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Submission SUB-B8S2-002308 (Kira)

Submission reference
SUB-B8S2-002308
Individual's name
Kira
Submission type
10 areas for improvement
How can we empower you through the planning process?

Funding should be available and easy to access to enable anyone who cannot afford it to access assessments to help them show if they are eligible for the NDIS.

The NDIS should study those rejected from the scheme? How many go on to get access granted? How many when they have access to proper assessment actually do meet the criteria. Most people I am aware of who have been rejected either go on to get better assessments and get access or are likely eligible but cannot find funding to get the assessments they need.

The application process should consider the impacts on those applying. Someone applying is likely to already be very desperate. Getting rejected when you are desperate for help is a huge setback for people. The NDIS should consider it's duty of care in ensuring that those rejected actually do get access to proper services and/or help getting properly assessed rather than just a bureaucratic rejection letter.

The process should actually involve human beings. The current process is really dehumanising. Applying for the NDIS and disclosing how badly your disability impacts you is incredibly vulnerable. The way it goes into a bureaucratic black box that eventually pops out a letter that could have been written by a robot is not a proper response to what people go through to apply.

The NDIS should consider alternative application pathways for people from disadvantaged backgrounds and communities that are appropriate for those communities. It is often hard to translate things that are assumed knowledge in our community into something an NDIS person with no real experience with my community would understand.

What is the best way to provide supports for those not in the NDIS?

Things like some degree of basic assistance with looking after your house, services to help people connect to their community, help with shopping and food prep, transport, are all things that could be available in the community.

Services should be available to NDIS participants too. While I do need some specialised services for some areas, there are others that I don't need something as personalised and I could easily sign up for a community service. This could potentially be delivered more cheaply and has the potential to save the government money

What is the best way to support children with disability… and those with emerging developmental concerns?

The focus on funding only the children and the expectations around 'parental responsibilities' is a significant hindrance. Many of the parents I know who have kids on the NDIS have disabilities themselves but may not be severely impacted enough to qualify for the NDIS. NDIS plans for children need to look at the broader ecosystem that child exists in - parents, extended family, and community. Often I see children who struggle in part because their parent may not have the support they need with their disability and providing the parent with support would then allow them to support their child in ways that are better for the kid and more cost-effective for the government.

In regional areas, the lack of services is often the problem. Every year parents are asked about underspend and indicate that it is due to lack of provider availability. Rather than actually helping, LACs just shrug their shoulders and put the plan in for a rollover. If children on the NDIS cannot access the services they need then the NDIS is not actually doing it's job.

How can the market be better designed, structured and supported?

The market does not give providers any sort of long-term job security. This means that providers don't tend to stick around, resulting in a constant need to find new ones, which is exhausting.

The lead time to get access to a support worker for a one-off service means that they aren't as helpful as they could be. I often struggle with finding myself unexpectedly in situations where I need support. That doesn't fit with the weekly work schedule that providers want for an ongoing arrangement. Finding people last minute isn't great either because it takes a while for me to be comfortable around someone, so I often end up not accessing support when I need it.

As a trans person, I find it incredibly difficult to find providers who are appropriately trans-aware in order to help me. The NDIS training on the LGBTIQA+ community has actually made things worse - it gives some basic awareness but doesn't actually teach people what they need to know to work with me. But because everyone has done it now, when I go to look for providers it has actually made it more difficult to tell which ones really do know how to work with me. Finding competent providers ends up being very time-consuming and I've had more than one experience where I had to deal with a potential provider behaving in ways that I found quite distressful despite having supposedly done the training.

I'd love for the NDIS to help support organisations that actually do have culturally competent providers and help ensure that those providers stick around by making sure that they have access to job security and training and whatever else incentives they need to want to continue to do the work. When I do find good providers, I often have to pay above the NDIS rates (I'm self-managed) for them because they are in such demand. I shouldn't have to sacrifice additional funding from my plan just because I'm trans. If the market can't actually deliver trans-friendly providers at the NDIS rate then either I need to have additional funding or the NDIS needs to subsidise those workers in another way

I live in regional NSW and service availability is really variable from town to town. I've been told that I shouldn't expect to be able to access an OT in anything approaching a timely fashion because most of them moved away.

How would you build better outcomes or goals into your plan?

Long term planning requires the scheme to be reliable long term. Having to fight for what I need every time I have a review means that I don't really know what I can rely on from the NDIS when I make long term plans.

As a trans person living in a regional area, STA funding is really helpful for being able to connect with friends, family and community. However the lack of transport funding accompanying that limits how useable that is. My partner is not able to drive long distance due to his disability but can't get STA funding for flights so that he can connect to his friends in other cities.

What does good service from someone helping you navigate the NDIS look like?

Navigating the NDIS often seems like a part-time job. As someone who has experienced significant social isolation, I need access to someone to advocate for me when I'm unable to do that. As a trans immigrant to Australia, I need access to advice on how to navigate the system to find providers who understand me. This includes support coordinators. I've found that most of my support coordinators have no understanding of trans stuff and when I try to talk about how what I need for my disability intersects with my being trans, their eyes just glaze over, and then they go do what they were going to do anyway. I don't really have the ability or energy to find services for myself but I've resorted to having to do that at times because I can't find someone who actually gets what I need.

There also needs to be easier ways to justify spending on some items. I often get told to get an OT letter to justify particular things as someone who is self-managed. But there is a lack of OTs in my area and my plan doesn't have enough funding for ongoing OT visits, so that can take months when sometimes I just need something now. As a result, I sometimes feel like I'm in limbo where I have to go ahead and get something I need while worrying that if I get audited, I'll get challenged on the decision.

People who are plan managed or NDIA managed have access to someone who is at least supposed to be informed on what you can spend money on. But when you're self-managed you don't have a resource you can ask questions of. There really needs to be a service like that to assist people who are self managed in making decisions.

How should housing and living options be improved to build a good life?

My disability interacts really significantly with my housing needs. I spend a lot more on housing than my peers because of what I need. If my housing doesn't work for me it can be really destabilising and impact my ability to work. I'm lucky enough to make enough money to be able to pay this cost on my own. But it means that I haven't been able to save for a housing deposit. I also end up often having to choose to live on my own because housing options that work for me that also allow me to live with other people are pretty rare. This has led to me being more socially isolated. I feel pretty trapped by this - I have to keep working to afford housing that meets my accessibility needs, but if anything happens to disrupt then I'm worried I won't be able to work and may get stuck in a cycle where the inablity to afford housing I need means I am unable to work long term. The stress of this has a big impact on me and often limits my capacity.

I would really like to see something that acknowledges that people with disabilities (including those of us with non-physical disabilities) often have to spend more on housing and helps us to save for and be able to afford more permanent/sustainable options. A program where I could buy a place without needing to have saved for a deposit would enable me to access stability and also enable me to keep working long term, which is likely to be highly cost-effective for the government

How should the safeguarding system be improved for a better NDIS?

When someone gets onto a plan or doesn't have a support coordinator, services need to be available to ensure that they actually do get one. This shouldn't just be a follow-up but someone actually to find a support coordinator that matches what they need. And it should include somewhere to go for help if the support coordination isn't working. I've often stayed with substandard support coordinators because I didn't have the energy to go find another one. That then had flow on impacts as the support coordinator wasn't able to get me what I needed.

I would love to have regular check ins about my plan from someone other than a support coordinator. Support coordinators feel like they are watching the clock for every second of time they can bill you and it makes the conversation feel really unnatural. Being able to check in with someone who can actually interact with you like a human being and will follow through on whatever comes up would be really helpful.

Is there anything else that you would like to tell the NDIS Review?

There has been some discussion of requiring all support workers to have a level of training or registration. While I understand that this may be needed for certain duties, I strongly oppose applying this requirement across the board. As a trans immigrant I find it incredibly difficult to find support workers who understand me and can support me in the way that I need. As a result, I often need to rely on support workers from within my own community. The fact that they are currently only required to have an ABN makes this really easy. Additional training or registration requirements would likely make this impossible and result in my not being able to find the services I need.

As an example: I struggle with finding clothing that works for me due to my disability and the resultant bullying I experienced regarding the clothing I wore when I was growing up. I'm not able to just have anyone buy clothing for me. As a trans person I need someone who is able to be creative and also understands the nuances and meanings of clothing within the LGBTIQA+ community. I tried for months to find this. My support coordinator basically looked at me as if I'd sprouted horns when I tried to explain the nuances of what I was looking for and was unable to help. Finally, through a friend, I was able to find someone who does costumes for a major theatre company in Sydney who had some spare time and was willing to help. She has been a fantastic resource and has helped me find clothing I feel much more comfortable in. This has made me more confident in engaging with the community and also been helpful for work. If she had been subject to any registration or training requirements it likely would have been too much for her and she would have declined, and I would have continued to struggle to find someone. It is highly important that the NDIS continues to enable participants to have flexibility in who they use as support workers so those from different backgrounds can find support that is culturally appropriate.