Open letter to John Howard: Walk a mile in our shoes

Dear John,

I’m writing on behalf of all currently disabled people, and for those who will suffer the onslaught of time and ill fortune. I’m asking you to seriously consider the following matters when your party frames legislation affecting us.

I speak from a unique perspective, as an occupational therapist with 15 years experience in assessing and assisting people with disabilities. I have also suffered from Chronic Fatigue Syndrome for 12 years, which seriously impairs my ability to work. I am on the disability support pension (DSP) and I work, even though it's only 10-15 hours per week.

My job is very interesting. I assess people who are applying for DSP, and frankly while there are some people genuinely trying to rort the system (my estimate is around 5 per cent), the majority are hard-working, civic minded Australians, seeking DSP as a last resort. Many are only applying after being advised to do so by Centrelink.

As you sit and decide our futures, I ask you to consider these problems in your plan. If you can resolve these issues, I fully support your intentions to help disabled people find meaningful and productive work.

The definition of work

In assessing someone as able to work 15 hours, do you consider productivity? Many people with disability (PWDs) are able work. However they are slower, less efficient and less accurate. They cannot work as effectively as they once did. This is not a character defect. It is simply part of their medical condition. They can still produce quality work. It just takes longer.

Even if they do gain employment, the laws of profitability dictate they will earn less than a normal worker. According to the Productivity Commission, when working, PWDs earn an average of 20 per cent less. The productivity gains your party has pushed for have raised the bar so high many of us are unable to compete. If we do work, we often have to work 15 hours to earn 10 hours pay.

These productivity gains are actually a good thing as they create an economic climate where it is more feasible for us to work, but only if we are given the right support.

Rest and recovery

Many of us require intermittent work. We need frequent rests or changes of posture. So even if we’re at work for six to eight hours, we may only be “working” for four to six hours, or less. How many work places provide accessible places to rest and recover? How many workplaces will even tolerate someone who needs frequent breaks?

PWDs need employment where they can adjust the work to suit their needs, not be pressured to conform to another’s demands. This eliminates a huge proportion of available jobs. The irony is that for many, self-employment is a viable option. However the New Enterprise Initiative Scheme is only available to people who can do an 8 week, full-time course. I have approached the government about this problem previously with no response.

Piece Work

In some ways, home-based piecework is the ideal; if the person’s physical, emotional and mental capacities allow it. But again the “efficiency” factor means they will be earning less than other workers.

Self-employment

Self-employment is a good option too, for it offers a degree of control. Unfortunately self-employment means you are responsible for everything such as reception and marketing, particularly in the start up phase of a small business. This requires up to 50 per cent of time spent in unpaid work. Will this be considered in assessing the 15 hours?

Leaving Home

Of course you could argue that PWD’s should get a “real job”, but this adds the physical and financial burden of travel. So what they gain working for someone else, they lose by commuting. Often the cost of this is pain and further disability.

Why don’t they move closer?

Even if it was possible to live close to work, moving home is a chore that makes the able-bodied shudder. For PWDs, moving means finding a new network of health professionals they can trust. For someone with my condition, this is quite a challenge, as many doctors don’t even believe Chronic Fatigue Syndrome is a real illness. It means leaving supportive neighbours and family. It means having to educate a whole new batch of carers or services to your condition and needs.

Unemployment v Disability

It is about time that this Government put the “disability bludger” myth into its social policy wastebasket. PWDs are not dole bludgers. For the record, many “dole bludgers” aren’t dole bludgers either, but that is another story.

Let’s be realistic John. For a disabled person to escape poverty, they need to be able to earn an hourly rate of twice the average person. The statistics show that for the vast majority this is not achievable, and no training program will resolve that.

A balanced life

Of course this is happening just as the government is realising that our society’s approach to work is unbalanced. More able-bodied people are realising that life needs to be balanced. The union ideal of reasonable time for work, rest and play has been eroded by ridiculous commutes and the escalation of unpaid overtime.

In this context, is it fair to demand that PWDs allocate a much higher percentage of their available time and energy to work? While I respect every person’s right to make that choice, it is close to a violation of human rights to insist that a disabled person must place work above everything else. I spent three years where my life was going to work, and spending the rest of my life in bed, at the advice of a Professor of Immunology. My employer (a public hospital) refused to make the concessions needed for me to continue working. I almost lost my marriage and family until I chose to ignore the advice of this esteemed professional. Interestingly I started to recover a little as well.

I have heard this story over and over, from DSP applicants. They made the choice to give up full-time work because they wanted to save their families. They were forced into unemployment by employers who couldn’t or wouldn’t make the concessions they needed.

The time that a disabled person can allocate to work must be calculated after reasonable allowance has been made for sleep, self-care, family and leisure. What’s more, PWDs have an extra burden of time that their able bodied counterparts don’t. Given our poverty, and reduced earning capacity, we are not able to pay someone to do the domestic work that we are unable to do, or that aggravates our conditions. The availability of Home Care services, and the eligibility criteria are a joke.

Treatment programs, whether they are home, hospital or community centre based all require extra time and energy. Even the task of “remaining fit” which the Government is advocating for all people, extracts a higher toll from the disabled.

Costs

Of course, the Government assures us that these changes are not cost cutting measures, but are for the good of disabled people. Yet your own media releases mention “the cause for alarm is the escalating number of people on DSP, and the cost of this to society”. The new guidelines will simply transfer those least able to compete in a productivity-oriented society from DSP onto Newstart.

They risk losing concessions on utilities, car registration (vital if you can’t use public transport) and medicines. Many conditions can only be treated with medicines and supplements that are unavailable under the Pharmaceutical Benefit Scheme. I note the recent rise in the so-called “safety net”.

It is clear that disability is the biggest factor in sucking capable people into poverty. PWDs have an average income that is 44 per cent of able-bodied people. The lucky country is the 7th worst in the OECD!

Mutual obligation - for whom?

Mutual obligation has become a buzzword. Like most buzzwords, government enthusiasm is no guarantee of substance. I actually support the proposal to assist disabled people to find work. Most people I’ve assessed for DSP tell me they want to work. They also tell me they have given up after the services available to them have failed.

In my case, despite having a degree, experience, and being motivated, the Commonwealth Rehabilitation Service told me “we cannot help you find work”, and “there’s nothing we can do for you.” Job Network did absolutely nothing. I even applied for a Job Network position but was rejected as being “not suitable” because I was seeking part-time work.

The problem is that employers, including government agencies need incentives to employ disabled people. HR “experts” and “bosses” need to be a lot more creative in their thinking about how work can be allocated and controlled. Most are too lazy or unimaginative to think about how they could employ a disabled applicant.

The vast majority of advertised jobs are full-time, and employers use convenience as an excuse, refusing to even consider applicants who could do the job but only in a part-time or job-share situation. The Government’s own record in this area is appalling. According to the Human Rights and Equal Opportunity Commission, employment of PWDs in the government Sector in the last 10 years has dropped from 5.8 per cent to 3.8 per cent. That’s a 30 per cent decline. I call on the Government to lead by example in taking affirmative action for people on DSP.

So John, yes, we do want to work. We want to be paid a fair rate for the work we can do. We want services that really can help. We want to live balanced lives. We don’t want to be forced to jump through meaningless hoops, which aggravate our pain, fatigue and depression. We don’t want to make you happy while watching everything that is important in life like our families and relationships disintegrate. We want recognition for the extra costs that living with a disability imposes on us. We are sick of poverty, yet your own enquiry tells us that 60,000 of the most disadvantaged people in Australia will be worse off under your plans to “help” us.

A hidden tragedy

The tragedy of these changes is that they are completely unnecessary. The financial benefits of DSP automatically decrease rapidly as recipients earn income. For instance, even working as little as 10 hours per week, my benefit drops to about $20. At 15 hours per week I would be receiving nothing. This of course varies depending on what hourly rate you can attract.

The 15-hour threshold is a major disincentive. At present, I personally am inspired to test my ability, knowing there is a significant margin. With the new changes, the instant I cross the 15-hour threshold, I lose the substantial concessions that make living in poverty barely manageable. You can feel the fear in disabled communities as you discuss this issue with them.

A fairer system would be to maintain the eligibility criteria at 30 hours. Compared to an able bodied person, this is still a 25-40 per cent impairment of functional capacity. The sliding benefit scale could be maintained. Ancillary benefits and concessions should be income tested, not “hours” tested.

None of this prevents the Government investing its healthy surplus in programs that really help. Things like:

• Employer incentives;
• Training bonuses;
• Affirmative action programs;
• Better salary packages for skilled job network and other employment consultants would help attract people with the skills to assist disabled people in overcoming their significant disadvantages in the open job market;
• Small business start up assistance;
• Establishing disability focused job co-operatives;
• Domestic and home maintenance assistance;
• Relationship counselling; and
• Coaching and mentoring programs.

Interestingly, Kim Beazley’s view on disability changed significantly when he experienced it, albeit temporarily. My dearest wish is that you could spend 24 hours living the life that we face every day, for the rest of our lives. Perhaps then you might begin to understand.

Sincerely
 
Ken Davis