Don’t let the bastards get you down

Or at least, that’s what I tell myself when I’m dealing with government agencies. “It’s their job to put you off.” “They make it so difficult you’ll give up – don’t let them.” “The systems are designed to exclude you, you have to fight for your rights.” But sometimes, it’s just all too hard.

In September or October last year, I applied for the NDIS (National Disability Insurance Scheme). When passed by a Labor government in 2013, it was intended to be a one-stop-shop for people with disabilities, enabling them to access services that facilitated their independence and connection with the community. Further, it was intended to be an enabling tool by which those applicants able could tailor their own plan to their specific needs.

Of course, it has been none of those things. For the few who are approved and receive appropriate funding, the NDIS is a great thing. When it works as it should, it can greatly improve the lives of people with disability. When it doesn’t, it is the cause of great stress and despair for those who are rejected or have funding cut.

Currently, I am one of those people. I was rejected in June (a mere 9 months later!) on the basis of permanency. This was not a surprise – I knew I was not an ideal candidate, not having a listed condition, so they would try any trick in the book to deny me scarce funding. But trying to get services to which you are entitled is always an uphill battle, made that much harder by my limited capacity as a chronically ill person.

I have applied for an internal review, sent in supporting documents, contacted an advocacy organisation and my local member’s office. It should surprise no one reading that when I rang NDIS a few weeks after sending my documentation by email, it had been received but not “actioned” (ie, read). They were not allowed to give a time frame for a review. If I had a dollar for every time someone asked me for a time frame, the worker chuckled.

 

This is not new for me. Anyone who has dealt with social welfare in Australia in the past knows the process is brutal and humiliating by design. I offer a wry smile when someone completely new to the system expects to be accepted for a payment automatically. I wonder what they would say if I told them it took 2 years and countless appeals for me to successfully claim disability.

Students are dependant on charities for food while waiting months for their Youth Allowance to be processed, with more than 33 million calls to Centrelink going unanswered between July and January. At the NDIS, plan reviews are taking up to 9 months to be completed, leaving at-risk people with inappropriate or no services in the meanwhile. People with mental illness are routinely being denied access, and the process of application has been described as “soul wrenching” by applicants made to “feel like [they were] just a number and an inconvenience.”

I know all of this. I know there is no room for dignity, nor pride, in this process. You feel like you shouldn’t have to prove yourself in order to get support? So do I, but you swallow that feeling and debase yourself because you have no choice.

 

Yet still, despite my awareness of the situation, I feel as though I’ve been made a chump of by government bodies. I’ve done the rounds again and again and again, ringing and visiting organisations and speaking to workers who tell me I’m not really eligible for anything they can offer, but have I tried ringing X agency instead? Surely I’d have better luck there.

What can you do when you are denied services, or even an assessment for said services? After you’ve pushed and exhausted all your possibilities and something in the back of your mind says, this isn’t right, but you’re too tired to fight anyway?

So, I change tactics and try something new. I’m still fighting, making calls when I’m too tired to even maintain conversation with my family, researching endlessly about which tack to take, which boxes need to be ticked. Don’t let the bastards get you down, I keep telling myself.

 

Of course, the bastards are not just the bureaucrats who design such impassable systems, or those workers who take delight in enforcing them. The bastards are those who read the Herald Sun or the Daily Tele, railing against mythical “dole bludgers” while maintaining outrage about the worthy-yet-denied Centrelink applicant in their sob story of the week. The bastards watch A Current Affair, gleefully cheering on the “reporter” who chases down a disability pensioner out for a game of bowls, because disabled people aren’t meant to have fun.

The bastards are those who believe in the deserving and undeserving poor, the good and bad cripple, who have been fed the lie that our systems are choked beyond capacity by non-existent “scammers”, not by those in power who would systematically starve our country of funds for social services so those in need have to scramble for what’s left.

 

This is why I, and so many others, have been denied vital support services and funding. Not just because those in power wish to crush the social welfare system on which our country supposedly prides itself, but because we let them. I’m fighting for myself, but I can’t let go of the bigger picture, and the real battle.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

16 thoughts on “Don’t let the bastards get you down”

  1. Sigh 😔As you know from my posts the US is no better. It’s humiliating at best to feel you are groveling. And then be told no. It wears at your soul. I’m proud of you for fighting onward. The alternative is doing nothing, which gets you nowhere. But gosh it takes from you and your reserves. Not a pleasant experience, but I think it’s awesome you’re sharing here, and that you’re not giving up.💪

    Liked by 2 people

  2. “The bastards are those who believe in the deserving and undeserving poor, the good and bad cripple, who have been fed the lie that our systems are choked beyond capacity by non-existent “scammers”, not by those in power who would systematically starve our country of funds for social services so those in need have to scramble for what’s left.”

    This is so true, all of this is so painfully true. Its the same in my country, too, and they keep cutting funding to social programs that are supposed to be there to help vulnerable people – or hell, every time my government cuts healthcare funding, they’re screwing over everyone in the country, without a thought or care as to what suffering it causes – especially to those who are disabled, mentally ill, poor, etc. Something I never discuss is that I’m actually on disability, and one of the reasons I don’t ever bring it up is because the stigma is ridiculous and the level of bullshit insensitive, ignorant comments you have to deal with is just mind blowing (like telling me that being disabled is like being on permanent holiday. HA! Sure. *rolls eyes*). The BS you have to deal with even once you’ve been accepted is mind blowing. I can’t tell you the number of times I’ve been denied care because it was the only “insurance” I have, even doing something as simple as going to an eye doctor to get glasses, they go from being nice and helpful to (once they’ve found out I’m on disability so they can’t charge as much) treating me like I’m the worst scum on the planet. But I shouldn’t complain, because at least it’s something, right?

    I really hope that you get accepted soon. And that there is a radical change in the way these programs are managed so that they actually TRULY help the vulnerable instead of constantly punishing them.

    Sending you so much love, keep fighting as much as you can, and I know you’re already doing some of these, but enlist the help of advocacy groups, your local MP, an ombudsmen, even a legal aid lawyer (I don’t know if they have legal aid in Australia, but I hope there is at least something similar), maybe having a loved one help advocate for you…anything you can do, and that others can do to help you – just don’t give up! What they are doing is WRONG, (I know I don’t have to tell you that, but it bears repeating) and they shouldn’t just get away with denying care and funds to people like you who these programs were put there in place to help.

    And sorry for my rant before!

    Liked by 1 person

    1. No apologies needed, rants are most welcome! I’m so sorry you’ve had that experience. I understand the hate towards disability recipients too – taking taxpayer dollars etc – though that comes mostly from the general public. It sounds like a different system if you’re being denied medical care because of it. What a horrific neglect of responsibility. I have this theory that people hate disabled people, and when they find out someone is on disability, it acts as a semi-acceptable channel for their hatred. At least that’s what it feels like.

      Thank you for your support and advice. I have sought out advocacy, they also suggested legal aid so I will consult with the advocacy organisation first to see what my options are. Much love ❤️

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  3. I am so sorry you are going through all this. A dear friend of mine here in the US, who is fortunate insofar as her parents have some resources, had to go to court three times to get the coverage she was entitled to. Apparently you have to keep going until you get the right judge. She finally got coverage a month ago, but it took something like four years after her diagnosis. I think our Republican masters just want sick people to heal themselves with prayer.

    Liked by 1 person

    1. Honestly I don’t think they care if sick or poor people die. It doesn’t affect them. What a horrible experience for your friend. The next appeal process is a tribunal hearing and I’m not sure I could go through with it as apparently they drag up your private medical records as evidence.

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  4. I am so sorry you are dealing with so much bureaucratic nonsense and stonewalling in trying to get what you need and are entitled to; it is appalling that these programs are created and then access to them exists in name only, withheld until someone proves they are, as you say, a “good” disabled person, or have convinced the gatekeepers of the worthiness of their need by begging and jumping through evermore absurd hoops. Your perseverance and determination are remarkable, and sadly necessary. You are a wonderful person and are worthy of dignity regardless of what a cruel system designed to deter you says or does to convince you otherwise. Sending lots of love. ❤

    Liked by 1 person

  5. Just as ridiculous here in America. My boys can’t get any help until they turn 18. (unless we own nothing, no house, our car value even determined) And then they need a letter from the Dr confirming they have Down Syndrome, and are disabled. Seriously??? Do they think they are going to College next and getting a well paying job? Will “they” hire them?

    Help us all. I get so tired I often need a week to recover from 1 phone call. But that’s how they win. We go away.

    Liked by 1 person

    1. That’s right. They want to grind us down. And it’s too easily done. I’ve heard similar things about teens/kids with ASD etc, they have to bring reams of evidence in every year to “prove” they are still disabled. Like it goes away with age???

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  6. Sadly it’s more of the same in Canada. I was rejected twice for our federal disability program; I only got approved once I quite literally matched the example on the form (tube feeding that took more than 6 hours a day). I’m well enough to be working now, but getting ‘special accommodations’ for my disability – working from home one day a week – was like pulling teeth. I just had to submit new paperwork because my boss thought I ‘should be better by now’. B**ch, I’ve got inflammatory bowel disease (and am waiting on a POTS diagnosis); it’s not going to get much better than it is right now.

    It definitely doesn’t help that a lot of places see looking after your health as somehow being disloyal to your employer. I’ve been pretty vocal about telling people that they should talk to their doctor if they can’t balance full time work and staying healthy. One friend is actually off on stress leave now, and 2 or 3 more should be (we’re talking having sobbing breakdowns in the bathroom, insomnia, hair loss – the works). But the amount of trash talk I hear about ‘not sucking it up and coming into work’ or how ‘delicate’ someone is for asking for an acccomodation fills me with rage. Which, since I have IBD, then makes me flatulent. So I guess I get my revenge in my own way. 🙂

    Anyways, sorry for the rant. I found your blog via Demented Fairy, and I’m so glad I did! Looking forward to seeing all your projects, and reading about whatever you want to share. Very nice to meet you!

    Liked by 1 person

    1. I’m sorry to hear that. I’d hoped Canada would be a bit more progressive in this matter but I guess not. The whole narrative about asking for help for chronic illness and disability is frustrating to me. And don’t get me started on some people’s use of the word “delicate”….

      Nice to meet you too!

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