Submission 1624

Submission on the NDIS Amendment Bill

My name is . I am a young adult with level 2 autism and additional physical disabilities. I work 4-8 hours a week doing admin work for a family on NDIS. I was studying to be an allied health professional, but have had to pause my studies this • year due to my disabilities flaring.

I have serious concerns about this bill.

Autism and the NDIS

When I was 18, I started receiving NDIS support for my autism. Having support workers and occupational therapy and psychology supports enabled me to navigate the transition from high school to working to university, which was very difficult for me. It helped me learn ways that I could balance things and cope with change.

After a pause in support, I went through severe burnout and needed to drop down from four university subjects to one university subject. I was also hospitalised twice for suicide attempts in that semester because I was so overwhelmed by my autistic burnout and I couldn’t see a way out.

With supports, I was able to get myself back to working again and was able to finish that year of university even if I was just doing one subject.

When I was nineteen, my NDIS supports made the transition from living with my parents to living more independently with a roommate actually feasible for me. Some tasks were difficult for me because of my severe sensory sensitivities, such as:

• cooking in the kitchen
• washing dishes
• emptying bins etc.

Working with my OT for finding strategies, my psychologist for managing meltdowns and extreme emotions in a way that was safe for everyone, and my support workers to help me practise and implement the strategies. I was slowly able to increase my skills in the kitchen and my ability to do the dishes. The bins, however, remained something that was really distressing for me because of my low tolerance for the smell. I was still needing to receive support from support workers because even with as much help as you can receive, autism is still disabling and there were some things I was just not able to do. Going new places was something that was hard for

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me and I didn’t do until I had support workers. They helped me practise going there a couple of times with somebody and then after that I felt confident enough to go by myself. Medical appointments with new people were also very scary so I got support with that as well to help me be able to go.

I understand that some support for autistic people is planned to be moved off of the NDIS. I have concerns about how that will be done. There are some things that are really important that would need to be maintained:

• Being able to choose who is supporting you
• Enough funding for regular supports to actually benefit from it
• Particularly for autistic people, the ability for these supports to be ongoing long term

Change can be incredibly distressing for autistic people and it can be hard to trust new people. The ability to choose those who they are comfortable with and for the supports to continue long term is the only way for it to be efficient, effective, and actually support autistic people where they need it.

It’s really scary for people on the NDIS right now with all of the uncertainty about what it is going to look like in the future. These supports could be moved so that they are taken care of by state governments but it will end up costing a similar amount. It’s just moving the money around, similarly to how reducing people’s funding can often just mean they spend more time in hospital and it’s even more expensive for Medicare than it would be for the NDIS. It just feels like the government is not working together and is viewing itself too much as these small little groups.

Additional disabilities and NDIS access

A couple years ago, after my third COVID-19 infection, I developed significant physical disabilities. I was experiencing:

• seizures
• periodic paralysis
• trouble walking
• light sensitivity
• extreme fatigue
• poor balance
• frequent joint dislocations
• muscle weakness
• severe fatigue and post-exertional malaise

I am now unable to stand for longer than two minutes. I can walk unassisted for about 5 to 10 m and for anything longer than about 100 m requires a wheelchair with power assist.

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I need to spend most of my time lying down as sitting up for extended times (over an hour) makes me feel dizzy, lightheaded, fatigued, and will give me a headache.

There are no mainstream supports for me. A chronic health care plan will discount five allied health sessions a year. If I was to only receive that many appointments, I would continue to get significantly worse. I rely on support workers to assist me with grocery shopping as I cannot lift things of even a moderate weight and cannot reach things when I’m using my wheelchair. I’m unable to prepare food for myself. If I did spend the energy to prepare food for myself, I would be unable to move, even to go to the bathroom for many hours afterwards. I would rather maintain my dignity by not soiling myself in my bed or on the floor and instead choose to not eat.

I am thankful for having already been receiving support work assistance when my disability started to progress. Support workers, doing cleaning and meal prep from my autism NDIS plan, has been the only way I have been able to stay alive really. I have felt so frustrated and hopeless about the fact that there are no mainstream supports that I have tried to kill myself on multiple occasions and have almost succeeded. I don’t want to be reliant on NDS but this is the only option there is. When the NDIS began, all other mainstream supports closed. Now people are surprised that the number of people on NDIS has increased significantly and that’s because people have no other option.

Eligibility Communication and administrative requirements

I have heard of many other autistic people who are on the NDIS for their autism because that is the only way they could get accepted when so many of their other physical disabilities were rejected on unreasonable grounds. Such as claiming a genetic condition is temporary, which is not true or possible in most circumstances.

I’ve been in the process of gathering evidence to apply to have my physical disabilities added to my NDIS plan for about nine months now. It’s taking a long time, partially because of my energy constraints and partially because of financial constraints. Last year alone I spent $10,000 on my disability, paying for allied health appointments and necessary mobility equipment. This drained a lot of my savings that I had from when I was working more frequently.

What is frustrating is that I know that on my first application I’m likely to be denied anyway. People with my disabilities tend to be rejected by NDIS until we begin mediation for the tribunal. Then they are quickly accepted as they finally understand that they have wrongly rejected a person with a severe disability.

I am scared that if the option to go to an external tribunal is removed, as I understand to be the case with this bill, then many decisions that are currently upheld by the NDIS will not be

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able to be questioned externally. No company or government agency should be able to make decisions that impact people’s lives so significantly without any external oversight. Tribunal is the last resort. Nobody would want to go there if it’s not necessary but unfortunately a lot of the time it is. If NDIS wants to reduce the amount of money it’s spending on lawyers fighting disabled people who just want to be alive, then maybe they should re-evaluate their internal review process, which so often upholds incorrect decisions that are later overturned.

I am concerned that, as I understand it, in this bill if participants are not able to provide new evidence or respond within certain frameworks of time, then the supports will be stopped. Some reports take a long time for clinicians to write or you need to be on a wait list especially if you are only given short notice. Otherwise there are times when I personally am so unwell and my cognition is affected to where I cannot think about NDIS, let alone respond in a way, knowing that the consequences could significantly impact my support if I say something wrong.

So much money is spent on reports that don’t even seem to be read.

Loss of supports

I don’t think it should be allowed for any one minister or small group of people to change a whole group of people’s supports without looking at people individually. Being able to say we’re going to reduce everyone’s social and community funding by 10% is like saying we’re going to reduce the frequency of how often every person in the aged care home is showered. They should be able to do it themselves or they don’t need it. People with disability should be allowed to leave the house. So many capacity-building activities are practised in these times with social and community access. If somebody has an acquired brain injury and you’re trying to work on their handling of money and speech, going to a cafe and then practising ordering is a great way to do that. The NDIS funds are not being used to pay for the coffee. It’s being used for the experience to practise and to do so safely.

When I started getting unwell, I had to quit my retail job and I was thankful that over time I was able to find work in the NDIS space. I receive assistance with the things I need help with from support workers in my own home and life. That allows me to support others with things that I am good at and still able to do. I work with people who have similar disabilities to me but are on the very severe end of the spectrum. I am only able to work because I work either from home, lying down, or at their home, which is already very adapted to my own disabilities. Because of my lived experience with similar symptoms, I am able to better understand what it is like for the participant when I am communicating with staff on the best ways to do things or setting up things in the home.

I would not be able to work without NDIS. If the support that I receive in my home was reduced, the energy that I would need to spend on that would mean that I could not work at all and that I would progressively get more sick until I needed full-time care in a nursing home, hospital, or SIL. Working for this family provides a flexible and well-adapted job that I could not find almost anywhere else. By providing support to me and this family, you are investing in me, not requiring as many DSP payments and preventing the amount of

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support I would need if my condition was to continue to get worse due to not having support.

Registering Some of my best and favourite support workers are those who had not registered with the NDIS and do not necessarily have a certificate III or IV in disability support. The most trouble I have had with support workers is when they are through a company that is registered. I don’t think it is fair to require every worker to have a Cert 3 or Cert 4 in individual support unless they were doing self-care or manual handling activities. The good thing about support workers is that they all come with their own wealth of experience in all different things, not just disability. I don’t think that workers who have five years of experience now should have to go back to get a Cert 3 or 4 to continue their work. They’ve learnt enough as a worker already. I think that NDIS should make it easier to report people who are not doing the right thing. People with communication challenges, intellectual disabilities, or who are reliant on the very people who are abusing them are not able to report people. Sale houses are some of the most problematic providers I have met. They are the ones taking advantage of the system not participants. Sale houses should be disbanded. They were never meant to be a part of NDIS in the first place.

Problems I like the idea that the list of automatically approved diagnoses is going to change to a functional assessment but I’m concerned about who will be doing the functional assessment. It should have to be a trained allied health professional not anyone just tained in the programme.

It is also important to remember that the disability that people have listed on there as their main disability may not be what is actually affecting them the most. It is just incredibly difficult to get access to NDIS without already having support when you are disabled.

I was going to write a conclusion but I’m so incredibly exhausted from writing this, even using voice-to-text for the whole thing. I am going to go lie in the dark for a few hours now. Please remember that we are people and we are important too. Hopefully in the future, me having access to support will mean that I will be able to use my degree. A friend of mine had their support significantly reduced and they went from being able to work full time as an occupational therapist to now only one day a week. That was all because the four or five hours of support work that they needed to be able to live with dignity was taken away and now they receive none. NDIS increases the quality of life for those who work for it and for those who receive the support. Instead of reducing the amount of hours that each participant receives, perhaps you could change the maximum price for some of the things that are ridiculously expensive. Or focus on regulating how much consumables companies are allowed to

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charge. The NDIS price gouging also means that it’s completely inaccessible for those not on the scheme.