easily available in all areas of NDIS processes.

I apologize for any errors in my understanding of the bill. Thank you for considering this submission Sincerely,