Submission 22
Why am I requesting the submission be changed?
In regards to removal of support co-ordination, while I agree not everyone needs it, for some of us it is absolutely essential. I have tried to oversee my own NDIS, but even with help it was far too much and I nearly reached mental burnout yet again. When I have a random person decide what I do and don’t need I end up with help far below what is essential. There are periods of time where I come across, in the way I speak, as being perfectly capable. I’ve learnt to mask well with difference not being tolerated in my family & being bullied in school and the workplace. For those who know me well though it becomes apparent just how much help I do need, how much I appear to understand but actually don’t. How my physical fatigue is extremely limited. How my physical strength and tolerance is limited requiring adaptive devices such as a shower chair, over toilet chair, finger splints, neck brace, pressure care cushions & bed, power arm chair etc even though I appear ok. An area I struggle hugely in is intellectually even though I come across as very capable.
For me, my co-ordinator has a much different role than a support worker. My support workers come & go. They frequently chop and change. I have had my support co-ordinator for roughly 10+ years. She thoroughly knows me, my limitations, my strengths, she’s my biggest advocate, she jumps in to defend me when people have over estimated my abilities and then have a go at me because of that, re-stating she informed them upfront that I appear my capable than I actually am. A situation just like this happened roughly 3yrs ago now where at an activity I was doing under NDIS they made an extreme accusation. This left me not just sad, I was suicidally distressed. My support workers rallied around me to help, but it was my support co-ordinator who stepped in and had the knowledge of how to handle the situation, advocate on my behalf, tell them how egregious it was to make such an accusation when they prompted a conversation in the first place (overheard by a support worker), they effect it had on me, and the actions she would take if they dared to say anything further on the matter. She then kept in close contact with me, answered all my questions even if they were silly, made sure I got the type of support I needed to recover. It still took me nearly 2yrs to recover from the situation. Even now I still struggle in some areas. Knowing I have such an advocate in my corner, who thoroughly knows my abilities, the things I can’t do, but also the things I can do and want to ensure I maintain, who helps me give an accurate & realistic picture of my abilities when my default is to strongly mask in front of other people, especially when feeling vulnerable, who helps ensure my whole team is on the same page, not just within NDIS, but my specialists as well, that I’m not doubling up, that people aren’t working against each other. My co-ordinator also helps me know the things that are and aren’t necessary. I told her right from first going on NDIS that I only want what is actually allowed. I don’t care if we could apply for something & get away with it, if it shouldn’t be applied for because it’s not an actual need of mine or it really shouldn’t be funded by tax payers money, then I don’t want it. She has helped me ensure I stick to that. At the same time, when I have had a genuine need & been reluctant to accept the support, she has helped me understand why it’s necessary ie. my group activities which get me out of my home, meeting other people, socialising, doing an activity that brings a smile to me… while it hasn’t stopped the depression, it has definitely helped raise the depths it would drop to, that means requiring slightly less medication, slightly less psychiatric support, I haven’t had a hospital admission in a
Submission 22
few years for pain because mentally I can manage it better, and I can actually say I have friends & a place I feel I belong.
I really can’t describe just how essential my co-ordinator is for me. Many are not tasks that a support worker can carry, they simply don’t have the training, knowledge, qualifications or the many years of experience behind them.
As for the financial cuts… For me this will mean a reduction to the community group activities I do. These have been essential in helping me to have even 1 friend. They’ve also been essential to my mental health in helping lessen the deep depths of depression I would have. I have something to look forward to rather than a life filled only with medical appointments & managing my health.
It would mean a reduction of support. As it is the amount of support I have barely covers my needs, but mentally & physically I couldn’t handle anymore than I currently get. The support I do get means I have people who help me prevent my house from becoming a clutter or hoarder situation. When I first started on NDIS my house was so full of clutter that 1 room was inaccessible. Now that room is clear, I have a room I can use as a multi-purpose area like it was meant to for craft, for at home physical therapy, and for when I need a carer to stay over. My lounge/dining area frequently builds up clutter from the coming & going of everyday activities & between my mental & physical health I don’t see it until it’s at a bad place at which point I’m overwhelmed & melt down. My workers help me to clear it, with that help I don’t reach that melt down point as often, because I know with the help I can manage it, I don’t have to face it alone.
Outside of home my support workers help me with tasks that have consistently proven to be a challenge. When grocery shopping on my own I have been stuck in a supermarket for 6hrs!! With my support worker I have the help to make decisions, not overspend, not overindulge, help to reach the high & low shelves that would leave me in pain, help to lift the items that are too heavy for me ie. a bag with 2+ 1.25L bottles in it. They also help me with my medical appointments, both with getting to & from them, but also in the appointment itself as I rarely remember all I was told, what I wanted to ask, any instructions I’ve been given etc
On top of the at home, and out of home support I get, I also have a cleaner once a week, and a personal carer to help in the shower. Which can I cut out? Do I cancel the cleaner, knowing my unit will become unhygienic very quickly, especially in the bathroom? Do I cancel the once a week personal carer which enables me to have a full shower & wash my hair once a week, washing properly instead of a very quick splash wash? Without that proper shower I begin to smell. I wouldn’t want to leave me house from the embarrassment. Do I cancel the in home support, knowing my place will once again gradually fill with clutter, & watch my mental health decline? Do I cancel the out of home help ie. grocery shopping & appointments, and watch my physical health decline due to increased pain, fatigue & lack of specialist support? Do I cancel the group activities, the one highlight of my week that is something not medical or health related
Submission 22
where I can just be welcomed as I am, know I have support if needed but otherwise I can just be, make friends, enjoy an activity…
Already I have seen decline in my health as various supports have been denied, which has in turn created a higher cost for NDIS. Ie. for my specific condition, regarding my feet & ankles, orthotics on their own isn’t suitable. If they are put to the correction required I don’t have the strength in connective tissues (not a matter of building up muscle strength), to stop myself from rolling my ankle the opposite way, so they have to be made slightly less than what I actually need. To then achieve what I do need I have to add supportive orthotic runners to them. These are much more expensive than being able to go to Kmart & grab any runners. There is no way I can afford them on the disability pension. NDIS initially recognised it as a package need, but now will no longer cover the runners. My podiatrist & Orthotist cannot give me the orthotics at full correction knowing it will result in further injuries. This means I am left with no choice but to upgrade to requiring AFO’s. These are more expensive than the orthotics + runners, but also means my physical abilities will decline. The muscle strength I do currently have in my feet & ankles will gradually decondition due to relying on the AFO’s for their support. This means my time out of them, ie. at home before & after putting them on, I will be much more prone to injury, with my condition, that means even in bed as they will be too lax & won’t have the strength to hold themselves in place without injuries like being twisted, sprained, strained etc.
At the same time there are splints I do need that would greatly improve my independence. Ie. silver ring splints for my fingers. Why silver ring splints and not the cheaper oval 8’s? The plastic oval 8’s do not allow for multiple rings on the one finger, especially on those with smaller hands. Even for those with average sized hands when using multiple oval 8’s they usually pinch & gradually break down the skin. The silver ring splints allow for multiple splints on an individual finger without pinching or breaking down of skin. I was able to get the silver ring splints for 2 fingers on each hand before NDIS stopped covering them. Just having those ones alone has enabled me to be able to push a lift button without injuring my finger, cut my own meat when eating… I can’t describe how embarrassing it was needing my Dad to cut my food up for me when eating out at a restaurant, but now I can do that myself without hyper-extending my finger to the point of injury. I can continue with my card making crafts.
Without all of these supports I would be back to where I was, being admitted to hospital 2-3 times a year for uncontrolled pain that left me bedridden, unable to turn in bed, let alone get up for the bathroom. I’d be in hospital for 2wks at a time, then onto a rehab facility for a further 2- 4wks for help to regain strength to walk again. On top of that I’d be admitted into ED for frequent IV hydration to stop me from constantly passing out. My body cannot seem to hold adequate hydration when I am trying to manage everything myself.
The support I have been able to get through NDIS has enabled me to reach a point of maintaining a relative stability, though that has become slightly less with the cuts already made thus far. To go back to requiring regular hospital admissions, frequent mental melt downs & breakdowns, suicidal depression… that is no life. My family can no longer help me unlike before
Submission 22
either. My parents are now 68yrs and 75yrs and both have significant health issues. My siblings either work full time, have their own mental health needs, or live overseas. I am fully dependent on the support of NDIS to help manage my non medical disability needs. If the supports I currently receive have to be ceased due to cuts to my plan I honestly don’t know how I will be able to manage again. I already have to choose between groceries and medications, so I don’t have money of my own to try to use to cover those things.
My suggestion to the reform is to make some adaptions. Many places still add extra fees for those on NDIS. They won’t always name it as that, they know they’re not meant to do this, instead they’ll say there is a 100% markup fee for any items purchase outside of their specific clinic. These things should be made illegal. Those on NDIS shouldn’t be charged a higher amount to swindle tax dollars.
There should also be room to explain why a specific method of treatment or equipment is being requested, so there is the ability to point out when an option NDIS would default to will actually cost much more money than the option that has been recommended.
Co-ordinators shouldn’t be able to be just anyone. Not only should it require a certain level of training, but a set amount of years of experience within the mental health industry, not just as a support worker, but in various fields and there should be criteria to meet.
Providers should be properly regulated. When they are employed to meet someone’s needs it means that person is dependent on them. It isn’t acceptable to have a support company tell someone who requires 24/7 support ‘sorry, we can’t find someone to take the shift’ leaving them without support & potentially dying just because someone isn’t there to replace their breathing tube when it falls off during the night or help them get to the bathroom or clean themselves after an accident, or be able to eat. Just like a hospital wouldn’t be allowed to not have staff if theirs called in sick - they have to call in staff from an agency or pool to cover, even if that costs more, it should be the same for an NDIS agency who has accepted a 24/7 client. If that results in places no longer accepting 24/7 clients then there needs to be something else arranged for them.
Respite should always be audited. Even after the changes were made & only those who lived with others could access it, I still heard of many situations where it was grossly abused. People should always have to justify what they have spent the money on. They shouldn’t be allowed to use the money to pay off their household bills, or have their partner come on respite with them as their ‘support worker’ when it’s meant to be respite from those they live with, then claim support worker wages when they return.
There should also be restrictions on where items can be purchased from without valid justification & even then it should be audited. Why? I know someone who was allowed to use some of her funding at Adairs as apparently they were the only place that sold a very specific waterproof bedding their skin could tolerate. They then proceeded to spend that money on decorative doona cover sets. But that wasn’t checked up on to ensure it was spent on what it
Submission 22
was meant for. There does need to be room for purchasing from places that aren’t always allowed, sometimes it is accurate that it’s the only place to get a specific item from… but it should always be checked that it was the item purchased & if not then the person should have to reimburse NDIS for it.
There also needs to be rules in place so people can’t spend on medical items that can be deemed as needed for them, but have built up excess & so then onsell it & use that money on their own wants.
Support workers should be separate from the providers of services ie. cleaning, personal care, support co-ordination. Each of those services should be required to submit a monthly checklist of services in accordance of what the other services have said they’ve provided. If the client says they haven’t received those services it should be investigated by that worker to see if there’s just been a misunderstanding or if that service really hasn’t been provided. It would help stop providers from getting away with invoicing for services not rendered or overcharging.
There are so many other ways that NDIS could save so much money without making cuts to essential services.
This scheme was promised to change the lives of those living with disabilities & making it so we could access the community, have equal access. I can’t describe how difficult it has been to have been given something, then to have it ripped away. To continue to decrease services is to sign your name agreeing to those with disabilities being made to fend for themselves again, live in unhygienic squalor, go back to being isolated, go back to the mental health & hospital services being over inundated with those who have ongoing life long chronic mental or physical health conditions rather than for acute needs.
Australia needs to ask itself how we want to be seen. How we want to treat our people. Do we want to mirror the US on its greed and disregard anyone who isn’t part of the wealthy? Do we want to maintain our former status of having the best of healthcare world wide? Known for caring for all people, ensuring equality and equal access?
What many don’t realise, is that so many people on the disability pension & NDIS, with enough support, can then return to work. Even if that is only 2 days a week it still means they’re then also paying tax dollars. Is that not better than them not being able to work at all & being fully dependent on government assistance?
Also, there are so many menial jobs people with disabilities could be doing to earn some sort of wage. Shelling envelopes, sorting recycling and so forth. There are many jobs that can work for those with disabilities, whether mental or physical that just aren’t available at present. Even if it’s not a full wage, at least it’s something & at the same time saves a company from potentially needing to pay a full wage or afford a machine to do it for them.
Submission 22
The NDIS needs a committee of participants who help advise on ideas to save. It’s the participants who get a birdseye view of the many problems where there’s budget blow outs that just aren’t necessary, but also where there are short falls of services, or even over catering of services. That committee should be made up half of people which NDIS themself selects, and half who are a random selection of NDIS participants. The committee should change every year. Why? Because when ‘working’ in that position you’re no longer just a participant. It brings a different view to the table which can be conditioned. There should always be a rotation of people on that committee for fresh ideas. With NDIS being able to choose half the people it means if someone has been particularly beneficial on the committee they can retain them for a further year, but no one should be able to serve on it for any longer than a maximum of 2yrs. If NDIS wants to retain that person they should be offered a permanent role separate to that committee.
I know this is very long. I tried to write it myself so some things are repeated or over explained sorry.
I really hope Australia takes a good look at where it’s heading. There is nothing to be proud of in the US model of health care nor even a hybrid of AU/US healthcare. We need to stop bowing to the pressures of the 1% & be proud of who we have generally been, a nation who actually cares for its own. We are a nation founded by both indigenous & colonised ‘undesirables’ sent here because other countries didn’t want them. We owned that. We built on that. We showed that we weren’t a useless people, that we could make something of ourselves and not only that, but we would take care of our own while doing it. We wouldn’t show the disgusting nature shown to us by those who rejected us. We would see that everyone had a fair go, everyone had access to essential needs. Every voice was heard. Please don’t change our country from that. The world doesn’t need another carbon copy country… it needs Australia. Someone who stands alone for what is right, fair, just and true. Someone who won’t turn its back on someone just because they’ve landed on a bad time but who recognise they are still a human being, still worthy, still counted, can still contribute. Because often times, it’s those who have faced adversity that rise up and make a true difference. Please continue to show that Australia is set apart and recognises ALL people as being relevant, not to be trod on to raise others higher.
Regards,