The Best Australian Essays 2017

by Anna Goldsworthy

  I think we should be more open and go out with other people as well, I said. He flinched. Hurt showed on his face. No, he said. That’s not how I want to be with you. My heart was thankful but I had to get away. This time I travelled for two months in Kenya and Tanzania on my own, again taking just the manual chair. There was no reason why I chose those African countries except that they were unknown to me and travel would be hard.

  *

  That was about twenty-five years ago. Each year my muscles have atrophied further. Now I have barely enough physical strength to hold a book. I became a lawyer. I was also an artist, but when my arms became too weak to handle a brush I took up writing. David is a writer too, as well as a university lecturer. Today he’s at work. I’m at home, taking the day off work, because there are problems with my disability supports that need sorting.

  Our sixteen-year-old son bursts in, back from school. He gives me a hug, stuffs his face with whatever food is close to hand, grabs his mountain bike and heads out the door again. It’s two hours before the winter dark and he’s got to get to the bike trail, the one he and his mates dug with spades into a hidden-away side of a hill, because the jumps on the council-made trail were not big enough, and the turns not crazy enough. He asks me if I want to come and watch but I tell him I have to make a call.

  I ring the National Disability Insurance Scheme call line. An automated voice comes on and then the hold music. The NDIS was introduced to replace a disability service system that was widely recognised as underfunded, unfair and inefficient. On completion in 2019, it will provide individualised funding to 475,000 persons under the age of sixty-five who have permanent and significant disabilities. The funding can be used for disability-related supports such as personal care, access to the community, therapy services and equipment. After a trial period, the NDIS started rolling out last year by locality and I was one of the first to transition to it. Over the years I have become what is called in disability services a high-needs client, or a ‘complex participant’, in the latest language of the NDIS.

  I joined the chorus of people with disabilities who fought for the introduction of the NDIS. We raised awareness of how people with disabilities have been excluded from a society whose physical and social structures are designed for the non-disabled person. In Australia, people with disabilities have lower levels of income and employment, and less access to health care and housing. Many are isolated and segregated, and prevented from using their skills and talents to benefit their communities. Some remain vulnerable to exploitation and abuse. Australia is ranked lowest of the OECD nations for the relative income of people with disabilities. We called for the supports that people with disabilities need to participate equally in life, supports that would give us control and choice.

  The response was unprecedented, the goodwill from Australians heartwarming. I remember thinking that we had made it to the mainstream consciousness when I saw Bill Shorten, who fought for the trapped miners at Beaconsfield, lead our fight. It should have been Rhonda Galbally in the news, of course, or one of the other people with disabilities who spearheaded the cause. But we were grateful for all the support we could get.

  The NDIS became law with bipartisan support. It promised to provide choice and control of services to the person using the services. Funding would go to the individual to buy the supports they chose, rather than to the service provider in block form. There would be no more one-size-fits-all supports, no more budgets that varied depending on the economy and the requirements of other portfolios. Replacing all that would be an insurance approach based on need, which recognised that early investments would reap long-term benefits. At full operation, disability services funding would be more than doubled, to $22 billion a year (almost the cost of Medicare). The Productivity Commission found in 2011 that the benefits of the NDIS would outweigh the costs, in terms of community integration, employment and efficiently delivered services, and would add almost 1 per cent to Australia’s GDP.

  Fifteen minutes have passed on hold. Last time I waited for forty-five minutes. I get out the plan, the NDIS-generated document that lists what disability services I have been given. I don’t understand this document. Previous disability services had problems, but this is the first time I have not been able to understand the care plan.

  *

  About twelve years ago, when the help I needed became too much for David to do alone, I filled in the forms, obtained the required occupational therapy and medical reports, and applied to the relevant Victorian department for personal care funding. An official told me there was a long waiting list and that someone already on the scheme would have to die or go into hospital for a place to become available. I was referred to my local council’s disability services. Again I went through a long process filling in forms, and obtaining more OT reports. The council started providing me with a carer two hours per week at a subsidised rate.

  Gradually the hours increased. At first David and I had fights about having these carers in our home. David especially hated the intrusion but we could not have kept up our jobs and our health without this help, so we adapted. There was little flexibility in the service. We could not choose our carers or, often, the times they would come. My son was five at the time, and the council would not provide the disability support I needed to care for him. Another time it insisted that two carers were required to operate a hoist to lift me although I clearly only needed one. Then I was told the funding would not stretch to two.

  After about a year on the waiting list, the Victorian department accepted me on its program. Eventually, it offered direct payments so recipients could pay for the services with funding deposited into their own accounts.

  I enjoyed the autonomy under the evolved Victorian program. However, as I grew weaker the funding was insufficient to pay for the additional personal care that I needed. Three years ago, I applied for more funding. The pressure on David was too much, my ability to maintain my job was being compromised. I was having to skip showers, I couldn’t get to the toilet enough, and I had developed a bladder infection. But the budget wasn’t there, and all the disabilities officer could do was add me to the waiting list.

  Some people on the waiting list did not even have any services. Some were forced to live at home while waiting, depending on their ageing parents for care. An acquaintance of mine only had enough funds for a carer to help her in and out of bed each day. Sometimes she used the funds to pay for a carer to help take her out, and would be forced to spend the night sleeping in her wheelchair.

  My reliance on disability equipment increased. My house is full of it – electric, travel and manual wheelchairs, ramps, hoists, lifting beds, braces, commodes and respiratory aids. I also need modifications to my car, home and office, since everything is designed for the average able-bodied person. Something is always breaking down and needing to be fixed. Because the market is small, everything is expensive – at least two or three times the price you would expect for a comparable mainstream item – and I can’t pay for it all myself. There have been many times I wished I could, however, because the hoops I have had to jump through are humiliating and stressful, wasting the time and energy I need to get on with life and my job.

  Many people with disabilities experience far greater challenges. I have a supportive partner, am educated and employed, and can generally speak up for myself. How can people deal with the system if they don’t have all that? Because of communication difficulties or the biases of the institutions providing their care, these people are less likely to be heard or believed. Some have suffered sexual or violent abuse at the hands of carers. Even where complaints were made, the abuse continued because service providers failed to act.

  Thirty minutes have passed on hold. I pick up the plan again. When an NDIS officer answers, I will ask them to interpret the bureaucratese for me. It is humiliating. I can’t believe the NDIS is treating plans like contracts, when we are not even given the chance to agree to them. The NDIS promised us choice and
control, but if a disability support you need is not listed in the plan, you have to go through a lengthy review and make a whole new plan.

  *

  My entry into the NDIS started with a phone call in May 2016 from an NDIS assessor called Nicole. She said I had to do a screening assessment. She would guide me through a questionnaire about my disability that would take about an hour. I questioned the need for this when reams of current information about me were already available on my Victorian department file. Everyone, she said, has to do this questionnaire to get on the NDIS. Assessments depress me, especially unnecessary ones. I spend all my energy focusing on what I can do and suddenly I’m called to define my deficits. It brings to mind the young male physio who assessed my spine. I thought I was looking rather fit in my bathers. He took one look at me and casually said, Yep, the scoliosis sticks out like dogs’ balls. But it was the NDIS and I cooperated because I wanted it to work.

  Nicole read out the questions one after the other:

  Can you stand?

  Can you communicate?

  Can you feed yourself?

  Was there anything you couldn’t do in the last two weeks?

  How would you rate your quality of life?

  The questions went on and on.

  Several times I asked her the purpose of the question, or its context. I’m just reading them out, Nicole said. Everybody gets the same questions. At the end of the interview I asked her for a copy. She said that wasn’t possible. As a government agency, I said, under information privacy laws, you are required to give me access to my answers as recorded on the form. I’ll consult my manager, she said. Later she told me again it wasn’t possible.

  After six months without word, an NDIS officer called Deirdre rang. She said that the results from my screening assessment had concluded that my disability needs were minimal. However, she had checked my medical and disability information on the Victorian department file, and realised this conclusion was wrong. Deirdre told me I would have to repeat parts of the screening assessment. In answer to my query, she explained that other participants also had to do this, because the initial assessors did not have the training to properly interpret the questions.

  She revisited the questions from the screening assessment. You said you had no difficulties managing all household responsibilities, she said. Is that really correct? What the question really meant was, can you actually physically do the housework yourself? No, I said, I mainly supervise. She said, OK, that’s what I thought. It wasn’t properly interpreted for you. I will change the answer.

  She went on. According to the earlier assessment, she said, you had no difficulties socialising. How often do you go out socially? Maybe once in four weeks, I answered, feeling ashamed. Why don’t you go out more often? she asked. I said, I’m often sore from sitting, or too tired from work. It’s difficult to organise, and friends’ houses, transport and many places aren’t accessible. I felt even worse. Right, I’ll change that answer too, she said. I told her I must have thought at the initial interview that the question was about my social skills!

  The next question was about personal hygiene. In the earlier assessment, you said you had no difficulties managing your hygiene, she began. Before she had the chance to start interpreting the question, I blurted out, I know now you’re going to say that the question was about whether I could shower myself – I must have thought she was asking me if I was dirty! I started laughing, and when I tried to stop, more sniggers erupted. Deirdre waited patiently. She seemed like a nice woman trying hard to do a good job, and perhaps if we had been face to face she would have seen the joke of it too.

  We continued through the questions. At the end, she added up the new scores. Before you got 55.5 out of 100, or minimal needs, she said. Now you have 88.8 – complex needs!

  Then came the drafting of my plan. A face-to-face meeting was not necessary or possible, Deirdre said. The plan would go to a delegate. If it followed all the rules and didn’t generate a review, it would be approved. What rules? I asked. She told me each disability support I asked for had to be reasonable and necessary, it had to be linked to a goal, it couldn’t be a support that was seen as medical or education-related, and it should come under a line item. I asked what a line item was. She said there was an NDIS list of line items that tells you what supports will be funded. I asked for a copy of this. She said she wasn’t allowed to give me a copy. Only the NDIS could see this. Do they think we will look at it like a smorgasbord and get greedy?

  I asked Deirdre to add to my plan a whole list of equipment needs. Unless it comes under urgent unmet need, it’s not going to be included, she said. I’m not saying things won’t get funded. Just that government wants to roll out the scheme on schedule, so things that are not urgent will be looked at on review.

  Finally she told me I would not be able to see the plan beforehand. Instead I would receive a hard copy of my plan in the mail once it was approved. I drew in my breath. It is not my plan if I haven’t had the chance to sign off on it or even see it! The IT system won’t allow it, she said. I told her I had no idea what was going on and the least I could do was to see what she was writing in my plan. She was sorry but it was the system. By the end I had hardly any voice left. Deirdre was hoarse and coughing. She must have done this hundreds of times.

  *

  The front door crashes open, startling me. It’s my son. His face is crimson. Mum, you have to come! You have to see the sick as jumps! Sorry, hon, I’ll come as soon as I get off the phone, I say. He rushes out again and the classical hold music loops on. Forty minutes have passed and I’m still on hold.

  I’m trying to understand why my life has seemed out of control since I entered the NDIS. Normally, it takes me at least three times as long and an orchestration of carers and equipment to do the daily things that most people do without thinking – like get out of bed, go to the bathroom or catch a bus. Along with my job and family life, these demands mean that I am always time-stressed. I had hoped that the NDIS would free up some time for me, with its promise of more-efficient and tailored services. Instead, the bureaucratese and problematic administration of the new system have created greater pressure and made it difficult for me to keep up with my work.

  One month before my NDIS plan commenced, funding from my old disability services ceased. My carers couldn’t be paid. When my plan did start, I still couldn’t access the funding, because of technical problems with the NDIS website portal and my plan manager’s failure to make payments. My carers were not paid for up to three months. Unable to afford the long payment delays, one of them could not continue working for me. It then took months to find a new carer, because the growth of the workforce has not kept up with the increase in NDIS demand.

  Also, my plan had omitted my equipment needs. This meant I couldn’t purchase aids I needed or access funds for repairs or maintenance. I am now required to have my plan reviewed to add the equipment I need. Because the NDIS processes are so complex and obscure, I need to employ a professional called a Support Coordinator under the scheme to interpret the plan and the review rules for me. My Support Coordinator told me of one person who had to have a review because there was a typo in her plan. Another had to have a review because she changed her job. The review process could take around three months, or it could go on and on.

  Before you can do anything under the NDIS, it seems, you need an OT’s report. You are not trusted to make basic decisions on your own. I was told I needed OT approval just to replace the batteries of my electric wheelchair. Another participant reported that a $25 kettle tipper ended up costing about $100 because an OT’s report was required.

  So much waste occurs where the system is overly bureaucratic and its rules are not clear or reasonable. No real opportunity is given for choice and control, and we are forced to rely on the professionals and administrators.

  From reports, the main people who are happy with the NDIS are those who had no access to disability services before. For others, ther
e are improvements such as increased funding and more supports than previously. Each day, however, more are speaking out about problems with the NDIS. Governments are rushing into the privatisation of disability services without adequate quality assurance. They are putting at risk the safety of the most vulnerable. Services that were formerly funded are now being refused on narrow interpretations of what is ‘reasonable and necessary’. Staff administering the scheme have had inadequate training. Payments to carers have been stopped as a result of IT problems. And one of the most common sources of complaint: the plans that we did not have the chance to look at or agree to.

  I am wondering what has happened to the voice of people with disabilities that called for equality, choice and control. Now the rhetoric is dominated by financial sustainability. It is ironic that the administrators of the NDIS whip out the language of meeting targets and budgetary bottom lines to justify their implementation of the scheme, when it is their mistakes that are causing waste.

  I don’t think it’s just teething issues. It’s symptomatic of underlying attitudes that haven’t changed. Transformation still has to occur at a cultural level. We come from a long tradition of disability services being delivered as welfare or charity. In this tradition, it’s acceptable to apply different standards to people with disabilities. For instance, we expect insurance cover to be given on terms that are understood and agreed to. Why do we think it’s acceptable for the NDIS plans to be made without the participants even getting the chance to view them beforehand?

  The Productivity Commission’s June 2017 position paper on NDIS costs has many laudable recommendations. I was, however, concerned by the statement that ‘the ultimate cap – and test of financial sustainability – is taxpayers’ continuing willingness to pay for it’. This seems like a harking back to the welfare and charity days. The legislation that created the NDIS recognises the right to disability services that will enable equal participation. It is not a gift that can be offered or taken away.