In 2012, when I was part of a team teaching Health Science students about Australia’s healthcare system, I attended a guest lecture by John Della Bosca, campaign director for the National Disability and Carers Alliance’s Every Australian Counts campaign, about progress towards a National Disability Insurance Scheme. Like most Australians, I was excited about the prospect of improved support for those who picked a disability parcel out of life’s lucky dip. However, even with popular goodwill, the political and organisational challenges were daunting, and with my sociological hat on I considered the central notion of enabling people with disability (PWD) to enact choice was laudable but problematic.
As I munched on my tofu salad baguette and we chatted with John after his lecture I had no inkling that the NDIS would be personally relevant. I thought little of my cramping legs, and blamed my new glasses, tiredness, plantar fasciitis for the fact that I’d tripped and fallen a half dozen times so far that semester. I did not yet know that by the time symptoms first appear, some 70% of motor neurones have already died; nor that motor neurone disease would keep on taking.
Between the Gillard Government’s introduction of the bill to establish the NDIS in November 2012 and the passage in March of the National Disability Insurance Scheme Act 2013, I received the diagnosis that would relocate me into the PWD camp. Even so, the Scheme felt more of social and theoretical than personal interest. In workshops organised by colleagues I heard about the mix of fabulous new support, variability and chaos that was happening in trial sites (as you’d expect with a pilot, from which all the learnings would be learned and improvements made, or perhaps not). The mid-2016 date flagged for national rollout of the Scheme felt both (excuse me being a sceptic-pants) unlikely to be achieved and well beyond the horizon of typical life expectancy within which I was living.
As 2016 arrived, and I was increasingly disabled but still very much alive, I started to take seriously the possibility that I might actually become a beneficiary (to focus on the upside) of the Scheme. We were already struggling at the limits of Homecare available under the existing State Government Scheme, which I was hoping would be rectified. I was sad that I would lose access to my fabulous NSW Health allied health team. I was less than reassured to receive several NDIA phone calls for someone entirely different due to a mixup in paper(less-office?)work.
After a session with my MND NSW regional adviser to talk through the kinds of support that I should request in my plan, I had my first planning meeting in October 2016. We met with a Local Area Coordinator, who listened and empathised and asked that my MND association rep send her documentation. As far as I can tell, she then passed on – something – to a black-box-enclosed mystery planner, who generated my first plan.
From looking at it, I could see that our arguments for a six-month plan and coordination of support had washed: a win! I was perplexed by the disparate figures on the printed plan and online portal (I’ve heard people say you need a PhD to disentangle NDIS plans; turns out it doesn’t help), but there was funding for extra hours of care. As I’d heard was standard for people with MND, some basics were missing and we lodged an immediate request for plan review, which fixed the problem. My allied health team conducted reviews and lodged reports with quotes for equipment that would enable me to continue communicating and be safe.
Come March 2017, I was lined up for an interview with Dan Conifer for an ABC News story about the NDIS and people with neurological disabilities. In a preparatory phone chat I discussed my experience to date, mentioning that I was waiting to hear back about the communication equipment and shower/toilet commode. In a piece of exquisite timing, in the day before our interview I received correspondence denying the former on grounds including ‘value for money’: bluntly, it seemed the decision-maker wasn’t convinced I would live long enough to justify the cost. Needless to say, this became its own ABC Online news story (my post with links is here: NDIS meejah interview). The commode was approved after a shitload of extra paperwork by my occupational therapist, then its arrival delayed by a few more months because, as far as I can tell, the funds had been allocated in a way that the NDIA accountants found too complicated to deal with!
It took us some time to regroup and build a successful case for comms technology (delayed at the start by some pesky surprise hospital admissions; delayed at the middle/end by some no-surprise NDIA delays). Possible ingredients of the recipe-for-success included: trialling different technologies, alignment with my NDIS plan goals, exhaustive reporting using the NDIA’s form de jour about the pros and cons of different options, supportive letters from my medical team, general education of the NDIA about the needs of people with MND by the state and national MND associations, behind-the-scenes lobbying of persons within the NDIA, presumably some work by bureaucrats within the NDIA, and (perhaps) the aforementioned news story. I am incredibly grateful to all those involved and that funding of the NeuroNode was finally approved in 2018. Without it, I would be not only paralysed but unable to communicate: the classic ‘locked in’ condition that MND imposes.
Since then, my interactions with the NDIA have been uniformly positive, assisted by my wonderful coordinator of supports, Alex, from MND NSW. Planners have come to meetings at home and have created plans with adequate support.
My most recent planning meeting, held in the ICU room in which I have now been encamped for three months, was high stakes. Getting home to my beautiful family after my tracheotomy and laryngectomy is contingent on having in place around-the-clock care, with carers ready to suction my trachie, deal with machines that go ‘ping’ and the like, as well as all the exciting personal care that I required in my pre-ventilated life. Funding for this was in the process of transitioning from a State Government scheme to the NDIS, so there was a risk of being caught in the middle. Background negotiations by my fab neurology team clarified the NDIS was our best shot.
I was dressed to impress for the planning meeting in a fetching blue gown, subtly accessorised with a nasogastric tube. The IV stand holding my phone boasted a new artwork by my daughter, Kimi, a quickly sketched representation of my goal destination, home. The planner and his offsider, Alex, my husband Densil, my neurologist Dom and MND clinic nurse and several senior ICU nurses crowded around my hospital bed (my mum, who had spent the night in ICU after a hip replacement, also made a brief appearance, waving from her bed on her way to the ward). The planner came prepared: he had read the documentation, made an effort to understand my needs – as a person with advanced MND on mechanical ventilation, as a mother and wife, as a writer and community member – and had thought about the best fit between the NDIA guidelines and our situation. He was empathetic and careful, and the plan we received a few days later reflected this, including – of note – the required 29 hours per day of carers (with two carers needed for hoisting, morning and night) and funding for ventilation equipment! Hurrah!
I don’t have the words to express how deeply grateful I am to those who worked to make it happen so smoothly, and Australian taxpayers for funding the NDIS. Despite my whinging about some of the frustrations of dealing with the NDIS, I appreciate how lucky I am that I have lived long enough to have its support, and that its support will enable me to continue living a meaningful life, and (once carers are recruited and trained) return home to my family. I understand how difficult it must be for those whose MND diagnosis at age 65+ means they must battle the greater frustrations and constraints of the aged care system. And I sincerely hope that my experience of an increasingly user-friendly NDIS isn’t solely due to the excellence of my advocacy team, but signifies improvements across the board. Ordinary life is extra challenging for those of us with disabilities: the NDIS should help, not hinder.