Last week I was fortunate to sit through a fascinating presentation by a man named Dr Paul Collier who graduated from Oxford University. Paul spoke at the Australian Federation of Disability Organisations conference about British funding that is known as SELF DIRECTED FUNDING. Paul is a quadriplegic. To live independently he needs a personal assistant (PA). The PA helps him get out of bed, prepare meals, bathe and to participate in everyday activities such as work or even social activities. Paul spoke about how he is in total control of his support funding and how he decides who, what and where it is used. In Paul’s view, Australia’s disability support “…is in the dark ages.”
In Britain they have a funding system where money is allocated to the person with a disability. The person with the disability then uses that money for their access needs. If you are blind you might use it to have books translated to Braille or purchase technology to access the computer. If you are deaf you might use this funding to purchase interpreting. You could use this funding, for example, to get an interpreter to be able to communicate with a personal trainer at the local gym. If you were a parent of a deaf child you could use the funding to pay someone to teach your family sign language. If you were hearing impaired you might use the funding to purchase captioning to attend a school performance at your kids school. YOU decide!
Now at the time of writing I am not sure if all of the things I have just mentioned can be funded through the Self Directed Funding as is provided in Britain. I asked Paul if it was possible, for example, for parents to use the funding to purchase sign language tuition or even speech therapy for their child. He replied, “Why not!” But the beauty of SELF DIRECTED FUNDING is that it puts the person that receives the funding in control. The individual disabled, Deaf or whatever manages that funding and can also receive support as to how to use that funding if needed. In Australia we virtually have to beg for handouts. It is very disempowering and frustrating.
On the weekend I attended the ASLIA Victoria Interpreting Awards. As usually happens when I attend events like these people corner me to talk about The Rebuttal. One young Deaf woman spoke to me at length about her desire to bring young deaf people together. She spoke of her desire for a group of young Deaf women to attend a youth convention overseas. She was saying how frustrated she was that she could not find funding for them to attend. She had to beg to our Deaf Sector organisations for assistance. They provided the group with some of the funding but not enough. This made me think who has control over funding for Deaf and hard of hearing in Australia. Is it Deaf people? Is it the hard of hearing? Far from it!
In Australia our Deaf sector organisations control a huge amount of funding. If we Deaf or hard of hearing people want a piece of it we have to go beg for it. We apply to trust funds, plead poor and asking for hand outs. We have to put forward our case for money. Often we are competing against each other for these handouts. And who decides who gets this money? Is it Deaf people? Is it hard of hearing people? Are you smiling at the irony of it yet?
No, the funding is controlled by a small group of people, nearly all who are not Deaf or hard of hearing. The questions I ask are – would you rather control your own funding? – AND – do we really need people, hearing, Deaf or otherwise to have all the power as to how we should use this funding? In fact, if we had SELF DIRECTED FUNDING would we need any deaf sector organisations at all? Perhaps all we would need is advocacy organisations such as Deaf Australia or Deafness Forum to advocate for better access to things such as education, employment and captioning. Perhaps the assets of the Deaf Societies and Deaf Sector organisations could be returned to Deaf people to manage and use for things that they see as important.
Imagine if we were not paying massive salaries to management – how much money could be redirected to Deaf and hard of hearing people themselves to control and use how THEY want to use it? Why should we pay in excess of $200 000 to a CEO, $150 000 to the deputy, six figure salaries to the various managers of departments when this money could be directed to Deaf and hard of hearing people themselves to use as they see fit? Is it right that $650 000 a year be directed at a management team of six people when client X in Timbuktoo cant even get $1 000 to attend a sign language class to communicate with their family? Think about it!
How much money are we spending on maintaining old buildings or new buildings to house these organisations? Millions of dollars a year are being spent on maintenance and upgrading car-parks. Often this money is being spent on buildings that cannot even be classified as assets because they are heritage listed or leased to government departments and cannot be sold. History is lovely but what would you prefer – a system where individuals are in
control of their destiny and their funding? – OR- to be able to stare at and visit a lovely old building?
Many years ago the late Anne McCrae, who was the CEO of the NSW Deaf Society at the time, gave a presentation. She suggested that we should all be striving for a system where Deaf Societies were redundant. The gist of what she was saying was that we should have a system that allows Deaf people and hard of hearing people to live independently without the need for ongoing support. My interpretation of what she was saying is that Deaf and hard of hearing people should not have to rely of Deaf Societies for their needs but they should be in CONTROL. Perhaps Self Directed Funding is a way to make this happen.
Now I know there will be people that say that that will be the end of the Deaf Community Centres like the grand old 262 building in Adelaide. But this need not be so. In my vision I see these assets being handed back to the Deaf communities of Australia to direct and control as they see fit. Perhaps 262 can be funded as a boutique hotel where all profits are directed back to the Deaf community to maintain its own Community Centre.
I am aware that there will be people who say, “But what about parents that have deaf kids and need support and information? “ Or “What about Deaf or hard of hearing people that have additional needs and require extra support?” Yes, these are issues that need thinking through but elsewhere it is happening, so why not in Australia? The question is – Do you want funding meant for YOU to be spent on things or people that take the funding away from YOU? It is a debate worth having. Indeed it is a debate we MUST have!
“The situation for people with disabilities and carers in Australia is a national disgrace,”
Dr Rhonda Galbally, chairwoman of the National People with Disabilities and Carers Council.