Illness is part of our lives. When people get sick, we bring flowers and soup, wishing them well. Yet our public policies work in the opposite way, unable to respond in a supportive or understanding way.
The policy settings for sick people seem to operate as though they are yelling 'get up and stop slacking off in bed', instead of the far more usual 'look after yourself' that we tell our sick friends. Policies around income support, disability and health all combine to make being sick incredibly hard, sapping savings and making being sick even more stressful and difficult than it is already.
I first got sick when I was 19. I am now in my 40s and still sick. I have had periods of time in total remission, and others when I have been hospitalised for weeks on end. I have tried and taken myriad medications and treatments, and live with a now permanent degree of disability. The various public systems that I have engaged with over this time have become increasingly adversarial, in particular the income support system. The gaps between systems are getting wider, and the expenses higher.
Falling between these gaps are people who are sick, disabled, struggling. Policies are increasingly designed to be punitive and harsh, with little room for anyone's human frailties, let alone to acknowledge the real financial costs of being sick.
The basic income support payment for people who are deemed disabled is the disability support pension (DSP). This payment has undergone significant change over the last few years, leaving many people who need it trying to survive on the much lower Newstart payment. Newstart is now so low that people who rely on it have no rental properties they can afford in most capital cities in Australia. People are missing out on essentials, like food and medical treatment, because the payment is totally inadequate.
In 2011, the then ALP federal government tightened the so-called 'impairment' tables for eligibility for the DSP, and changed the work test to exclude people who could work between 15 and 30 hours per week. This narrowed the scope of the DSP to those who could work less than 15 hours per week. This drew arbitrary lines around who was sick and who wasn't; who needed that extra money each fortnight, and who didn't.
Before this, the DSP contained some flexibility to accommodate fluctuating conditions, and to ensure that people with chronic illnesses and changeable disabilities could move in and out of the paid workforce.
"Raising the rate of Newstart is not just about making sure that people out of paid work can eat and put a roof over their heads, but also will say to the increasing number of sick and/or disabled people relying on Newstart that yes, we do care about you."
I ended up on the DSP in the early 1990s. I had been trying to rely on Austudy and finding it wholly inadequate to meet the high costs of medication, while trying to pay the same rent and food bills of my non-disabled peers. After my fourth hospital admission in 18 months, the social worker insisted I apply for the DSP, and I was accepted. I stayed on the DSP for the next decade.
As my health stabilised, I also found regular part-time work that paid better, was more reliable and my employers were prepared to make the adaptations I needed. The amount of DSP I received dropped as my wages grew — often down to $50 a fortnight. When I got sick again and had to stop work, which was the pattern of my disability for the next decade, the DSP was there to catch me, so I could pay my rent and afford bills, food and medication.
Because I worked at all, I was subject to regular stringent reviews of my eligibility that were stressful and difficult — each time, the verdict was the same. I was still sick, but had found flexible work at the limit of my capabilities. The DSP system back then contained that flexibility, meaning I wasn't penalised for finding work when I could, and was able to have the safety net to catch me when my illness returned, which it did, over and over again, with reliable devastation.
For people coming into the system now, getting on the DSP is much more difficult. Alongside the changes to the impairment tables, there have also been the additional medical reviews of over 90,000 people which have combined to cause a steep decline in the number of people getting on the DSP. There are now 62,882 fewer people on the DSP than there were in December 2013. (Figures are from the Parliamentary Budget Office report into the DSP, and calculations based on DSS Demographic data.)
This huge decline in the number of people eligible for the DSP means that up to 25 per cent of people on Newstart now have a disability or a chronic illness and up to 75 per cent of people claiming DSP being rejected.
The number of people who are deemed to have a 'partial capacity to work' continues to grow, at the same time that the number of people on the DSP has fallen. The number of people who are sick is the same, but many are now expected to try to survive on $170 less per week. (Source: Author calculations from DSS Demographic data.)
Being sick and/or disabled* comes with its own costs, which is what the DSP recognises. This could be increased medication, or accessing taxis because public transport isn't accessible, or the cost of allied health.
A recent survey by the Consumer Health Forum found that 'More than a third of respondents with chronic conditions like multiple sclerosis reported out of pocket costs of more than $10,000.' For many people 'living with a disability may cost an additional several thousand dollars per year'.
These costs are the direct result of being sick and/or disabled and can contribute to the high levels of poverty that many people experience. One study across ten countries found that 'to achieve a reasonable standard of living, individuals who live in households with persons with disabilities must outlay additional resources relative to the population without disability'.
At the same time, finding a work place that is flexible and will accommodate illness or disability is hard, with the unemployment rates for people with disability at much higher rates than their non-disabled peers.
Cracking down on income support payments is done in the name of 'getting people into work', yet the data shows this is clearly not happening. Only three per cent of those who have left the DSP in the last few years have done so because they found work.
What has happened is that people who are sick and/or disabled have been plunged into more extreme poverty, and are now expected to make ends meet on $538.80 per fortnight. They are also expected to participate in the various so-called 'mutual obligation' activities, with few exceptions.
Raising the rate of Newstart is not just about making sure that people out of paid work can eat and put a roof over their heads, but also will say to the increasing number of sick and/or disabled people relying on Newstart that yes, we do care about you, and want you to feel better.
*A note on language: not everyone who is sick is disabled, and not everyone who is disabled is sick.
El Gibbs is a freelance writer specialising in the area of disability and social services and has over 15 years experience in the community and NFP sector, as well as politics. Find her on Twitter @bluntshovels. El would like to thank Pas Forgoine for discussing this piece with her, and for the suggestion to write it.