The signing of an agreement late last year between the Federal and NSW governments for full rollout of the National Disability Insurance Scheme from 2018 was great news for the state in general, and for disabled people in particular.
Yes, it’s a lot of money — just under $6.5 billion allocated for that financial year. I don’t begrudge anyone questioning the way public money is spent — including on disability support. If anything, being a disabled person myself, I am even more concerned that the funds intended for the NDIS are spent to maximise outcomes for as many disabled persons and their carers as possible. I can also understand that it will take some time to get the scheme working properly, particularly if we don’t want to waste the money. But with five-and-a-half years until full national rollout, disabled people and their carers are being asked to be very patient — as always.
While they wait, the cost of disability is being borne by all of us — but by far the heaviest burden is on those with the least resources, the disabled themselves. Any attempt to gauge the value-for-money of the NDIS must take into account what the present costs are, some of which are not easy to quantify.
If it is a success, the NDIS will make life a bit easier and more fulfilling for the most disabled people in our society. It promises a user-directed approach to allow people to adapt their homes, access education, employ professional carers and generally make possible many of the opportunities and activities the rest of society take for granted.
The benefits will mostly be in the area of quality of life. This is as it should be, but it is hard to quantify in monetary terms. It is also likely that many full and part-time carers may be able to return to the workforce, or else increase their number of hours worked. This not only benefits them and their loved ones, but will increase workforce participation and consequently, the government’s tax purse. A win-win outcome.
But it remains to be seen whether the NDIS will be able to assist most disabled people in truly taking their rightful place in society. What do I mean?
Consider, for example, that many disabled people simply don’t have what they need to get and keep decent employment. According to the Australian Bureau of Statistics report in 2011, the percentage of working age disabled people who were participating in the workforce was 54 per cent. The rate for the entire working age population is 83 per cent. Even worse, the stats for workforce participation have been stagnant over the 16 years from 1993-2009 over which the ABS has kept statistics.
While the 46 per cent of working age disabled people who aren’t working or looking for work include some with severe impairment, for whom participation would be a massive challenge in the best of all possible societies, many others are well-educated, energetic people whose barriers are related to mobility, accessibility and lingering indifference or unease by employers, who fear the added burden of employing people with a few extra needs. For some, the cost of tools to make work possible need not be a barrier because some services exist that can access public funding to pay for necessary equipment and workplace adaptations. But, if you’re visually impaired like me, there is little or no funding or assistance to help you prepare for or find work, especially at the professional level.
Lack of employment in large part explains the high rate of poverty amongst the disabled. And it is indeed very high. According to a report by PriceWaterhouseCoopers Australia released in November 2011, 45 per cent of Australians with a disability are living in or near poverty. Australia was ranked bottom of the OECD in this measure, the average of other OECD countries being just 22 per cent.
The NDIS might go some way to fixing this. The sad fact is that being disabled is bad for your bank account, particularly if the only income you have is a government benefit. If you find yourself in this position, there are few funding options to purchase required tools if you don’t yet have a job, or else are just trying to make your way through daily life. For example, being significantly visually impaired, I can only read text and use a computer through the use of high-tech hardware and software. This includes a desktop reading device ($2000), a portable reading device ($500), a screen-less iPod-like device ($500) and various software for my computer (more than $1500). Together, these tools allow me to listen to audio books, write this article, read the news, convert printed text to electronic format and have it read to me. That all comes to at least $4500.
But this is small compared to what many other disabled people have to pay for. Consider electric wheelchairs, specialised therapy services and full time carers — none of which I need. Because my vision loss is progressive, my education and early career were not significantly affected by my reduced vision. However, 25 years on, completing a Masters degree was a whole other challenge, one which highlighted to me the sort of struggle many disabled people face, and which the rest of society are ignorant of, either innocently or wilfully.
It’s often left to carers to take up the slack where society fails, and friends and family to assist where they can, with time, resources and support. This may help avoid poverty, but there are other impacts of disability, particularly if they result from a progressive disease. The emotional and psychological impact on carers and family is often huge and sometimes not even understood by the disabled, let alone the community in general.
It needs to be remembered that few disabled people are capable of being champions like Kurt Fearnley, although he inspires many to be their best. Similarly, few carers and family members will ever be Mother Teresa. Most of us muddle along, concerned with the same things as everyone else, in addition to the challenges thrown up by disability.
The NDIS is both a moral imperative and a wise economic policy. Without it, I don’t think a prosperous society like ours can consider itself enlightened or clever. In of itself, it won’t be enough to fully resolve the employment problem, but it should make a substantive impact on quality of life and will start us down the road to greater workforce participation for carers and many disabled people. The other costs of disability will remain so long as society lacks the courage, compassion and conviction to enact the social and cultural change Australia’s disabled population are desperately waiting for.