To Committee Secretary

Senate Standing Committees on Community Affairs

I am an NDI participant, diagnosed with autism level 2 and CPTSD. I write today in response to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (‘Bill’). As a participant and member of the disabled community which this bill is designed to help, I have a great deal of fear and concern in regards to the current drafting of the bill. I believe the bill does not provide enough protections to the right to choice and control, the balance of power within the bill is skewed too far towards government and the bill requires legislated codesign.

The Government has made a commitment to develop delegated legislation following ‘genuine consultation with the disability community’, this commitment should be reflected in the NDIS Act. The bill currently doesn’t attach a lot of consequences to failure to consult, and co-design must be legislated into the bill. For example, in Section 32K(2) and 32L(8), I suggest an amendment to adapt process of approving these two legislative instruments to include code-sign and evaluation, so when these instruments are tabled, it is required to table alongside these instruments statements and information from disability led advocacy organizations and individual disability rights advocates. These are these two huge powers within the bill and it is vital to include co-design in the making of these two powers from those with lived experience.

At present, a major concern within the disabled community in regard to the bill is lack of protection around choice and control, a key principle of the NDIIS. For example, in section 10. Section 10(a) is a lot of words while at the same time being very unclear and too restrictive, this section is a central theme in the bill and it needs to be gotten right. Section 10(a) needs to be much clearer and suitable for a broad range of disabilities, otherwise it risks participants losing their right to choice and control. It is currently very unclear for example if things like social and community participation and access to AT not related to mobility are included in this section or even if things like assistance with personal hygiene, showing and toileting are included. As someone who is reliant on access to funding for social and community participation this is particularly concerning to me. Prior to gaining access to NDIS I had not had any friends or been part of any social groups for over 5 years, this led to severe deterioration in my mental health leading to loss of work and reduced ability to do self care activities. NDIS funding for social and community participation has allowed me to start forming friendships volunteering within my community and joining social groups, leading to massive improvement in my mental health overall wellbeing and ability to participate in economy through working.

Section 10 (a) needs to be clear and easy for participants to understand, I suggest amending this section to clearly include at least: assistance with daily living and self-care; assistance with social and community participation; assistive technology consumables and home modifications not related to mobility.

In addition regarding section 10(a), If states are going to take over roles the NDIs previously had then what they are responsible for need to be established co-designed tested and implemented BEFORE changes are made in what ndis provides. I remember in primary school being last to be picked for teams in a game of football, the two team captains arguing ‘you take her no you take her’, this situation has potential to have similar feeling. I don’t want feel like hot potato with responsibility for supports that allow me good health and well-being passed argued between federal state.

Additionally, The Bill says until these Rules written the NDI will use Applied Principles Tables Support (‘APTOS’) decide what funded by the NDIIS and left State Territory Governments provide subclause7IB(2). APTOS principles were never intended inserted into legislation, some places very unclear difficult apply This can leave both the NDIS and State/Territory governments believing they’re not responsible

providing a type of support, with participants not receiving support they need. APTOS principles are not fit for purpose and should not be used as an interim measure. The Rules should be developed and negotiated between Commonwealth and State and Territory Governments before changes are made to what supports the NDIS will fund.

In regards to 10 (b), when creating a ‘white list’, I suggest this should be things either every participant or participant with a certain disability or disability related impairment can get up to a certain dollar amount without needing OT or similar recommendations (eg, access to a support worker for daily living + social and community participation, access to cleaning services, access to and occupational therapist. And/or access to AAC devices for everyone who is non-verbal as a direct result of their disability, access to a wheelchair for everyone who is a quadriplegic, access to noise cancelling headphones and speech pathology for everyone with an autism diagnosis etc). This would save on funding required on OT reports and recommendations for services and items that are generally required for most people with disabilities and those with specific disabilities.

In regards to sections 10 ( c) I suggest an amendment to replace this section with a statement similar to ‘any other support requires (set amount of ie 2 or 3) recommendations from health professionals ie OT, phycologist, speech therapist and must be directly related to a person’s disability and disability related impairments’.

Any kind of restrictive ‘black list’ will mean individuals will be forced to go without supports; creativity will be stifled; choice and control will be reduced. These amendments also have the potential to be in conflict with NDIA objectives - (d) provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme; and (e) enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports and (g) promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the community.

Disabilities are far too varied and dynamic, even within the same diagnosis, to be placing any strict restrictions on what counts as a disability related support and what does not, this is simply going to cause people to miss out on vital supports. For example, I have a pair of noise cancelling headphones funded through NDIS, these headphones allow me to be able to do my grocery shopping and errands independently, without them I would require a support worker an extra 2 hours each week to assist me with these tasks as the noise of the shops becomes overwhelming and I either need a support worker or assistive technology to help with emotional regulation. These headphones cost $260 and will likely last me well over a year. Two hours with a support worker would cost $130, totalling $6760 over the year.

These headphones could easily be considered a ‘black list’ item, lots of non-disabled people use noise cancelling headphones. But for me, they are specially related to my disability and it’s impairments, The most cost effective support available and allow me the choice and control to decide when I go do my shopping and errands rather than it being reliant on when my support worker can be there. There are countless stories within the disabled community of an ‘every day’ item ie air-con, food choopers, robot vacuum or even acrylic nails, being directly related to someone’s disability, providing the best improvement in their functional capacity and wellbeing and the most cost effective support available over specific disability related supports (I would particularly like to share the story in relation to the acrylic nails, this person had a nerve related disorder that meant whenever anything touched her fingertips she would have unbearable, burning pain down her arms. All prosthetics, all disability specific items she found pressed on her fingers causing pain, so she uses acrylic nails to type without pain, this is cheaper annually then speech to text technology and she is 10% more productive using the nails than speech to text, these are currently included in her plan but under the new bill’s rules it would appear these would be banned.

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This section again, reminds me of being back in primary school, when the whole class was ‘punished’ because of the actions or one or two kids, but in this case those who would end up missing out are among the most vulnerable in our society, and the result would mean a massive decline in people with -disabilities’ health and wellbeing. By far the majority of participants use their funding in reasonable, nneeded ways that are directly related to their disabilities, even on the occasions it may not seem the -case from someone without experience of that particular disability. On the rare occasion someone is misusing their funding this needs to be dealt with individually, rather than trying to create a ‘black -list’ which is just going to stop people from having their basic needs met and having their right to choice and control.

At current, the balance of power within the bill is skewed to far towards government and not enough power is given to people with disabilities. While it may not be the intention, there are powers currently within the bill which could easily be mis-used, again impacting people with disabilities right to choice and control. There are multiple powers within the bill that are far too broad, and there is a need to amend the bill to include more structure and circumstance as to when those powers can be use, otherwise they pose a huge risk to choice and control, such as in 32(h)(2). Also in sections 32F(6)-(7) and 43(2C), where the circumstances seem broader than is appropriate for what should be a ‘last resort’ power, as it would allow a single accidental instance of non-compliance to result in restrictions and controls. The NDIS can be quite difficult to understand, particularly for those new to the scheme, and it is in no way fair that a power can be legislated that could mean that a new participant who makes one honest mistake with a support they believed to be covered and was not loses their right to choice and control going forwards.

In relation to Section 32L(5), the bill does not currently ensure a participant has the opportunity to see the needs assessment report before it is ‘given to the CEO’. Section 32L(5) says ‘a report of the assessment must be prepared and given to the CEO as soon as practicable after the assessment is completed.’ The NDIS Review explicitly said the needs assessment report should be provided to the participant before it is finalised. This should be expressed in the legislation so it is clear that participants will be provided with the needs assessment report before it is given to the CEO.

It is also vital a participant be able to request a new need assessment where appropriate. Section 99 need an amendment to add ‘needs assessment’ to reviewable decisions, the bill does not provide a way for a participant to challenge an inappropriate needs assessment – and therefore to prevent an inadequate budget being set based on that needs assessment, this is a major issue with the Bill. If needs assessments are to be used as the basis for setting budgets, legislation must provide clear and straightforward rights for a participant to receive the needs assessment before it is finalised to ensure it accurately reflects their needs and circumstances, and to request a new needs assessment where appropriate.

Additionally, in regards to the needs assessment, section 32L (8)(b) should have an amendment that the needs assessments are conducted by health professionals who understand the participant’s disability, history and needs.

I realize this bill and the review were brought forth with budget and cost as a major concern. I truly believe the best way to manage budget and cost of the NDIS is to provide people with disabilities proper support in the first instant, provide good early intervention (where applicable) and to enable participants to use their lived experience to suggest and request creative solutions for their impairments, it is people with disabilities and the professional’s who work with them who know what will best help them, even when it may not seem like a disability support to the outside eye.

I am someone who has lived with a disability their whole life but I was not able to gain support until my mid-twenties as a result of late diagnosis. As a result I now require a lot more support than I would have had I received the correct support from a young age, and now have an additional

• disability, mental illness and a chronic health condition, all detracting from my quality of life and my
• ability to participate in the community and economy/workplace. I do not wish to see this happening to
• other people. It is so important this bill be gotten right and that people with disability are listened to
• and that co-design is legislated and enacted throughout as much of the process as possible.