Public sector update conference
20/10/2010
Today I am here to speak about 3 topics – First – Disability is Not a Single Issue. Second – The labyrinth of Bureaucracy. Finally – the Productivity Commission’s Inquiry into a National Disability Insurance Scheme or NDIS. (I am sorry to say that it appears that my talk may be a bit out of kilter with our program – which indicates that I will be speaking to the Commission’s report regarding the Contribution of the Not-for Profit Sector – while this may be an important document, the focus of my work is disability and an NDIS is more down my alley).
Disability is not a single issue
People often suggest to me that Disability is a single issue. I remember the first time that someone said it to me and I was quite taken aback. Why? Let me try to explain.
Disability is not a single issue. Because to me the term single issue seems to imply, at least on some levels, that there is one, single solution to the issue at hand.
So for example, the ‘single solution’ may be giving a wheelchair to everyone that requires one; making sure that all blind people have a cane or a guide dog; all deaf people have hearing aids or interpreters, and that people with intellectual disability have their reading materials in plain or easy English.
But, is it true that I am no longer disabled because I have a suitable wheelchair? That having a guide dog will be the same as being able to see for a blind person? No. Even though these items may add to our quality of life and ability to participate in society, the use of appropriate aids or services do not ‘solve’ our disabilities. There are still other issues to overcome and more challenges to face. Therefore, policy makers must recognise that there is no one single solution.
Disability is not a single issue because it knows no boundaries, it crosses transport, education, employment, training, social inclusion and access.
For instance, even though I have a wheelchair to help get around. I still have to take into account my disability when I book to see a show at the theatre, or a table at a restaurant. In these situations it is actually my wheelchair, and not my CP, as such, that means I face some ‘extra challenges.’
That is not to say that items such as wheelchairs are not important – to the contrary, it is my wheelchair that liberates me. Just like inclusive education liberates the child with an intellectual disability, recognising that this child has a right to participate in the school community.
Nor am I suggesting that disabilities should (or indeed can) be solved, I often feel that my disability is a source of joy and celebration, as much as it is a difficulty.
Therefore, policy makers must realise that a holistic approach is required.
Disability is not a single issue because it affects people of all ages, races, genders, classes and religions, in different ways.
The ‘issues’ that I face with my disability are very different to those that my friends face. But that is not only because I use a wheelchair, I have other friends who also use wheelchairs. I face different issues because I, like everybody here, have a unique soul and I therefore have different needs.
I sometimes prefer to catch the tram, rather than walk.
Policy Makers must realise that people with disabilities are individuals and must be afforded dignity through choice.
Disability is not a single issue because it does not only impact on the person who has the disability, but also on their brothers, sisters, mothers and fathers.
Disability creates issues for our loved ones, many parents agonise about what will happen to their son or daughter when they are gone.
Sometimes siblings feel left out, when so much of the focus is on their disabled brother or sister.
Policy Makers must realise that disability affects not only the person who has the disability, but also the person’s loved ones .
Disability is not a single issue, so people with disabilities often rely on a range government services to help them achieve a full and meaningful life.. welcome to the labyrinth of bureaucracy.
The labyrinth of Bureaucracy
Have any of you people ever phoned a Government Department.. only to be put on hold then transferred to someone who can’t answer your question who gets narky at you? Or have you been provided with information, acted on that information, only to be told that the information was incorrect. Or have you been told by a friend that they receive a particular perk that you too could have received, had anybody told you. Or have you been told to call another number, only to find out that the first person was the person who could help you.
I call this the labyrinth of bureaucracy.. So what is a labyrinth.. well it is a maze of sorts.. now while some purists may counter this by saying that a labyrinth is different to a maze, I am using the term in its less than pure sense.
I am told that in Greek mythology King Minos ordered that a labyrinth be built so as to contain the beast-like Minotaur, the idea was to build a structure that was very difficult to escape… and it worked, many Athenian children entered the labyrinth, never to be seen again until Theseus entered the labyrinth and killed the Minotaur, finding his way back with a piece of string.
Now I very much doubt that our forefathers (and mothers) ever intended for the public service to be a labyrinth, nor do I think that our current Government wishes it to be so.
Nonetheless, one cannot escape the fact that many people get lost, or at least frustrated in the labyrinth of bureaucracy… but do not have that piece of string to help get them out.
I do not mean to be rude, I understand that we are lucky enough to have Chief Executives and even a Minister among us here today and I am certain that all of you work very hard to ensure that the public are well served. Nor do I wish to make a blanket statement that suggests that every experience with bureaucracy is bad.
I simply wish for you to consider, how, for some bureaucracy truly is a labyrinth. This can be said for those people who are accessing services on account of their disability.
So, why is it a labyrinth?
It is HUGE
Well I imagine labyrinths to be huge.. and the public bureaucracy is indeed huge. As at June 2009 in South Australia we had over 100,000 employees working across 21 Government departments and 75 Public Sector Organisations – administering the multitude of services that the Government provides. These services range from motor vehicle registration to the register of births deaths and marriages to public education. Of course that does not take into account Commonwealth Government employees who administer the numerous Federal Government departments.
It is so big that sometimes it is difficult to work out where you need to go to access services. For example, if I am recently diagnosed with a disability, where do I go to find out what services are out there to ensure that I am able to live a full and meaningful life.
I look in the phonebook under ‘G’ for Government – and I am referred on to ‘P’ for Parliament, but still no result. I then notice the notation to refer to the specific government department, but I am unsure which Government department provides the services… to be honest I am not sure of what services are even out there.
So I contact the Services SA Helpdesk and the operator is wonderful, he gives me a couple of different numbers to try. I feel that I am getting somewhere – and after a couple of calls I know that it is Disability SA who can help me… or they are at least the best place to start… welcome to the labyrinth.
There are Road Blocks
Of course I cannot expect to find the centre of the labyrinth straight away, every good maze has a few road blocks. I get put on a waiting list for an assessment meeting. I am told that I will need to attend a Disability SA office for this assessment. Now that is another road block in itself, the appointment time is at the same time as my friend has another appointment and I need this mate to drive me, so I reschedule the appointment.
Finally, I attend the appointment and I find out that I am indeed eligible for services and equipment and I am relieved because it is getting pretty tough trying to cook a meal on my inaccessible stovetop.
There are One Way Streets
But wait….. once I get to the meeting I feel that I am on a one way street.. first of all, my choices are stifled. I am told at the first meeting that I cannot manage my own funds and that I will be allocated services. But I know what I need – I need a microwave – and If you pay for me to get a microwave, I won’t need the support worker to cook my dinner on my inaccessible stove top… sorry the worker says – ‘I have to work within the rules you know’. Now that is easy for the worker to say – but it is difficult for me to accept when it is those rules that determine so much about my life.
I soon realise that I have a long way to go… sure I am ‘lucky’ have a diagnosis which renders myself as being eligible for Disability SA services.. but remember that disability is not a single issue… it spans across many areas of my life..
I’m Going Round in Circles
So while I am waiting for my kitchen and bathroom to be modified, I realise that my funds are running low. I am told by a mate that I need to speak to Centrelink about income support. Centrelink require a report from my GP and I am told that I need to undertake a Job Capacity Assessment. More forms – surely the forms that I’ve filled in for Disability SA should cover it. I feel as though I am going round in circles.
By this time I am frustrated at waiting, it has been months since my appointment with Disability SA and still I have no services. It is not just frustration that results from this process, it is also emotional or even physical exhaustion. I am starting to question whether I will ever get these services, people keep saying to me that my wheelchair is coming, that my kitchen shouldn’t be too far off. Then I hear the stories that some people have been waiting for years. I recall a friend of mine once saying, well Kell I’ve only been waiting for two years for my wheelchair, as if it is OK to wait. But imagine waiting two years for a new car, the old one is clapped out, dripping oil, blowing smoke. But you will have to make do.
Even when I do receive the services and I have my pension, I feel as though there are gaps. I have been provided with a wheelchair for short journeys, but how do I get to my physio appointments. Those Access Cabs are really expensive.
Then there are Secret Passages
It is not until a few months later when I am speaking with a friend that I am told that I may be eligible for extra respite services and subsidised taxi vouchers. Why didn’t anybody tell me about this?
I speak with someone from Disability SA who says that I need to speak to someone else, from the Department of Transport and I am given another number so as to access respite from the Commonwealth Government.
I contact these departments and they send more forms. I have to get my GP to help fill them in – even though Disability SA and Centrelink already has this information… when I finally fill in these forms I am told by my partner that he is moving to Darwin.. will I come too? I know that that will mean more assessments, different government departments, the labyrinth seems to lengthen… or maybe it is infinite.. but does it have to be? Surely there is a better answer?
National Disability Insurance Scheme
So is there an alternative to the labyrinth of disability services? Well that is a question that the Productivity Commission has been asked to consider.
In November 2009 many of us in the disability community breathed a collective sigh of relief when the then Prime Minister announced that the Productivity Commission would be asked to investigate an alternative to the current system of disability services.
What has the Productivity Commission been asked to do?I refer you to the Terms of Reference which require the Productivity Commission to:
Undertake an inquiry into a National Disability Long-Term Care and Support Scheme which:
- Provides long term care and support for people with disabilities over a lifetime
- Replace the existing system funding
- Realises a range of support options including individualised funding
- Provides coordinated packages of care services which could include accommodation support, aids and equipment, respite, transport and a range of community participation and day programs available for a person’s lifetime
- Assists the person with disability to make decisions about their support
- Provides support for people to participate in employment where possible
In undertaking this inquiry, the Government has asked the Commission to include an examination of a social insurance model on a no fault basis… a National Disability Insurance Scheme.
At this stage, the Productivity Commission has received 595 submissions and the list continues to grow. In reading these submissions, I note the following general themes.
For example, many people are exhausted from tackling the labyrinth of bureaucracy, people want an improved system which focuses on individual choice and control, parents want to know that their children will be cared for, it is clear that people are sick of waiting (or hoping) for services and equipment, people are tired of being told that disability services cost too much.
Can an NDIS solve this? Can it act as the string to guide us out of the labyrinth? Yes I (and many other people) believe it can. That is not to say that it won’t be expensive, but I think that we as a society can afford it, if we can find $530 million for a sports stadium, surely we can afford people real dignity.
I recently did a radio interview with David Holst and Amanda Blair regarding the need for and possible implementation of a NDIS. One option for funding such a scheme would be that everyone pays a small levy toward the cost of providing disability services, not dissimilar to the Medicare levy, thereby making disability services a true community responsibility, not a privilege.
I had to leave the interview early as I was due in Parliament. However, I am told that not long after I left, a listener called in to enquire as to why they should have to ‘pay for some kid in a wheelchair.’
Obviously this affronts me on many levels, but I can only say that I wish I had been in the studio so that I could say to that caller what I immediately said to David when he told me:
‘I could stop paying my taxes; I could stop paying my Medicare levy; but when that person needs a road fixed, or their child gets sick, or they need a pothole fixed outside of their house, they had better not come crawling to me.’
Granted, this is a somewhat blunt and ineloquent way of phrasing it, but what I mean is that if we can accept as a society on the whole that everyone is entitled to medical services; to an education; to safe and reliable roads and transport services, then why should disability be any different? I did not choose to have a disability, any more than a woman chooses to acquire breast cancer.
One in five people live with a disability, and one in five people care for people with a disability, so why do they not, like everyone else, seem to deserve the view in they eye of the general public that they are entitled to the Australian ideal of ‘a fair go’?
I believe that a well designed NDIS could help achieve this if it centres around the notions that:
- Assessment should be straightforward
- PWD have rights and are entitled to services, not charity
- PWD have unique and individual needs
- PWD are entitled to choose which services they require
- PWD are entitled to be in control of their own live
Now we just have to wait for the Productivity Commission to hand down its report and hope that the Governments of Australia will provide the metaphorical string to help us escape the labyrinth.
Thanks for listening. I understand that my talk is quite different to others that have been given today. However, I hope that it has given you some insight into the experience of people with disabilities in SA today, and how we can enable equality by empowering people with disabilities to realise their rights.
