Submission 317
I am currently an NDIS participant with access for autism. I also have a newly acquired, permanent physical disability and I am in the process of gathering evidence for a plan review to include it in my NDIS plan.
My disability has a huge impact on my life. Before I was on the NDIS, I struggled to maintain relationships or employment and to look after my basic needs. The supports I have received through NDIS allowed me to work almost full time, buy my own home, volunteer in the community, improve my social and family relationships, commence study for a career change that seemed more suited to my needs, and so much more.
Now, I am largely bed-bound. I can’t manage housework, cooking or even washing myself. I need to spend almost all day lying in a dark room to avoid further deterioration of my health and functional capacity. I use a walking frame to get around my house. I would need an electric wheelchair to safely go further than my house, but can’t afford one. Some areas of my house, including the bathroom, aren’t accessible with a walking frame or wheelchair, which increases my risk of falls.
I need a significant increase in my NDIS funding to be able to live safely and comfortably, but right now I’m scared that I will end up with a decrease in funding, even though my disability is what the government keeps saying the NDIS was designed for. If my funding is reduced, it’s highly likely that my functional capacity would decline even further. Without enough daily living supports, I could get to the point that I can no longer digest food. That sounds like a very painful way to die.
The government seems to be presenting the idea to the Australian public that people with disabilities are the enemy, that we are wasting tax-payer money and causing economic problems. I know a lot of disabled Australians. Almost none of them are rich. We don’t use our NDIS plans for extravagant outings. We’re just trying to get by. For many of us, our plans help us to live safely and hygienically, or at least more so than without our plans.
19 Subsection 48(3) Increasing the wait time from 21 to 90 days seems excessive, especially given the other proposals in the bill. Asking for a plan review is pretty terrifying. I need more funding. I have doctors and OTs writing letters about how more funding would improve my safety and that it is reasonable and necessary. However, I keep hearing stories of people who ask for a plan review and have good evidence for needing more supports but end up having their plans cut. I’m therefore very nervous about asking for a review, because cutting my funding could be very dangerous for my health. Having to wait 3 weeks seems reasonable, even if those three weeks would be agonising. Having to wait 3 months is just cruel. This is people’s lives we’re talking about.
34A Determination reducing funding for groups of supports This section is just as terrifying. The idea that a single individual, with (as far as I can tell) no educational background in health or disability, can decide that people don’t get reasonable and necessary supports is ludicrous. I appreciate that we need to manage the budget, but there are so many disabled people for whom a reduction in support means not just a reduction in quality of life and a violation of the UN charter
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on the rights of people with disabilities, but a serious risk of premature death. People have died from lack of supports. If funding is cut further, more people will die. I don’t want to be one of those people and I don’t wish that fate on anyone else.
I appreciate that clause 3 suggests that the minister might consider participant safety, but when this is followed by clause 5, that’s difficult to believe. The proposed amendment is that reasonable and necessary supports might not be funded because the minister decides they’re too expensive. What would happen if the minister’s grocery budget were cut arbitrarily by a percentage determined by disabled people (with no increased funds for eating out or however else the minister might acquire food). The minister might then be forced to live on rice for a while because there isn’t enough money for other reasonable and necessary food groups. I expect that the minister wouldn’t like this and it would come with health risks. Why then is it okay to do the equivalent to our NDIS plans? If the government needs more money, then please tax people and corporations who are wealthy rather than coming after vulnerable people. Or buy one fewer submarine. Or look for inefficiencies in systems across the country. Any of those would be better than writing a bill that explicitly allows the minister to remove reasonable and necessary supports from people with no other options.
The suggestion has been to cut social and community participation by 50%. That sounds like you’re just stopping disabled people from going out and having fun, so maybe the public will like it. The reality is that, for many, that funding means getting to essential medical appointments, or sending a support worker to collect groceries or pharmaceuticals that can’t easily be delivered. As you are hopefully aware, social and community participation is part of the core supports budget, which is used flexibly and also includes daily living. So if you cut our social and community participation, you are effectively cutting our daily living as well. That means cutting things like basic hygiene, feeding, medication management, reconnecting someone’s oxygen supply, etc. Many disabled people require 24/7 support, whether they’re going out or not. For those people a reduction in core support, whether we call it social and community participation or daily living, means a few hours on their own each day or week, which would put them in a very dangerous situation.
Section 50A(4)(b) the making of the new plan does not involve the making of any reviewable decision. This concerns me. I understand that creating the new plan in this context should be straightforward. However I also understand that mistakes happen and that there are several clauses about how the new plan is to be created, which would increase the likelihood of an administrative error. From talking to other participants, administrative errors don’t seem sufficiently uncommon for this clause to be acceptable. If a mistake is made, participants need to be able to ask for a review to fix the mistake.
Reasonable and necessary supports 60 Paragraph 3(1)(d) and 65 17B Principles relating to scheme sustainability I’m concerned about the phrase “so far as is consistent with the financial sustainability of the scheme;”. Financial sustainability is important, but if a support is deemed reasonable and necessary for a participant, the participant should be able to access the support. As I’ve discussed above, you can’t put disabled people at risk because we cost too much. The budget needs to be managed
Submission 317
appropriately so that disabled people (and all Australians) can live safely. The other issue here is that, as far as I understand, for every $1 put into the NDIS, more than $2 is returned to the economy. That certainly fits my experience. After joining the NDIS for autism I was, for the first time, able to work close to full time in a sustainable way, contribute to the economy and pay much more tax. I would like support to do that again with my new disability. If spending on the NDIS benefits the economy in this way, then surely it’s not as expensive as it looks.
Reducing access 25A Meaning of appropriate treatment etc. I’m uncomfortable with the idea that a person has to have tried all “appropriate treatments” even if their circumstances mean they can’t access the treatment. How is that equitable? Many of the people in my circles are housebound or bedbound, making travel to medical appointments difficult if not impossible. In my case, I can go to occasional face to face medical appointments if strictly necessary, but my functional capacity is severely reduced for weeks if I need to leave my town, and I will spend those weeks in significant pain. For some people I know, leaving the house medical appointments is even more harmful than it is for me. That might be difficult to understand for relatively healthy politicians who can fly to Canberra as needed, but it’s the reality for more people than you realise. You just don’t see us because we can’t leave our homes. If this bill is to stop people accessing the NIDS because of where they live or the fact that they are too disabled to access medical care, then what will be done to allow these people to access medical care? Until this is answered properly, this part of the bill can’t go ahead.
Alternative supports I’m struggling with the details in the bill, but I’m thinking about what’s been announced elsewhere about removing people from the NDIS in favour of Thriving Kids, Foundational Supports and Inclusive Communities. The problem with this is that these systems don’t exist yet, so people can’t use them instead of NDIS supports. I’ve had a similar issue while waiting for evidence that my new disability is permanent. I was told that I could simply access mainstream supports. I spoke to my LAC who provided me with several organisations that may be able to help me. Over a few weeks I found the energy to ring every one of them, as well as all their suggestions for who else to contact. Everyone I spoke to told me that they couldn’t help me, except for one or two who offered to support me if I paid full fees myself, but while I’m unable to work that’s not an option for me. So using mainstream supports or alternative supports is a lovely idea, but unless these supports exist you’re telling people to go without support. Until these supports exist and are working well, you can’t stop people accessing the NDIS.
Also, any alternative supports will still need to be paid for, so I really don’t understand why it will be cheaper to set up a new system with new staff and infrastructure to provide the same thing. The only way it’s likely to be cheaper is if they are not, in fact, providing the same thing. Given that the reasonable and necessary criteria include being value for money, any cheaper “alternative” is likely to provide less support and therefore not really meet people’s needs.
Schedule 3 Governance arrangements Part 2 Automation of administrative action This is another scary prospect. I remember when Robodebt was going on. I
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got a notification that I owed the government a large sum of money that I really couldn’t afford. Luckily I’d kept good records and could demonstrate that I didn’t owe any money, but it was still a very stressful period. This seems to be the same idea, but to be honest, I’d be even more stressed if this happened to my NDIS plan. My NDIS plan allows me to live. If automated systems are to be used for anything this important, there needs to be far greater safety measures in place than seem to be included in the bill. Given the complexity of the system, I would only be comfortable with an automated system if every decision had been manually checked over a period of at least a year (for routine processes, longer for more complex or less frequent processes) with a very low rate of errors found.
Unregistered providers it’s been suggested that unregistered providers wouldn’t be able to charge as much as registered providers. Over the years, some of my providers have been unregistered with the NDIS. They have all been registered with the appropriate professional body and provided good services. They’ve told me that registering with the NIDS costs a lot of money and takes a lot of time. As sole traders, this isn’t realistic for them. In one case, I’ve been working with this provider for many years. She knows me so well and knows my needs and how to meet them far better than a new provider would. I also feel far more comfortable with her than I would with a new person. If the price limits are reduced for non-registered providers, she expects that she wouldn’t be able to continue providing services for NDIS participants because it wouldn’t be financially viable. Her business may not survive and I would not have support from the person who is best placed to help me. This takes away my choice and control. It wouldn’t be good value to have to transition to a new provider because it would take so long to build the relationship that allows for efficient progress. If providers are going to be penalised for not being registered, registration needs to be more accessible to sole traders and small businesses. Otherwise those businesses won’t survive and participants won’t have choice and control like the NIDS is meant to provide. This is also unfair on allied health professionals and other small business owners. Economically, if small businesses are driven out of the market, surely that reduces competition and drives up prices, which would mean the NDIS would end up costing more, wouldn’t it?
Finance and economics The stated aim of all of this is to manage the budget and make the NIDS sustainable. That’s of course a reasonable aim, but I’m not sure this is the way to achieve it.
I’m unaware of any long term financial modelling for the proposed changes. If supports are removed from the NDIS, the money will need to come from somewhere or people’s lives are at risk, not to mention our economic participation. If I lose supports and my health declines, I will need more support, which will cost more. Maybe it will cost Medicare instead of NDIS for a while, but putting me in hospital because I can no longer eat would cost so much more than paying a support worker for a few hours a day. If I have a bit more support, I might be able to work again, pay tax, support local business and generally contribute to the economy. So I know it costs money to pay for the NDIS, but in the long run I suspect it works out better for the budget and the economy to fund disability supports properly. It would be very unwise to pass this bill without proper, long term economic modelling that considers the consequences of reducing support for disabled Australians.
Submission 317
Perhaps a better way to save money, would be to look for inefficiencies in the current scheme. For example, before I had a physical disability, I could wash dishes in the sink by hand, so I was happy to buy a house with a sink and no dishwasher. Now that I have a physical disability I can’t wash dishes by hand so I need either a dishwasher or a support worker. If I’d been able to access the NIDS already for a physical disability, support workers for washing dishes (and other domestic tasks that I can’t do) would come under the list of reasonable and necessary NDIS supports, but a dishwasher would be on the no list because it’s a thing that non disabled people buy too. I didn’t need a dishwasher when I didn’t have a physical disability. It might have been nice to have, but I didn’t NEED it and I happily chose not to buy it. Now that I have a physical disability, I have purchased a cheap benchtop dishwasher. It’s still an effort to use it, but it’s much more achievable than washing dishes by hand. If I had NDIS access for my physical disability, buying the dishwasher would save thousands of dollars in support worker hours, but the NDIS wouldn’t fund it because non-disabled people buy dishwashers too. If buying a $300 dishwasher saves thousands of NDIS dollars, surely it would make sense for the NDIS to pay for the dishwasher for the next disabled person who can’t afford to buy their own dishwasher. I’ve heard countless similar stories about other machines that allow disabled people to do things independently but are also available for the general public to enjoy. Given the growing range of automated cooking, housework and other devices on the market, maybe it would make sense for the NDIS to fund these “mainstream” items if it would reduce the need for support workers. Of course there would need to be a system to make sure people didn’t abuse it, but most disabled people aren’t trying to abuse the system, we’re just trying to live.
Thank you for considering my submission. This bill needs a major rewrite before it can be enacted, if at all. This needs to be done in full consultation with disabled Australians and our families. Nothing about us without us.