Presentation

Has Life for People with a Disability Improved?

By Christian Astourian

I am sure that when asking the question “Has life improved for people with a disability?”, the answer will be “Yes”. But, let ask ourselves another question: “How much has life improved for people with a disability and how much there is still to go in achieving full citizenship where people with a disability have the same opportunities as everyone else in society? Also, how long is going to take to get there?”

When it comes to disability, my view is that we are all disabled in society, since we all have some form of limitations that is visible or hidden, simply because we are human beings. Why then does the community believe that people with a disability lives are very limited in terms of commitments, goals, responsibilities and consequently their time is not precious and

they can wait longer than able bodied for things to happen or be done? Again, looking at adaptability to situation and society, everybody needs to adapt in life, but why people with a disability need to adapt more? Obviously, people with a disability are not limited by their disability as much as they are limited by the attitude of both society and service providers.

The real problem with disability arises when society judges a person to have a disability as such, and to be inferior, neglecting to appreciate the fact that that person has the advantage of looking at the world with different eyes. Disability by no means should be considered a limitation, but rather an opportunity to look at things differently and focus on diversity.

In society, it is common to judge people from appearance. For example, when a person has verbal communication difficulties, many people presume that this person is unable to communicate and understand things, therefore should be treated like a minor. Even though more and more people in society today are respecting and understanding better what people with a disability can do rather than cannot do, there is still a mental closure and fear dictated by ignorance and inexperience towards diversity.

Personally, my life has been an uphill battle for my freedom and independence to live my life the way I want to, but if I think how I was only 10 years ago, definitely now my life has changed for the better.

In my life I had to overcome the challenge of believing in myself and understand that my disability should not stop me from living my life the way I want to. I grew up in an overprotective family where my parents used to do everything for me. As a consequence, it was very hard to discover my abilities beyond my disability.

In 2000 I moved into a government unit to achieve independence where I had to take responsibility for myself and my life.

To achieve full independence, I needed support which came through the Home First Program, which allowed me to get funding managed by a brokerage agency to pay agencies to provide me with Attendant Care Support 3 times a day every day.

The funds could cover for a maximum of 34 hours a week of attendant care support and if I did need a few more hours of support then I had to move to a share accommodation with other people.

Because I wanted to live on my own, I had to adapt myself to the 34 hours and organise my

day in a way to make support worker’s time efficient for my needs.

Another challenge that I had to meet and am still facing today, involves the different types of personality and professionalism in people providing me with support. The most common issue that I face is when support workers come to my place and start supporting me the way they believe is more appropriate, without

asking me anything about what and how I would like things to be done. There are also situations where support workers behave like parents and I always need to remind them that I do already have parents. I believe this is the result of poor training and insensitivity to my rights as an adult and a human being.

In regard to the brokerage agency managing my funds, I could never get from them a clear picture on how much funds I had left and saved. Also because the attendant care agency was invoicing the brokerage agency, I had no control over what the attendant care agency was charging. About 4 years ago I realised that for a certain period I didn’t have in

my funds the amount I was expecting to be

banked and therefore asked the brokerage agency to give me all the invoices they got for that particular period from the attendant care agency for checking. Since then, I have started receiving from the brokerage agency regular invoices in regard to payments already made.

About a year and a half ago, I decided to start using the self direct fund approach.

Most of the funds went to MOIRA and in this case I had more control and greater accountability over what is going on. This system works in a way that the attendant care agency send the invoices to me and I send them to MOIRA for payment. Therefore it gives me the opportunity to make sure the charges in the invoice are correct and clarify with the

attendant care agency about any issue before they get paid.

A small part of my fund goes to another agency who pay directly my support worker without any need to go through a service provider. In this system, I send the support worker’s timesheet to the agency, then I receive an invoice from them which I forward to MOIRA for payment.

Other options available are: - the individualised support package where the

funds will go directly into a bank account to pay the attendant care agency

- the opportunity of setting up a business to employ our own support workers.

The fact that now I have more control over my funds means more accountability and empowerment as a client on dealing with service providers but there are still issues that need to be addressed in terms of rates negotiation.

Most attendant care service providers charges the total DHS unit cost per hour coming from the fund and therefore are not open to any type of negotiation. Also, every time the unit cost is increased, this increase is not passed on to support workers.

When the brokerage agency used to manage my fund, they used to keep a commission and then pay the attendant care agency to provide me the service. Now that invoices go through

me, the attendant care agency has increased its hourly rate to incorporate also (what used to be) the brokerage commission. Obviously there is need for more competition in terms of attendant care agency’s hourly rates and better pay for support workers which as a consequence will increase flexibility, recruitment of workers and availability to cover my shifts at different times of the day and night. In the last 9 and a half years, since I moved out to live independently, I have completed a degree in Computer Science at the University of Melbourne.

Over the years, I have also joined 8 board of managements and committee including

becoming president of the Cerebral Palsy Support Network for 5 years and creating Melbourne's Longest Cake in partnership with Crown Casino which is now a yearly event part of the Melbourne Food and Wine Festival.

I was also a political candidate running at the Victorian State Election 2006 in Brunswick.

Presently, I am sitting on:- the Disability Advisory Committee for the Melbourne

City Council - the State government Disability Service Board

which also includes the Disability Service Commissioner.

- Board member of Scope Victoria

- Run my own consultancy business called “Wings of Freedom” which deals with disability issues and coordinator for Diversity and Disability, which is a self advocacy program for ethnic people with a disability run from the MRC North West.

In spite of all my achievements, I still face many challenges particularly on inaccessibility of public transports and built environment, making me feel unwelcome.

My goals are what make me go on with my life and are not unique to myself, because every person, whether they have a disability or not, should have a goal in life and consequently achieve it with the right support and commitment

Poem for conclusion

To laugh often and much,To win the respect of intelligent people and the affection of

children,To earn the appreciation of honest critics and endure the betrayal

of false friends,To appreciate beauty, To find the best in others, To leave the world

a bit better, whether by a healthy child, a garden patch or a redeemed social condition,

To know even one life has breathed easierBecause you lived,

This is to have succeeded.

Ralph Waldo Emerson