Sick, but not sick enough!

[Deleted]

Sick, but not sick enough: surviving on Newstart with a chronic illness is hell

Two years ago I had to leave a job I loved. Since then I’ve had to fight for my rights in a social system that fails sick people. Access cuts to the disability pension have made Centrelink hostile territory for those with chronic illness or disability. I know. I’m one of them.

29.53% of applicants gained access to the Disability Support Pension last financial year. The government wants you to consider this a win. But cutting access to the DSP doesn’t mean those who’ve been rejected are working. It means they’re on Newstart, an allowance that’s fundamentally unable to support those with disability or chronic illness.

I have endometriosis. You might have heard of it, particularly with the recent publication of the national action plan for endometriosis. I share the condition with around 700,000 Australians but symptoms vary. Some with endo live relatively functional lives. Others, like me, have a landmine go off in our pelvis that takes our whole body down with it.

In 2016 I left a job I loved because I was too sick to work. I then did what many sick people do: I sought help from Centrelink. My first Newstart claim was rejected due to a paperwork error. The 21 days spent appealing that decision foreshadowed the next 17 months of my life.

If you’re on Newstart while you’re sick, you can get an exemption from job search responsibilities until you’re well enough to look for work. It’s a good system, provided you’re not sick for too long. After my first doctor’s certificate expired, I attended an employment-ready assessment where my medical exemption was extended while I worked with doctors to get better.

Only I didn’t get better. Two surgeries, a truckload of medication, and a bank-draining team of medical professionals later, I accepted my new normal. On good days I can write or even leave the house. On bad days I can’t leave my bed. My really bad days are spent on the shower floor trying not to blackout. The biggest barrier to my finding regular work is I never know what kind of day I’ll have in advance. And if I push myself, I risk bad days becoming bad weeks.

Armed with 12 months of documentation and the support of three doctors, I applied for the DSP in August 2017. I was rejected two months later. The rejection gave no specifics but a Centrelink staffer later told me it was because I’d started seeing a pain specialist and therefore my condition wasn’t “fully diagnosed, treated, and stabilised”. I set about appealing the decision.

Then my job search exemption expired. When I enquired about another, I was told I couldn’t get one if my condition was unchanged, even if “unchanged” meant “still sick”. When I asked whether I could submit a doctor’s certificate, I was told Centrelink won’t accept doctor’s certificates for the same condition twice. “Newstart isn’t designed for sick people,” the Centrelink staffer said. If I wasn’t getting better I should apply for the DSP.

I cried as I walked home. It wouldn’t be the last time.

I’m supposed to find work for 7-15 hours a week. When I asked about the sporadic freelance work I do I was told that it didn’t count. I was told that freelance and gig work – often the only work flexible enough for those with chronic illness or disability – often isn’t accepted as “work” by Centrelink. They will, however, record your earnings and reduce your allowance.

That turned out to be wrong information. I’ve since learned my freelance work does meet Centrelink’s requirements to be counted as work. This is far from the first time I’ve been given misinformation. I’ve been sent to the wrong appointments, forced to chase documentation I didn’t need, told I shouldn’t bother submitting paperwork that would help my situation, and – perhaps the worst part – most of the time the misinformation is corroborated by other Centrelink staffers or their affiliates. It’s exhausting.

Meanwhile, my DSP appeal languished for six months before being rejected. When I called the number on the rejection letter, I had a genuinely horrific conversation.

The assessor cited the fact I was on medication to suppress menstruation as evidence my condition wasn’t “fully treated and stabilised”. Period suppression is standard practice for those with endometriosis. It’s not treatment, it’s maintenance. I’ll be on medication to suppress menstruation so long as I have my uterus.

It’s a shame, the assessor continued, that my doctor won’t perform a hysterectomy. I explained that hysterectomies don’t cure endometriosis but my doctor is willing to perform one if I choose because I’m medication resistant and have adenomyosis.

Their response? Because a hysterectomy is on the cards, my condition isn’t “fully treated”. If I appealed further and was successful, I wouldn’t be “allowed” to have a hysterectomy in the next two years. While I was reeling from this, they said unless I’m “running around without knickers and hiding in bushes” then my co-morbid mental illness is also not severe enough to qualify me for the DSP. They didn’t try to assess the impact of my illnesses the way they affect me: cumulatively.

So here I am, living on $650.67 per fortnight (after rent assistance) when my medical expenses alone start at $300 a month (post medicare safety net). I have to find 7-15 hours of work but I have to fight to have my freelancing count toward that number. I don’t qualify for the DSP but Newstart “isn’t designed for sick people”.

And almost one-third of those on Newstart are in my position.

The system is failing those it should be helping. But hey, at least the budget’s looking good.

www.theguardian.com/commentisfree/2018/sep/29/sick-but-not-sick-enough-surviving-on-newstart-with-a-chronic-illness-is-hell?CMP=Share_iOSApp_Other

Stacey Thomson is an artist and writer
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[Deleted]

This shouldn't be happening in the country I was conceived, born raised, educated and worked in for fifty years. And my biggest problem with it is; is it self preservation or apathy that perpetuates it. How much can a koala bear!

[nomadic]

but you are more grizzly than koala which is not a bear anyhow. i hope eric reads it also. but this isn't really new news. Been going on for years. Pure B...adry.

[latindancer]

And a lot of incompetence and stupidity thrown in as well.

[tasjo]

It would be interesting to know if she appealed through to AAT... In my experience they were a lot more impartial.

So many seem to get told to produce a medical certificate only to be told they can only have one unless their condition changes.

My experience with my DSP claim also makes this at least partially incorrect.

When someone applies for DSP they should be switched to Newstart Provisional, and as such be exempt until they have exhausted all options of appeal with their application. They shouldn't be told to get a medical certificate at all because they are designed to be temporary. But, as often seems to happen, unless you ask specifically if you are on Newstart Provisional because you are either applying of appealing your DSP claim then noone tells you.

[Deleted]

Former watchdog chief labels disabled benefits process a 'hostile environment'

Andrew McDonald, who chaired Independent Parliamentary Standards Authority, says system is ‘Kafka-esque’ A former top civil servant has criticised the disability benefits assessment system as a “hostile environment” after being told he was ineligible for support despite having Parkinson’s and terminal prostate cancer.

Andrew McDonald, 56, who ran the parliamentary body overseeing MPs expenses before retiring on health grounds, had his benefits stopped after assessors decided he was no longer ill enough to qualify for personal independence payment (PIP).

McDonald described the assessment process undergone by hundreds of thousands of chronically ill and disabled people each year as crude, unprofessional and Kafka-esque in its complexity.

“I was shocked by the way this was being administered against the interests of some of the most disadvantaged people in the country,” he said. “PIP is beset by profound administrative failures which work to the disadvantage of disabled people.

“My personal interactions with the [PIP] process were perfectly pleasant; but the system as a whole does create the impression of it being a hostile environment and one where two of the foes are complexity and the sense that it is not a level playing field [for claimants]”.

McDonald, who chairs the disability charity Scope, said: “I thought this was a system to give people a hand up; in practice they encounter a sleight of hand that is completely out of kilter with the best traditions of British public service in which I was not only raised but worked for most of my career.”

He called on the government to look afresh at the entire PIP process, which has been dogged by controversy since it was introduced in 2014 as a way of cutting the disability benefits bill. The controversial assessments are carried out by private contractors Atos and Capita.

Earlier this year, a cross-party committee of MPs concluded that the PIP process was error-strewn and insensitive, after hearing evidence of poor practice from more than 4,000 claimants. The government responded that it was working to improve the system.

McDonald, who has challenged the decision to stop his benefits, said it was shocking that the latest official figures show 71% of PIP decisions were overturned when appealed against at tribunal. “The government should set aside any notion that PIP has been fixed,” he said.

PIP is intended to help with the additional costs of living with disability, estimated at £570 a month. It is not means tested or related to employment status and is typically used to meet special transport needs or health-related heating or food bills.

McDonald was diagnosed with Parkinson’s, a degenerative disorder of the central nervous system, in 2007. Three years later, he discovered he had prostate cancer and was subsequently told by doctors it was incurable. He is shortly to undergo brain surgery in attempts to mitigate some of the worst effects.

He retired in 2014 as the chief executive of the Independent Parliamentary Standards Authority and qualified for PIP the following year, a decision which was reaffirmed at review in 2017. Each time, assessors awarded him 11 points, comfortably over the eight point threshold for lower-level PIP support, which amounted in his case to about £3,000 a year.

At his third review assessment in March, however, he was awarded two points – a decision which suggested his health was improving. “I was flabbergasted: I had two progressively degenerative conditions and my Parkinson’s had become worse since the turn of the year,” said McDonald. “It’s now described by my neurologist as ‘very severe’.”

The assessor – an occupational therapist – had little understanding of Parkinson’s, he said. “She did a common test of twisting the forearm at the elbow. She concluded from this I have full power in my upper limbs. It’s nonsense. Daily, it is a nuisance to me that I am weak as a kitten in my upper body. ”

The system failed to account for the way Parkinson’s fluctuates dramatically, through the day and over time, he said. “I got dressed today without too much trouble, though my cufflinks eluded me. Two days ago, it took me 90 minutes because of the tremor in my hands, my lack of strength. Putting on jackets is a nightmare.

“That sort of variation from day to day could be captured in the system but, in practice, the people in the system I was working with were not capturing it.”

He asked the Department of Work and Pensions (DWP) to review the decision but it upheld it on the grounds that, although it was “surprising”, the assessment showed his condition had improved and it was up to him to supply evidence to prove that it had not. The DWP was effectively suggesting the loss of his benefit was his own fault, he said.

A DWP spokesperson said it monitored the quality of the PIP process to ensure it worked well for everyone. “We constantly seek to improve the quality of PIP assessments. We have undertaken two independent reviews of PIP and most recently announced that we will pilot video recording of assessments, to help increase people’s trust in the assessment process.

McDonald’s benefits were stopped in April and he lodged a tribunal appeal against the decision within weeks. Four months on, he is still awaiting a date for a hearing.

Although the government has promised that people with long-term degenerative diseases should no longer be given annual PIP assessments, this does not apply to claimants, such as McDonald, who received lower-level awards.

He had been able to manage financially without PIP, he said, but he was aware not everyone could. “If you are on a low income the sudden decision to stop PIP is a really serious blow – and it’s a blow from a bewildering system.”

www.theguardian.com/society/2018/oct/06/former-watchdog-chief-labels-disabled-benefits-process-a-hostile-environment

[Deleted]

This may be from the UK, but it certainly shows relevance with our own system. Perhaps though, they are even worse if that's possible, when they treat one of their own like this. What chance would the everyday average person have over there? Not much! Cheers bear