The art of dependency
The NDIS promised choice and control
When I was 18 and my disability had progressed to the stage where I could no longer push myself in a manual wheelchair, a man in a van brought me an electric wheelchair. Actually, it was more like a bulky three-wheeled scooter. He slapped a sticker with a serial number on the plastic orange bonnet that covered the front wheel. He told me that it was the property of the state and should only be driven on covered surfaces.
Oh how I loved it the moment I sat in the chair and pressed Go. All the worry and the million steps between my destination and how I would get there disappeared. I couldn’t help laughing, zooming along, starting and stopping with a flick of the lever, taking myself where I wanted. People might have thought I was delirious.
I was in first-year law at Monash University and lived in a student college across a seven-lane road from the campus. For the first six months, before I got my electric chair, I was on the constant lookout for people to push me in my manual chair. I had only enough strength in my arms to shift myself a few metres on smooth level ground. At about 8 am, I would position myself outside my room, waiting to nab some student coming down the corridor to push me to the dining hall. After gulping down breakfast, I would do the rounds, asking who was leaving for the university and whether they could push me on their way.
Once I was on campus, the tough part was finding someone to push me back to the college at the end of my classes. Mostly I relied on students from my latest class or passers-by. The college was often out of their way, and it could take them 30 minutes to walk there and back. Most of those I waylaid were kind and warm; one even asked me out. Some had another place they had to be. No worries, I said, I’ll ask someone else. But it became more difficult each time I had to approach someone else, and I grew more nervous and beggar-like each time I asked.
A rare few clearly felt put-upon. One of these surprised me, a slender woman with blow-waved hair whom I thought I recognised from a law class and saw as a peer. She would not look me in the eyes when I asked but immediately stepped behind me, grabbed the handles and started pushing. She let out an annoyed huff. I said, it sounds like you might be busy, that’s OK, I can ask someone else. But she kept on pushing, fast and, it seemed from the jerking and the huffing, furiously. Arriving at the college, she gave me one last shove, turned around and walked away without saying a word.
That electric wheelchair liberated me – as long as there were no steps in the way, and as long as it didn’t break down. But it did break down, often. It sometimes took weeks to fix. I dreaded facing the man from the state government agency. He would shake his head, warn me that a chair can only be replaced every seven years and say, What have you been doing with it? I did take it over grass, of course I did. And, yes, I rammed kerbs – it was the only way to get over them.
Every year, more motor neurones died, my muscles wasted, my breathing weakened. With each part of my body that froze, the more my electric chair and other equipment would loom, needed, vital. An anxiety grew in me.
Six months after I got my electric chair, I applied to an international host program. I underplayed my disability and didn’t mention I used a wheelchair. A host family in Germany and another in France invited me to stay. I took only the manual wheelchair, leaving the electric chair behind. On seeing me in a wheelchair, the host in Stuttgart still took me in, but the one in Grenoble withdrew. I was left skint, without any supports and with no place to go. It was the position I feared. It was also the position I had put myself into. My lone travels began.
Three years later, back in Australia, I started to go out with David*. He was able-bodied. There was a beach we had discovered with high tides that flowed over the sand, making it firm enough to take my wheelchair. One hot, still afternoon, we were dismayed to find our usually bare beach teeming with people. We weaved our way to a vacant patch of sand, and he spread out our towels and lifted me down from my wheelchair. Too quickly, he let go of me and I nearly toppled backwards. We were out of kilter, aware of all the surrounding eyes on us. Without telling me what he was doing, he pushed my empty wheelchair to the edge of the sand, hid it behind a shrub, and returned to lie down next to me.
Later I asked, Why did you do that, are you ashamed of me being disabled? And he said, I was just putting it out of the way, it was none of their business. Right there and then, though, I said nothing. I wanted only to lie on that crowded beach, one body among many.
With David around, I did not have to worry about how I could get to the toilet next, or whether I had enough energy to pull a dress off over my head, or that I might fall transferring from my electric chair. Not only that, he took me bushwalking on his back. Together we climbed mountains! We were in love. Still, I worried that I needed him more than he needed me.
I told myself that he would come to his senses eventually. It would be natural for him to regret that he had not chosen a woman who was vigorous and able, and only duty and pity would make him stay with me. He would then deserve those looks he only got from people when he was with me, the ones we laughed about, those “what a good Samaritan you are” looks.
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 25 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 16-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 65 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% to Australia’s GDP.
Fifteen minutes have passed on hold. Last time I waited for 45 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 12 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 a 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 co-operated 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 on 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, there 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.
At the heart of the NDIS is the Australian goal of the fair go. The insurance model and the legislation are underpinned by this goal. If we stay true to this, the structures and the attitudes that disadvantage people with disabilities can be transformed. The mistakes in the implementation of the NDIS can be righted. The first step to bringing the NDIS back on course is to be aware of the deeply entrenched biases that lead people to act in ways that disregard the dignity and equal value of people with disabilities.
When I was young, I decided that I would kill myself when my disability progressed to an intolerable stage. I imagined that point would be when I was dependent on help to get out of bed, go to the toilet, shower and dress myself. I’m at that point now. Each time I lose more of my physical strength, first I object, I grieve, and then, like most people do, I adapt. I have no less love, interests and passion in my life. The sun is still marvellous, and the sky blue. Like everyone else, I have my own goals, successes and struggles. Life is normal.
At least it feels normal, until I see people’s eyes on me and feel their pity, their admiration that I go on living, their horror, or their thankfulness that they are not me. The thing that they want to deny is that they are me. This stops empathy, and makes it easy for people to treat us with less dignity than they would like for themselves. Dependency or vulnerability is inherent to our humanity. We are born and usually die dependent, and we live with the ever-present possibility of injury or disability.
When I was 18, I was nearly overwhelmed by the anxiety of becoming increasingly disabled, and being dependent and without supports. This fear drove me to throw myself into a situation where I was powerless. I travelled in Europe and Africa alone, without any supports. I was spurred on to experience everything, not miss out, never miss out, no matter how hard it was.
Paradoxically, by experiencing my own helplessness, the way was opened to discovering my inherent worth and power. I remember Kamanja, a man I met in Kenya. He was one of many people who came my way and helped me through, who pushed me in my wheelchair and carried me when I was at a low ebb and battered. I started to thank him. He held out his hand for me to stop. “I help you because you need help,” he said.
* Names have been changed. Micheline Lee would like to acknowledge the contribution of the Australia Council for the Arts and the Australian Government Research Training Program Scholarship to this essay.