My focus is mental illness

In 2004, I became a Board member of the Mental Illness Fellowship of Australia (MIFA). This is a national federation of community-based NGOs. The Presidents and their CEOs were a great bunch of people with a common objective—better services and community acceptance for people with mental illness anywhere in Australia. It had been more than 10 years since I was bundled out of leading mental health reforms in South Australia, but the juice still ran strongly in me on this one. It was unfinished business, and probably always will be.

In 2009 the national CEO of MIFA was rocked by the suicide of her son, who had finally given up the struggle against the ravages of schizophrenia. He had been remarkably well for a time, but the early warning signs were there; he knew another episode was on the way. It was too much to bear. He told her he loved her then went for a walk and jumped off a building. Margaret, working in the garden, stopped to think about the way he had spoken to her, suddenly realising it sounded like a farewell. He had mentioned the tall office block near her house before, so she hurried there. She found him, and cradled his broken body until the ambulance arrived. Although she handled the aftermath brilliantly, Margaret decided to take a back seat for a while, and resigned.

Which left MIFA looking for a CEO. Apart from MIFA and two other boards, I was busy earning a living with two jobs, one as CEO of a small privately-owned health company, and one working around Australia and New Zealand as a consultant. But I knew a day job at MIFA was the ideal place for me. It was a national role, and I had always wanted to work at that level. It was smack in the centre of my main passion, and I knew there was so much that could be achieved if I kept the job for a few years. It meant getting the best out of a consortium of partner organisations, the sort of work I had done several times before. And it involved a lot of traveling, which I have always loved. With Charmaine’s and my kids all largely independent; this was the time to take off to all parts of Australia; a chance to make a real difference.

There was a money problem; MIFA had a tiny budget. I offered to start on three days a week, at a very low rate, banking on continued consulting work for the rest of my income. With a partner who was a senior academic, and a small pension from my public servant days, we didn’t need much money anyway, which was a freedom to be enjoyed. The MIFA Board agreed within a few days, and I started in a role that turned out to be a perfect fit for me, better even than I had hoped for.

First I needed an off-sider. Susan had worked with me several times in the previous ten years, but she was currently based in Cairns. One phone call, and we were a team again, her also part-time but not fussed about it. She was a savant of information, and what she didn’t know she could dig up faster than anyone. A genius, who could digest a 200-page government report in a couple of hours, and give me the only things that mattered, in a dot-point summary that I could trust completely. And a no-nonsense woman with a sharp tongue who kept me grounded whenever I showed any signs of self-importance. Whatever I achieved in that job, she was half of it, but she absolutely refused to share the limelight. When it came time for her farewell a few years later, I asked her if she would make a little speech. She snapped back ‘I’d rather stick a fork in my eye.’ We worked so well together; I’m missing those days keenly as I write this.

Our job was to keep the impacts of severe mental health on the radar across Australia, and to influence policy and funding decisions wherever we could. Margaret had given me a legacy of many opened doors in Canberra, the national capital, and I worked hard to build on what she had started. I particularly liked the “Parliamentary Friends of Mental Illness’ that she had invented, and so did a couple of pharmaceutical companies who funded it generously. That became a vehicle to get people who were dealing with severe illnesses telling their story directly to politicians, their staff and bureaucrats. Choosing the best speakers there became our art form, because getting it right meant huge impact with the real decision-makers.

As for those top people, I just went for it. I had one-on-one meetings with all the relevant Ministers and heads of departments, and the other movers and shakers who lobbied them. They wanted one-page simplified summaries of issues, giving them a clear path to making a real difference that they could claim the credit for. There’s just no point in telling these people how awful it all is, if you can’t help them see a way to make a start on doing something useful. I also made sure I praised the good initiatives, and offered to work with them to make sure they were implemented well. Because our member organisations were all well-established, authentic voices of ‘lived experience’, I went to Canberra loaded with their service medals; accepted as an impartial, honest advisor, with good knowledge of the national picture, and with no axe to grind except helping people in desperate straits.

Not long after I started, the drug company that had been giving MIFA about $100,000 a year received legal advice that they were in breach of their industry code of conduct. By providing such a large proportion of our total income, they might be perceived to have undue influence. They reduced their grant to $10,000. Until that time, the member organisations had only been putting in small amounts, and MIFA now faced being wound up. I proposed they make a decision; either give a lot more, or give up the game of being a national advocate of any relevance. After very little debate, it was agreed that each member would give a percentage of their annual turnover to MIFA. That gave us a budget of nearly $250,000, which was more than I had suggested, partly because they wanted me to become full-time, at a better rate of pay. I was very happy to agree.

There were difficulties. Within a few months, one member organisation, as usual in these matters, the largest one, began grumbling about their share of the cost. They worried that they may have been hasty in not thinking through their capacity to lobby government on their own, without depending on a national body. In Australian federated bodies, these spats always seem to originate with tensions between the Victorian and the New South Wales people, and this one was no exception. With frequent visits to Board meetings in Melbourne and Sydney, I managed to keep both at the table for a year, but it was an increasing distraction from my core business of trying to make things better for people dealing with mental illness. When most of your debates are about internal politics, and not about your customers, any organisation is in big danger of losing its way. It was a bit bloody when the Victorians left, and it meant I had to spend more time finding other sources of funding, but I was actually relieved when they took their ball and went home. The other members were so pleased to see them go that they increased their contributions to MIFA to help close the funding gap. Their loyalty to each other, and support to me as CEO, was absolutely solid from then on.

The next couple of years were a buzz. I was invited to help the federal government design a new initiative that received about $500 million funding over four years. It laboured under the clumsy name ‘A federal program of coordinated care for people with severe and persistent mental illness’, which luckily morphed into ‘Partners in Recovery.’ That program has been an outstanding success, helping thousands of hard-to-reach people who can’t or won’t engage with what’s on offer. People living under bridges. People in jail. People hidden in family homes where parents consumed by shame had no idea what to do about their child’s relentless downward spiral. Partners in Recovery reached out to these people in ways that had never been possible before, and everyone from psychiatrists to General Practitioners and police loved it.

MIFA was also influential in the rapid expansion of other federal and state programs that supported families doing it tough with dads, mums, sons and daughters with severe mental illness. The Federal Minister at the time, Mark Butler, fully endorsed modern understandings of the types of supports needed, and I had excellent access to both he and his advisors. He made a number of visits to locations run by MIFA members in every state, organised through my office. He was happy to recognise us as the group with genuine grass-roots support across Australia.

These halcyon days never last, and the power cut that nearly switched out our lights came in the form of the National Disability Insurance Scheme. During 2012 I was a member of an Expert Advisory Committee, looking at how the proposed model could work for people with ‘psychosocial disability’ that resulted from severe mental illness. It seemed too good to be true—an extra $1.2 billion for our people each year from about 2016 onwards. How could we say no? I was warned by a colleague on the committee that ‘We aren’t really having any influence David. We’re just salad dressing on a meal being cooked up somewhere else.’ He was so right.

Several months after the committee finished and reported, a senior bureaucrat in Canberra took me aside to tell me the exciting news. The NDIS was going ahead, the legislation would be in Parliament within weeks, and trial sites in two states would start within a few months. I asked how this would be paid for. The answer was’ No problems. We can put in about half the money by closing down current programs for people who need this most, and the rest of the money will come from an increase in the Medicare levy.’ I asked which programs would close down. It was all the services we had been building for the last ten years, including Partners in Recovery. I was gobsmacked.

‘But the NDIS is only for 65,000 people, the most severely and persistently and permanently disabled, right?’ What about the other 200,000 or more Australians only slightly less disabled, who can access all the current programs? They won’t get into the NDIS and their current services will disappear. We all agreed the NDIS would be great as an addition to the options available, but now you’re saying it’s an alternative, for about a quarter of them, and the rest get nothing?’

The answer was, ‘We don’t agree with those figures David. In any case, the other groups you mentioned shouldn’t have been in these programs anyway, and the states and territories will need to step up and meet their needs.’

And there you have it. That conversation was in March 2013, and the rationale was pure fiction; part of a mad scramble to find a way to prove that Australia could afford the NDIS. But it went ahead unchallenged, and five years later, individuals and families are finding doors closing that used to be open, staff are being sacked in large numbers, and state and federal governments are still not fully admitting they made a huge error of judgement in 2013. Belatedly agreeing to some extent, but too little and too late for so many people in need, and for the staff who wanted to walk alongside them.

From that time in 2013 to when I retired at the end of 2016, most of my job became trying to hold the line, persuading as many decision-makers and other people with a voice in the game to call it out: governments of all parties had no mandate to desert these people, and talking rubbish about Australia making great strides with mental health could not be excused just because a minority were going to get a better deal sometime soon. We made submissions to parliamentary committees, we spoke to newspapers, we presented papers at conferences, while all the time trying to cooperate constructively where the Scheme was slowly rolling out to provide new life opportunities to a small number of the right people. I and a few others on the case made some headway; delaying the Scheme by a couple of years at least, convincing the Federal Government to allocate much more ‘transition’ funding, and several states and territories to plug gaps as they showed up.

I never quite got over the feeling that we did far too little in 2013 when the problem emerged. Like most people, I couldn’t believe the Government was serious about closing down programs like Partners in Recovery; programs they had boldly announced and funded only two years before.; programs that were universally popular, and undoubtedly turned around many lives blighted by mental illness. While we dithered trying to understand how it might play out, the legislation went through, and then it was all too late. Having said that, from then on I decided to ‘give ‘em hell’ every chance I got, to keep on pointing out the truth and the possible ways out of the impasse that was approaching.

It’s hard to rail against the machine when governments of both major parties have decided to implement a $22 billion scheme. The PR was relentless, and it included painting critics like us as self-serving, and/or ignorant of the facts, and/or too risk-averse to see a wonderful opportunity ahead. But we knew we were fighting for the future of the people we cared about, so I had to learn some new behaviours. I’ve always wondered at the ability of legal, industrial and political professionals to keep on repeating the same arguments, in the same words, at every chance they get. I get so bored with the sound of my own voice repeating itself. I think that has something to do with my life-long pattern of changing jobs every few years. Anyway, it hit me that I had to accept the role of inflexible standard-bearer and do it very well; it was what they paid me for.

So for three years, I became a one-note warrior, turning up wherever I could to explain for the umpteenth time that the NDIS was a great concept for those few who would get into it, but everybody else dealing with serious mental illness had to join the fight to maintain vital services. I averaged 80 trips a year during that time, and there were days when I felt like George Clooney in the film ‘Up in the air’, when he’s asked by the passenger alongside where he lives. ‘Here’ says George, pointing to his seat in the plane. I started thinking about my pitch for the next speaking engagement when I was eating breakfast; I was still thinking about it watching TV that night, and then I even dreamed about it. Where was the clincher, the cut-through lines and pictures that would sway the NDIS zealots? Or at least get them to agree we needed a Plan B for people who would miss out on the NDIS?

It became achingly obvious to all of us that we could be absolutely right and still lose. I watched a senior bureaucrat talking rubbish about there being ‘no disadvantage to any existing clients’ to a Senate inquiry, rubbish that I demolished a few minutes later. I could see all the senators agreed with me, but nobody took any notice of their report. Over time though, as the number of influential people we persuaded grew, discussions did begin to change. Queensland and the Northern Territory lead the way with new funding for people not eligible for the NDIS, after several forums that we initiated were attended by all the key decision-makers. By 2016, only a few NDIS spin-merchants would have the hide thick enough to parrot the ‘no disadvantage’ clichés. The real debates were about how to find new funding to cover the looming gaps.

I had to retire sometime, and at 70 there were other adventures I didn’t want to miss out on. A year living in Bali beckoned to Charmaine and I, so at the end of 2016 I pulled the plug. In my last week on the job, I went to a forum in Canberra. I looked around the room at people from all over Australia that I knew now, colleagues I had such respect for, and listened to some B-grade bureaucrats giving a tired, largely fact-free analysis of why we were all needlessly worried about the NDIS. I finished with a flourish, telling them they were trying to re-write history, and that nobody believed a word of it. I confess, it was delicious fun, and the applause was nice. When it was over, I sat there feeling very sad, watching people planning their next trip, conference, newspaper interview etc, etc; hoping I had made the right decision. A woman I’d never met sat down beside me. She said ‘You’re the only one here today who talked sense. We’re going to miss you.’ It was a perfect ending.

It’s a couple of years since then, and my successor is doing a great job. He’s at all the ‘top tables’ and has the ear of key government Ministers of Health and Social Services. The ‘valley of death’ scenario, with new funding coming too late to keep existing staff and services going, has hit hard. Hundreds of mental health workers have been sacked, and the majority of the people they were helping have been left to fend for themselves. I think the worst is over, and I hear about new initiatives somewhere in Australia every week. The NDIS is being implemented with breathtaking clumsiness and constant delays, but a few thousand people around the country are getting the real ‘choice and control’ over the new and generously funded packages of care that they were promised.

I have a very minor role, as a member of three boards, and these days my thoughts are just as often with a project I’m involved with in Bali. Yes, it’s about helping people affected by serious mental illness. That hasn’t changed, and I doubt it ever will. There’s so much unmet need in the world; you can’t tackle all of it. Stay focused, and sometimes just a few people can make a difference My focus is mental illness.

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