Taking Control

moonLast 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.

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13 thoughts on “Taking Control

  1. Hi Gary,
    Having also been at the AFDO conference I thought I’d also make a comment. My favourite quote from the Conference came from the NZ Human Rights Commissioner when she said that people ask her if we want a bigger slice of the cake and she said no, we don’t want a bigger slice of the cake, we want to re design the entire kitchen, and we’d like to bake some cakes of our own!
    Re self directed funding, I totally agree with you. I work in a program getting people with various disabilities involved with sport and this is a big issue. Say you have Person A who likes swimming, Person B, who would rather play chess, and Person C who wants to watch TV and they’ve all got intellectual disabilities and live in a shared house. The carer only works during the day and the van is only available then so the 3 people all get put on the bus and driven to the swimming pool where only one person wants to get in ! Then success is judged by the number of swimmers rather than from the perspective of the people taking part. Luckily there is now a long overdue move to move away from this model to actually supporting people doing whatever it is that interests them, same as everyone else gets to do.

    It is the same sort of scenario with Deaf access. Things are offered but people have so many different things that interest them that it is hard to get good attendances at what is on. It would be far better if Deaf people could get money to access community events or activities that are meaningful for them, whether that be some sort of annual allowance or if the money was held centrally and could be accessed the same way we access NABS. It would also make us consumers with money to spend on things we like, and would hopefully in itself be a move away from the charity model.

    Not sure I agree with you though over dismantling the Deaf societies etc and selling off the buildings ! I still really miss the old East Melbourne VICDEAF. Buildings have a lot more associations and meaning for people than their monetary value and it is great to have a central gathering or information spot where you can relax.

    • Karen, thanks for your response. I would like to point out I didn’t say sell them off I said to hand them back to deaf people to nmanage as they see fit. A community centre is very important and perhaps by utilising assets we can create sustainable community centres. All part of the debate though so thanks again for your response.

  2. There are many arguments for and against the self-directed funding “movement”. In the UK, this is called Direct Payments and I have not yet come across a situation where deaf people receive direct payments, which is mostly used for high-dependency people and most deaf people don’t fall into this category.

    Basically the disabled person receives a “prescription” from their social worker for whatever i.e. equipment, carer etc, the person finds a local supplier, goes to them and receives the equipment/service.

    If you take the standard business model as a given then this scheme will work (i.e. the disabled person has a choice of providers to choose from) only if there is sufficient demand for these services and if the provider is able to remain financially viable.

    But if the disabled person has very frequent or specialised needs (i.e. deaf people) then the standard business model does not work. If there are 2 nominated providers in any area, one of them has a high chance of going bust. So there is always going to be one nominated provider for most areas for deaf people, it all depends on the population density and ease of access to the provider.

    Also another factor is the model of social care used in the area. Australia does not really have a social care system like those of Europe countries. It is very possible for an Australian deaf person to go through life withiout ever having seen a social worker or received some sort of support from the local authority. In the UK it is absolutely IMPOSSIBLE for a deaf person to go through life without ever having seen a social worker – if this happens the only reason for this happening is if the local social services made a hash of things.

    I haven’t responded in full to the arguments put forth in this paper, I only responded in part and for those arguments I didn’t contest, that’s another day.

    • I’d be interested to hear your thoughts on the other issues Paul. Dr Collier did comment on some headaches in administering the funds. It appears to be done by the local councils and how it is implemented from council to council varies. Some are effeicient and others less so. That would be very similar to the states here in Australia that generally have very different policies. Nothing is generic in Australia.

      For me the issue is about control. There is a lot of wastage of funds on administration and management. Indeed I have seen figures that show 85% of an organisations funding goes to management, administration and building maintenance whilst only 15% actually goes directly to services deaf people.

      In recent years the NSW and Victorian Deaf Societies have moved premises. As they have done so the community centres that were once the Hub of the Deaf community have been lost. This has led to the Deaf community becoming very fragmented. While Victoria still has a community centre of sorts it is not always readily accessible. Indeed we have a bizarre situation where someone has to wait downstairs to let people in after 6.00pm unless other arrangements are made. In NSW the community became very fragmented and I believe the loss of the community centre was indirectly responsible for tyhe collapse of the state sporting asnd recreation association – not fully – but if one looks back enough they will see the issues all began to occur after the closure of the Stanmore centre.

      The Deaf community had little say in what happened in these instances, though I am sure the boards of the organisations will deny this and cite they consulted widely etc. SA has its 262 and despite reassurances the community is fearful mismanagement of 262 will see it lost, as it very nearly was.

      The issue is self control. In giving self control to Deaf and hard of hearing people, whether it is over their organisations or the funds provided to support individuals, these people need to be allowed to make mistakes. They will make mistakes just as have the hearing people that run our organisations. they may well mismanage their own funds and even their organisations, most likely they will not. Surely they can do no worst than the hearing people have over the last 100 years. Indeed this point was made often at the AFDO conference mentioned in the article.

  3. This concept is very interesting and a refreshing food for thought. We must continue to debate about this!

  4. I think the concept of heaving a persn in control if a very timely one. As Australians with a dsiability become more and more aware of their rights and obligations for various things such as, but not limited to, access to information, premises, services etc they are becoming more and more assertive, more educated and (slowly) more empowered.

    It is the result of these gradual changes that it is not surprising that the issue of independence and right to one own decision making / freedom will evolve. The old ‘welfare mentality’ model is and should be reviewed.

    As Gary rightly pointed out, people will make mistakes. Able bodied people delve into drugs, make poor business decision (isnt this why we are in the Global Financial Crisis????), gamble etc so people with a disability are no different to such exposure. In fact we are probably spending part of our time cleaning up the mess created by abled bodied people who have been in a position to make decision on our behalf!

    I do however like to raise a factual point in regards to the situation that occured with Victorian Deaf Society. I can honestly say that I was around at the time to sell the building/grounds. I know there there was quite a number of community meetings held allowing them the chance to voice their concerns or comments and this was certainly brought back to the board. Interesting enough the older deaf community members wanted the society to stay whereas the younger generation wanted the society to move and be more financially stronger. I understand also that this issue was up for discussion for at least 8-10 years so it was not treated lightly.

    Issues such as community connection to the buildings, history was always the forefront of board’s mind. However issues such as allowing staff to work in buildings that does not comply with appropriate building standards, conflicts with Occupational Health and Saftey regulations, not being able to modify to comply with accessibility requirements because certain buildings were suddenly heritage listed, the limited to demolish and rebuild certain parts of the land were limited, cost to maintain the existing buildings were getting to ridiculous levels whereby such money would be best placed in providing optimal services to the Deaf community and the list continued.

    The more the Board wanted to stay the more restrictions, barriers and increasing cost arose.

    The decision to sell and move was alwasy going to be a painful one. However it was not the first time that VicDeaf has moved. In fact it was around the fifth time.

    The money that was generated was put to purchase a new building and leasing some of this out to other businesses thereby generating additional revenue which has allowed VicDeaf to chanel their funding in more specific areas.

    Yes I do agree that the move has impacted on the community by things such as 1) not being able to provide car parking as a fund raising activity 2) a central point for social events like the old Jolimont Bar/Club. The latter is being provided with the new VicDeaf site (although I appreciate the security issues arising from this).

    Perhaps as VicDeaf become more financial self sufficient that it can be a little innovative and bold to come up with other business ventures which allow Deaf and hard of hearing people to be in control.

  5. I am fed up with all these people who want to be consulted, yet they are not even members of the organisations that are fighting for them!

    If people want an increase in the captioning in cinemas or theatre, what have THEY done about it! Are they members of the organisations trying to achieve change? Have they sent an email – yes, just one tiny email – to their organisation saying that they would like to be consulted.

    If the answer to either of these questions is no, then can these people please go away, and find somewhere else to throw a tantrum about. If they are not prepared to even communicate directly with, and support the organisations doing the fighting, then they don’t have the right to be listened to!!!

    My outrage at these people is partly due to my years of fighting for hearing impaired and Deaf people in other areas, and being so fed up with all the armchair generals that won’t get in and help me in the fight!!!

    I would like to say more, but I have more work to do to fight for people such as these whingers…

  6. Andrew – I can share your frustration.

    No matter how much you try and truly represent the Deaf and hard of hearing community members, there are always a few that have slipped through the net and would be the ones that feel left out.

    Bit of a damn if you do, damn if you dont situation.

    Real leaders are the ones who not only just talk but roll up their sleeves and do something about it. It is one thing to dream but another to actually to achieve it.

    Unfortunately we do have a few so called ‘leaders’ in this community who dont practice what they preach and cant be bothered to act but are quick to shoot from the sidelines and say that they weren’t involved in the consultation and hence don’t support the decision.

    So it is a two way street.

    I guess the community have become a little too complacent and/or distracted from other factors to appreciate the impact of some of these decisions.

    However the strength is in the numbers. Organisations need to really sell their membership benefits in order to attract and recruit new members. It is more than just getting a newsletter. It entails active engagement, feeling important and valued and having the means to contribute without fear or favour and more importantly for the organisation to REALY know their members and capitalise their knowledge, skills and expertise.

    Keep fighting – keep communicating.

    • I take the view that whether they are members or not we have to do our very best to represent as many people as possible.

      It was a weird kinda week because intelligent and articulate people were coming up to me and pleading that I write something about this or that. Sometimes people fear reprisals or simply do not know how to articulate their thoughts. Other times they simply do not have the confidence to speak out. Others feel they have a conflict of interest so say nothing. And other times, sadly, they are quite happy for others, like me, to take the bullets for them.

      Its so easy to say JOIN and you will be heard. This is poppy cock – Why should they have to join anyway. Most of these organisations are funded by the government to represent ALL not just the ones that pay their membership.

      Who do you join anyway? there is such competition for the membership dollar that you could literally spend over a thousand dollars joining all the different causes that say they will fight for you.

      And then they often waste time saying one is useless the other is better. They spend so much time squabbling one could not be blamed for deciding to spend their hard earned money elsewhere.

      Certainly I understand it is hard to reach everyone. I just done think we are creative enough or serious enough about the task at hand of consulting. Too often a group of four to five people create the spin and the arument and because they are the people that are paid or volunteering for the task think well that they can do that regardless as to what others might think.. I am sorry .. No! … Its about the people and we have to make more effort to reach them.

  7. Andrew. Here there is no rule that says deaf HAVE to be consulted or included or hired, so much for disability laws etc. I wrote an official complaint to the UK’s charity commission complaining deaf were being excluded from the RNID here, they can join that group, the RNID will happily take your dosh, but deaf cannot advance in it, get listened to, or get hired, because the RNID changed the remit that says they are part of the charity aims.

    They are not now legally obliged to include deaf people, so we can moan all we like, we’re out. A number of other UK charities are doing the same, using that loophole to by pass grass root inclusion, it’s not helped by apathetic deaf sitting on their arse who have given up the campaigning ghost, and prefer to stab each other in the back instead.

  8. There are some really stimulating viewpoints being expressed here. I’d like to hear more from Paul about self directed funding ? If not,I wonder if we could get a paper from the Conference as, even if it doesn’t totally fit the Australian situation, the idea is still interesting food for thought.

    Paul seems to be referring to a system that apparently happens through the social welfare system for people receiving government support in some way. What I am thinking about ( and it is a pretty unformed view at the moment so just putting it forward here) is something like the coupon system that is offered to people who are eligible for a Health Care Card. When the HCC arrives it is stuck to a form that also entitles the recipient to free rail travel. The coupon can be redeemed within the six months that the HCC is valid. It is up to individuals if you want to use it or not. A Deaf /HOH modification of that could be that deaf/HOH people are given vouchers that can then be used to access a specific list of benefits eg access to hearing aid batteries, coupons to pay for real time captioning or notetaking services, interpreters or whatever. That person could then use that limited amount of credits to access activities, events or resources such as community education programmes, anything promoting maintenance of mental and physical health etc – things that would fit into the definition of the “social good”. Deaf/HOH athletes could use them to subsidise their involvement in their sport – the possibilitis are endless. If people dont want to access these things that is fine, but for those who do, it opens a door to enable equal access to the huge range of things happening at community level that fall between the cracks in terms of access. Deaf/HOH just arent being accomodated out there at local level and yet until this happens how can any of us expect the same group to feel empowered enough to contribute in other areas ? As Dean says, people start getting active when they are able to see themselves as being important and valued. Having access to things that interest them at community level would give people more of a sense of control and that is what we all seem to agree we need more of. So I’d say forget looking inwards so much , why not focus more on getting to engage more out there at community level but on our terms ?

    I also wouldn’t be looking too critically at the various Deaf /HOH organisations. It is hard to imagine things like captioning succeeding without centralised lobbying and advocacy. All power to the people who do all the unrewarding donkey work to try and move things forward. All we need to do now is, as Dean suggests , start thinking of better ways to harness the all the talent out there that isn’t currently being used.

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