This is the time of the year when some of us are inclined to look back at the year just gone, and forwards to the year just begun – sometimes with a sense of optimism and renewal, on occasions with despair. In most cases, the resolutions which we make are probably the products of the triumph of optimism over experience – but mostly, I think, that’s to be encouraged! A great deal has been said in recent weeks about 2016, and the general consensus seems to be that it was a bizarre year in which there was not a lot to celebrate regarding the human condition or the state of the planet.
On a less global scale, however, as I look back over the year there is a particular point, at the beginning of July, which has given me both optimism and anguish. On that date the roll out of Australia’s National Disability Insurance Scheme (NDIS) began – a long-awaited change in the services and supports for people with disabilities, with the promise – at last – of dignity, a measure of self-determination, and the bipartisan political support necessary to make it happen. This has been a thrilling prospect for many people – not only those with disabilities, but also their closest associates – after many years in which poverty and isolation have been the lot of many, if not most, with little acceptance in public policy of social responsibility in this domain. People with disabilities, it seemed, could now dare to dream.
As a person who is blind I shared these dreams, albeit with my usual reservations about believing all the spin. But, beyond the political rhetoric, I had heard good stories from people who had participated in the various NDIS trial sites around Australia. Their experiences in the trials seemed to suggest that they would be able to play an active role in defining their priority needs and how they would be met, in a flexible and imaginative way. At an early panel discussion I was impressed by the account of one such trial participant who, with the support and encouragement of his planner, was able to interpret ‘difficulty in dressing oneself’ in a way that was relevant to him (and to many blind people) – not as the inability to pull on items of clothing, do up buttons, bend over to put on footwear, but as the inability to shop independently for appropriate clothes, and to identify when clothing was in need of minor repairs or dry cleaning. Bingo! A perennial problem solved – and in quite a modest manner, by including a funding component to employ assistance with these tasks.
I heard, too, from a young woman who had been able to include a component in her funding package to cover costs associated with her dog guide: food, veterinary expenses, grooming and equipment. These costs have been a heavy impost on blind and vision impaired people who use this form of mobility assistance, and in fact have been a significant deterrent for many.
So, on July 1 when the roll out of the NDIS across Australia commenced, there was reason for jubilation at the prospect of significant change and improvement in the circumstances of many people with disabilities. But not, alas, for me. I am totally blind, am no longer in employment, prefer to use a dog guide for mobility, read Braille and use a variety of electronic and digital devices to enable me to read and write, research information, establish and maintain contact with others in Australia and around the world, and so on – a pretty average 21st century Western existence, really. But here’s the rub: I have passed the magic age of 65 and the NDIS has shut me out!
I applaud and celebrate the potential of the NDIS to transform the lives of my blind and vision impaired peers, but I feel anguish at my exclusion from this transformative program. My new dog guide, for instance, will have the same need for food, maintenance and veterinary care, but whereas a person a few years younger than me might reasonably expect some support (to the tune of around $3000 per annum, I’ve heard) it seems that this support will not be extended to those over 65. We, it seems, will be expected to receive our disability supports via the aged care system (My Aged Care) – and there is precious little information available about how that will work and what it will consist of. In the case of dog guides, right now it seems that the dogs will continue to be provided free of charge to those who are ineligible for the NDIS, but the additional support for associated costs will not be forthcoming.
Many similar questions remain in relation to how a person like me, with the desire and intention to participate as fully as possible in society, will receive the supports needed to do so. There are many healthy and active people in Australia who are over the age of 65 – indeed, there are Commonwealth government policies and programmes which explicitly promulgate the concept of healthy ageing – but in the case of people ageing with disability there appears to be no recognition of this fact. I really want to be among the fit, healthy and socially engaged Australians – but why can I not receive the same supports as my (slightly) younger peers to enable this to happen?
A shorter version of this blog piece was published as the lead letter
in the Sydney Morning Herald on the day of the Federal election in July, 2016.