Ask a Politician, Update

A little while ago, I asked you for questions you'd like to ask the various parties in the election.

I've sent the Liberals, Labor, Nationals and Greens the following email:

Hello, my name's Iris Carden and I write the blog sometimesitislupus.com.

I have a series of questions of interest to people with chronic illnesses, which I am providing to all the major political parties. I would like to be able to publish everyone's answers to these questions together to allow readers to compare easily.  Please tell me only what your party's position is, not what you believe is wrong with another party's position.

Would someone in your media department please get back to me with your party's responses by the 25th of June?


1. If  you were in government, what would the future of Medicare be? (Ie, would it be privatized? Would the freeze on rebates continue?)
2. Quite a number of people with lupus have been unable to gain Disability Pensions, despite their doctors being insistent that they should stop work. What would your government's position be on Disability Support Pension for people with chronic illness? (Particularly episodic illnesses, where the patient can appear fine one day, and be crippled with pain, fatigue, and mental confusion the next?)
3. Does your party support the idea of a renewed Chronic Illness Dental Scheme?
4. Do you plan any changes to the Pharmaceutical Benefits Scheme?
5. Is there any other message you would like to give to Australians living with serious chronic illnesses?

Thank you for your attention to this matter, I realize a blog will not rate as highly in your priorities as a major news outlet, but the community I write for is very interested in these matters (our lives, in fact, depend on them.)

Grace and peace
Iris Carden
iris@sometimesitislupus.com

Would you like to know what I've had back so far?  Everyone except the Nationals sent me an email acknowledging receipt of my email.  Labor has sent a further three emails asking for donations and inviting me to volunteer for them.

That's it so far.

I wonder if any of them will take the time to give me an answer to the questions?

Update 
10//6/16  That's now four emails from Labor asking me to donate or volunteer.
11/6/16 Now seven emails from Labor asking me to donate or volunteer.  No emails from any party answering my questions.
13/6/16 Now nine emails from Labor asking for money or work.  No emails from any party answering questions.
18/6/16 I can't be bothered counting any more.  Labor has continued sending me two emails a day (and an extra on one day when they asked permission to ring me about how I could volunteer.)  Still no answers to the actual questions.  

What would you ask a politician?

OK Lovely lupies, we have a Federal Election coming up on the second of July (oh you knew that?)

If you could ask any questions of the main political parties in the lead-up to the election, what would they be?  (I checked the AEC's list of current political parties and there's no way I'm going to try to contact all 20 or 30 of them.)

So here's the deal:



If you lovely lupies give me questions or issues you want to know what the parties plan to do if they get control, I will forward a list of questions to the major parties. (Every party would receive exactly the same questions, so that would hopefully help you compare answers.)

If they send me answers, I'll publish them ahead of the elections.

There's a couple of big "ifs" there.

So my question for you at the moment is, what questions do you have for them?

Issues I think might be of interest to people with chronic illness might include Medicare, the Pharmaceutical Benefit Scheme, the Disability Support Pension, just as a starting point to get you thinking.

You can give me your questions in the comments here or on social media.

I Don't Mean to be a Burden

If you watch the news some days, you might be forgiven for thinking that the Disability Support
Pension is overly-generous and given to far too many people.

Headlines like "Disability Support Pension Burden Hits $17bn This Year" do nothing to  make people think that perhaps people who need the pension are not getting it.

The idea that the DSP is out of control, and needs to be brought back into line, has been supported by three successive responsible ministers: Kevin Andrews, Scott Morrison, and now Christian Porter. Clearly with changes of minister, and even a change of Prime Minister, the Government's view on the DSP hasn't changed.

It is true that the number of people receiving the DSP has reached record levels.  It's also true that the actual population of Australia has reached record levels.  Add to that, that the retirement age (particularly for women) increased about a decade ago, so people have spent more time on the DSP before moving to the aged pension, and the increase is not all that dramatic.

The government has begun working on ways to reduce the cost of the DSP.  In the 2014 budget, DSP recipients under 35 had their ability to work reassessed. It was planned to remove as many people as possible from the pension.

The rules for qualifying for the DSP have been tightened up, to the point where a terminally ill man was refused the pension, on the grounds that he could recover and return to work.  The effort to save money by not granting the DSP has lead to the administrative cost of dealing with appeals.  Ten percent of appeals have resulted in the appellant receiving the DPS.

Long before these rules were tightened, I knew a number of lupies whose doctors insisted they stop work - but who Centrelink refused the DSP to.  This begs the question: when a lupie's own doctors and specialists say don't work, and the Government says you can't have DSP, how is the lupie meant to survive?

Another means of saving the government money has come from a new way the government assesses income from defined benefit superannuation funds when considering the amount of pension paid.  This affects both aged and disability pensions.

The rationale behind this was that some couples were getting $120,000 per year from defined benefit funds, yet were still able to collect a pension.  On the surface, that looks like a significant loophole to close - but not everyone on a defined benefit fund receives that kind of money.  I receive about $6000 a year from my superannuation fund, and that has been enough to cause my DSP to be reduced under the new assessment rules. My income hasn't gone down quite as much as some other people I know of, but it will mean a tightening of my personal budget. (My personal budget is going to be more stressed, because one of my regular medications is no longer subsidised under the Pharmaceutical Benefits Scheme. The drug, paracetamol, was cut from the scheme, because it's a cheap over-the-counter medication people take once a while for headaches and minor pain,  except when it's in the higher dosage everyday version for people with chronic pain.)

So the squeeze is on for people with all kinds of disabilities.  Getting a pension is getting harder and harder.  Keeping it isn't guaranteed. And if there's any "loopholes" out there that mean some people are getting more than their share, you can be sure it will be closed, even if it affects the people who weren't getting all that much anyway. 

I get it.  The DSP is a massive "burden" if you look at it in terms of dollars. But it's not just a matter of dollars.  It's a matter of vulnerable people, people who are sick and disabled, people who in general, didn't choose to be sick and disabled.  When did we cease to have value as human beings and just become a financial "burden"?

Oh, if you see a "tip jar" with a request for your loose change appear on this blog, you'll know why.

Disability Support and Lupus

Right at the moment, there's a lot of discussion going on over the review of the Welfare system here in Australia.

There's a 176 page report available. (You can see a copy of it on the ABC news story about it.) There was a time I would have been able to read it, translate and summarize it for you.  That was before lupus brain fog.  Now, I'm settling for reading and watching news and making as much sense as I can of what journalists have already read and interpreted. (In research, that's called using secondary sources instead of primary sources, which is of limited value, but let's make do for now.)

One of the things being talked about is the Disability Support Pension.  According to news reports, the report is recommending simplifying all Centrelink Payments (which I'm sure nobody would argue with.) But it's also recommending moving a number of people off the DSP if they are determined to be not permanently disabled.  People would be on other benefits the same as job seekers, and would be expected to be looking for work.

For the most part, there seems to be some awareness of the reality of disability, but what shocked me, was seeing a copy of the Courier Mail in a shop, and seeing this headline glaring from the front page:

Disabling rorters: Planned Disability Pension Scheme overhaul could force thousands of Australians into workforce

You can read the Courier Mail's whole story (on-line version) here.

I guess you can tell what I'm objecting to here.  There's some kind of assumption that people on welfare are all part of a scam. We're taking advantage of the workers.  Even the Federal Treasurer Joe Hockey, when talking about the need for welfare reform said that Australian workers were working one month of every year to support welfare recipients.

Was that designed to make everyone with a job resent those of us who can't work?  My guess is yes, it was.

So what's the reality here?

I've worked part-time for a while since I began receiving the DSP. (And of course, the DSP was reduced accordingly for that period of time.)  Then my cognitive dysfunction (brain fog) became worse, and it reached a point where I just couldn't work.

I can write, because I do it at times when my mind is working. Having an actual job would require me to have a functioning brain at set times.... something I can't guarantee.  I can't even guarantee a functioning body at a set time.

In a sense, I am doing very well. I did get approved for the DSP.

  I know of other lupies who have been refused DSP, even though their doctors have told them they can't work. They're left in limbo.  As far as their doctors are concerned, they're too disabled to work. As far as Centrelink is concerned, they haven't proved themselves disabled enough to stop work.  Some of them are going without their medication because they just can't afford it. Going without medication will mean they get sicker. Eventually that will lead to extra costs in the healthcare system - which will prove to be a false economy for the government.

I won't write a response to the report and send it in to my local member of parliament.  My brain just won't do anything that difficult any more. But I hope people who are healthier than I am will.


Further information.
ABC News: Blueprint for overhaul of welfare system recommends simplifying payments, extending income management.
Courier Mail: Disabling rorters: planned Disability Pension scheme overhaul could force thousands of Australians into the workforce.
Sydney Morning Herald: Thousands to lose Disability Support Pension under changes flagged by government.

Queensland Government gives $1.25 Million to Research

So thrilled when the following media release was forwarded on to me.

The State Government has given $1.25 million to an arthritis researcher who is working on Rheumatoid Arthritis (RA) and tuberculosis (TB).

Hopefully advances in understanding RA will also help people with lupus and other forms of arthritis.

Following on from the recent decision to join in with the rest of the country in Disability Services Australia, this government is starting to look like it might actually care. (Of course, there have also been cut-backs in Queensland Health, but we can't have everything.)

I'm reproducing the media release in full (not the kind of thing I used to do as a journalist) because this is something I think is quite important to all of us.

JOINT STATEMENT Premier The Honourable Campbell Newman Minister for Science, Information Technology, Innovation and the Arts The Honourable Ian Walker

Premier’s Science Fellow to help arthritis sufferers An expert on genes that increase the risk of common human diseases was today awarded the Queensland Premier’s top science prize. Professor Matthew Brown from the University of Queensland Diamantina Institute was awarded the prestigious $1.25 million Premier’s Science Fellowship to advance the diagnosis and treatment of rheumatoid arthritis and tuberculosis (TB). Premier Campbell Newman congratulated Professor Brown on his award and thanked him for his remarkable work that was positioning Queensland as a global leader in genetic research and diagnostic testing. “This Fellowship allows Professor Brown to progress his gene-mapping research in ways that will benefit not only our health but also Queensland industry,” Mr Newman said. “He already has three patents for tests to diagnose a related condition, ankylosing spondylitis (AS)—a severe type of arthritis affecting more than 80,000 Australians—and his genetic findings have led to trials of new treatments for AS.  “Over the next five years Professor Brown will use the fellowship to identify the genes underlying the causes of rheumatoid arthritis and tuberculosis and develop better diagnostic tests to screen for them.” Professor Brown said it was a great honour to win the Premier’s Science Fellowship. Professor Brown trained as a physician specialising in rheumatology but was unhappy with the limited treatments he could offer patients so he switched from clinical practice to researching the condition. “The techniques we are developing have real commercial possibilities and healthcare benefits. We expect to roll out affordable diagnostic tests within five years, paving the way for new treatments targeting the root cause of the diseases,” Professor Brown said. “Rheumatoid arthritis affects 2.5 per cent of Queenslanders and more than 513,000 Australians and there are no treatments to prevent the disease or induce remission.  “The increasing incidence of tuberculosis is also a concern, particularly the cases of multidrug resistant TB arriving in Queensland from Papua New Guinea and the Torres Strait islands.” The Queensland Government’s $1.25 million investment, which is matched by The University of Queensland, reinforces the government’s commitment to working with universities to support scientific research that delivers real benefits to the community. [ENDS] 16 May 2013

Budget Night

Here in Australia, it's Federal Budget night.  So I've been glued to the television, watching to see how the government's financial plan will affect lupies.

I'm not an economic analyst, and I don't have a crystal ball, so upfront let me say I don't know exactly how these things are going to affect us, but a few things in the Treasurer Wayne Swan's speech presenting the budget stood out to me as having a potential impact on us.

You can get the full details of the budget here.

The two big things for us, should be the establishment of DisabilityCare Australia, and the National Health Reform Agreement.

On the downside, a lot of health funding is being targeted especially at cancer research and care and treatment, so autoimmune diseases are the poor neighbours yet again. Hundreds of million of healthcare dollars will be specifically for cancers. (Mr Swan talked about his own experience with cancer. Maybe we need a senior politician to have their life threatened by lupus or another autoimmune disease.)

A potential downside for lupies who are still in the workforce, is that this budget will phase out the net medical expense tax offset (tax reductions for spending more than $2000 in the year on medical expenses.) At the same time, the point at which the Medicare Safety Net cuts in, increases from $1221.90 to $2000.

Relevant sections of Mr Swan's speech are included below:

DisabilityCare Australia

The Australian Government will provide $19.3 billion over seven years from 2012‑13 to roll out DisabilityCare Australia across the country. This brings this Government's total new investment in DisabilityCare Australia to $14.3 billion over the period.

This investment in DisabilityCare will ensure all Australians with significant and permanent disability get the support they need. This is compared to the current approach where limited funds are rationed and people who get funding often have to accept a one‑size‑fits all approach.

Rigorous assessments will be conducted to ensure funds are targeted where they are needed most.

Core principles

DisabilityCare Australia will look beyond immediate need, and will focus on what is required across a person's lifetime. At its core will be:

A Lifetime approach — as funding is long term and sustainable, people with disability will have peace of mind that the individualised support they receive will change as their needs change;

Choice and control — people choose how they get support and have control over when, where and how they receive it, including the option of managing their supports themselves;

Social and economic participation — overall life goals for participation will be a central focus of supports; and

Focus on early intervention —# the scheme will invest in people to maximise their independence.

Sustainable funding

From 1 July 2014 the Government will raise the Medicare levy by half a percentage point to provide a strong and enduring funding stream for DisabilityCare Australia.

This will raise $20.4 billion between 2014‑15 and 2018‑19, to be spent on DisabilityCare Australia. The States and Territories will also contribute to DisabilityCare Australia, and will be allocated $9.7 billion over ten years from the increase in Medicare levy revenue.

DisabilityCare Australia will be fully funded.

DisabilityCare Australia launch

DisabilityCare Australia will commence operations from July 2013 across four jurisdictions and from July 2014 in a further two jurisdictions.

Launch locations will be established in the Hunter region of New South Wales, the Barwon region of Victoria, in South Australia for young children and in Tasmania for young adults from July 2013, and in the Barkly region of the Northern Territory and the Australian Capital Territory from July 2014.

National roll out

The Australian Government is committed to the full national roll out of DisabilityCare Australia in 2018‑19.

The Government will provide funding of $11.7 billion to DisabilityCare Australia in 2019‑20, the first year after full national rollout.

New South Wales was the first jurisdiction to commit to full scheme, followed by South Australia, the Australian Capital Territory, Tasmania, Victoria, Queensland and the Northern Territory.

The roll out of DisabilityCare Australia in these jurisdictions will cover around 90 per cent of the total Australian population.

The Government will continue to work with Western Australia to achieve national coverage by the end of 2018‑19.

The Government has taken action to address the challenges facing our health care system including an ageing population and rising health care costs.

Access to new medicines

We are investing a further $691 million over five years in new medicines in the PBS, including ground-breaking drugs for the treatment of chronic nerve pain, chronic hepatitis C and Parkinson's disease.

The Government has realised savings from the price disclosure reforms to the Pharmaceutical Benefits Scheme (PBS) agreed with industry in 2010. This has increased capacity to fund new and innovative drugs.

Better healthcare

The Government is investing a further $2.2 billion in the Medicare Benefits Schedule across five years with a higher than expected number of Australians visiting doctors. In addition a further $33.8 million is being invested into the General Practice Rural Incentive program in 2013‑14 to encourage medical practitioners to move to regional and remote communities.

An additional $2.2 billion over four years will go to assisting individuals and families to meet the cost of private health insurance through the private health insurance rebate. A further 120,000 people have taken up private health insurance cover from July to December last year

In 2012, the Government announced funding of $4.1 billion to improve access to dental services and boost the dental workforce, including $2.7 billion for a Child Dental Benefits SchemeGrow up Smiling.

Historic national health reform

In 2011, the Government and all States and Territories signed the historic $16.4 billionNational Health Reform Agreement. These reforms are critical to preserving Medicare and universal healthcare in Australia.

Improving cancer care

In this Budget, the Government is investing a further $226 million to deliver world leading cancer care for Australians.

The Budget provides $18.5 million over four years to fund the new Australian Prostate Cancer Research Centre, as well as support the two existing Research Centres.

The Budget delivers $42.1 million over four years in funding for bone marrow transplants and for the Youth Cancer Network program run by CanTeen, providing access to life-saving medical procedures and necessary support services for people living with cancer.

The Government will also invest $5.9 million over four years to improve the treatment and outcomes for people affected by lung cancer.

Recognising that smoking is a major cause of cancer, the Government has taken ground-breaking steps to introduce plain packaging of tobacco products. This Budget includes funding for the enforcement of plain packaging.

Early detection

The Government has also committed $92.2 million over four years to expand the target age range for the BreastScreen Australia Program and to continue funding the processing of Pap smears for early detection of cervical cancer.

Bowel cancer screening will also be funded with an additional $16.1 million over four years, which builds on previous investments in this area.

An additional $29.6 million in 2012‑13 and 2013‑14 will be provided to support the dispensing of chemotherapy medicines to ensure the supply of these drugs to patients.

Improvements in cancer care will also flow from additional funding for national cancer data collection which started in 2009‑10. These initiatives build on the $1.1 billion invested by the National Health and Medical Research Council in cancer research since 2007.

Reference: 2013-14 Commonwealth Budget http://www.budget.gov.au/2013-14/index.htm