Speak Up, or Remain in Silence!

Last week Stella Young wrote a scathing article directed at leader of the opposition, Tony Abbott. Mr Abbott has publicly stated that he would put any further investment in disability support through the proposed National Disability Insurance Scheme on the back burner until Australia was back in economic surplus. Ms Young quite rightly took offence and pointed out a few home truths to Mr Abbott, ” A stranger will come to your house and shower you. Not daily, of course, because many people who require that kind of personal support are only entitled to two showers a week under the current system. For the other days you’ll feel grotty and reluctant to leave the house, ” Ms Young pointed out Australia’s shame, that they rank last of all OECD countries in the provision of disability support.

Apart from the obvious issue of human dignity, not investing in people with a disability properly means that they cannot contribute to society. They can’t work, they can’t get about, they can’t attend the cinema, they can’t buy things because they can’t earn a good income through employment. They are a wasted resource. This is an estimated 20% of Australia’s population.  Sure not all have disabilities that require significant investment but many millions do. In short to tap into this human talent and reap the economic benefits requires a significant investment.

And this is where the National Disability Insurance Scheme comes in (NDIS). The concept of the NDIS is simple. The idea is that Australian’s, similar to Medicare, contribute a percentage of their income to pay for disability support. This might be .05% of a person’s salary every week which is then channelled back into the NDIS to provide the funds for disability support. It is estimated that upwards $6 billion a year is required to support people with a disability to access society. Currently the Government does not even provide half of that.

The current Government has asked for 7 years to roll-out the NDIS properly. Many say this is too long. The opposition do not even want to consider the NDIS until Australia is in surplus again. Sceptics point out that for the most part, when the opposition was in power, Australia was in surplus but they still did not invest in disability properly. So why should Mr Abbott be trusted now.

The bottom line is Australia needs to increase investment in disability drastically to un-tap the full potential of people with a disability. The NDIS is crucial. For deaf people the NDIS could, potentially, bring untold benefits. The problem is that the deaf sector has been very quiet in the debate. So quiet that they run the risk of missing out on the benefits of the NDIS altogether. Debate on the NDIS has been very much dominated by the issue of care support. By this I mean home support and respite for people with severe physical and intellectual disabilities. Don’t get me wrong,  care is a very underfunded area and needs all the attention it can get. BUT the NDIS needs to be about more than just care and respite. The Deaf sector needs to be more actively involved in the development of the NDIS or run the risk of missing out.

To understand just how the NDIS can benefit deaf people one needs understand that the NDIS funding , if all goes to plan, will be very much self-directed funding. What this means is that the person with a disability will receive the funding and, within certain guidelines, will decide how that funding is to be used.

What will basically happen is that the NDIS will be set up as an agency. Eligible people would apply to the NDIS for funding. Most likely they will have a choice. They can opt to have a person assist them to organise the supports that they need OR they can opt to receive a lump payment every year and direct that funding to buy the services that they require. Of course they would need to demonstrate, probably by way of invoices, that this money had been used appropriately to purchase the right types of support and show that they are not abusing the system.

Let’s pretend the NDIS has been set up brilliantly and provides for everyone with a disability including the deaf. Peter Deafapple  goes to the NDIS agency and outlines his needs.  He has social needs every year for things like attending parties, weddings, funerals etc. He wants to do some extra study and needs live captioning for that. He has a cochlear implant that costs money to maintain. He needs technology like smoke alarms in his new home. Of course this pretend NDIS is flawless. Peter has an assessment and it is estimated that his needs for the year are $75 000. He gets that amount of money which he must use to meet his needs as identified. Some of that goes to an accountant to look after the money, spend as needed and provide the necessary evidence to the NDIS agency.

Peter uses his funding as needed. He attends a wedding and books an interpreter. The interpreter agency invoices Peter’s accountant, who pays the bill and forwards necessary paper work to NDIS on Peter’ behalf. Through the year Peter’s Cochlear processor dies and it needs replacing. Peter has it replaced immediately using funds he has received through the NDIS. He organises his captioning at University without the need of having to apply for it through the University disability support. He is in complete control and directing his funding as he sees fit.

Not only that, Peter has POWER. He does not have to beg and plead with his local Deaf society to get access to funds to attend his dearly departed grandmother’s funeral. He calls and organises it himself. Agencies that provide services must develop services to meet what PETER and other deaf people want at competitive prices.  They do Peter’s bidding rather than the other way around. If the service is not up to scratch Peter simply goes somewhere else that provides better value for money. No applying for vouchers, no hoping that there are enough funds to provide the service that he needs, no being patronised and made to feel grateful. Peter is THE MAN.

Imagine you are a parent. You want the best Auslan tuition or speech therapy that you can get for your child. If you want to ensure your child gets the best access to language development that is possible there will be no need to worry whether the Education Department can spare an overworked speech therapist once a month. There will be no being at the mercy of some service that decides that Auslan tuition is too expensive and provides it only as they see fit. The parent has the power to direct their money as needed. The services either meet the needs of the parents or go out of business.

These are examples of what is possible if the NDIS is developed properly and considers the unique needs of all people with a disability. This is the dream. For now it remains a dream, especially for deaf people. The deaf sector has not yet fully grasped the potential of the NDIS. It has been largely silent and needs to speak up. It must become more actively involved in the NDIS debate.

As things stand the NDIS debate has been largely driven by carers. This is understandable in many ways. There are carers in retirement who are still looking after their adult children with a disability. Funding for respite care is minimal and is nowhere near enough to meet demand. People with physical disabilities, as Stella Young pointed out, are at the mercy of an underfunded system and cannot have their basic hygiene needs met. There are young people with a disability being cared for in nursing homes for the aged because they system simply cannot meet their needs. It is shocking.

While these needs are extreme it does not mean that the deaf have to miss out. To tap into the benefits of the NDIS the Deaf sector has to become more actively involved in the NDIS debate. Recommendations have been made, for example, that education and employment needs not be part of the NDIS. For working age people who are deaf this is arguably the biggest area of need. While there are some great programs in employment, these programs do not come close to meeting the real need. Potentially the NDIS can help fill this gap. This is part of the reason why the deaf sector needs to find its voice in the NDIS debate and fast.

Deafness Forum has made several statements about the positiveness of the NDIS. Most recently, in August 2011, they spoke of the need for Communication access because, “Communication access is life” President David Brady spoke about the impact the NDIS could have on the purchase of digital hearing aids.  There were noises about the need to provide access to WORK, but the initial recommendations of the NDIS by the Productivity Commission is that employment not be included as part of the NDIS.

While these are positive statements by Deafness Forum it is not enough. We in the Deaf Sector need to be thinking about the best way the NDIS can meet our needs. Pacifying statements of intent and support to the Government, while useful, are not enough. To benefit from the NDIS the Deaf community needs to find its voice in the NDIS debate NOW or we may all end up remaining in silence.

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4 thoughts on “Speak Up, or Remain in Silence!

  1. The issue of support is one of contention, some want it, some resent the implication deaf need support, and some cannot get by without it, whilst the majority do not seek it, relying primarily on family or friends. Basically unless you see demand then no campaign will work. There is an groundswell of view by the few services that are being offered to deaf that the take up is nil in many respects as deaf stay with what support they already have (family). This has led to statements “Why bother offering support ?” Suggestions the system refuses to allow deaf choice to use family so demand is created was opposed, so how on earth can you create demand for those who will really use it ?

  2. But MM your definition of suport is very narrow. Support, services, goods etc etc is what an NDIS can assist you with. Parents with deaf kids that need early intervetion, cochlear implantees that needs to replace technology, safety equipment in the home….. Interpreter for the chirpractor and the like .. all could be covered by self directed funding … Got to go beyond the traditional view of HELP to a view of independence and power.

  3. The UK has a LAW that enables deaf to access services and health areas, the issue is nil demand FROM deaf, which is the point I was making and the fact they will not create demand to make a law viable whilst they continue to rely on (A) Charities that themselves live hand to mouth and (B) Deaf people not using what is already there.

    Insure you get access/support product replacement ? the laws exists already here. If you get CI’s or aids (hearing!), from the NHS then its covered free, if you go private then insurance against failures is an option too. Tthis is the home of ‘the state provides’ ! I think the overrated term is ’empowerment’ ? which to my mind has no place being dependent on a law not working. It only becomes empowerment when the deaf person demands and gets rights and has total control over that, and we’re a million miles from that happening.

    welfare and other benefits deaf get as well as all costs to get educated etc could be handed over to the control of deaf people, but the state will never go for it here. Indeed the word in the UK is deaf are going toget it all taken away. Perhaps OZ deaf unite, here they couldn’t give a fig what happens.

    • Yes, but not the case in Australia. Our access to hearing technology cuts off at 26. Then comes from your own pocket. Employment programs are limited restricting opportunities. Early intervention programs are nothing but bandaid treatments. Perhaps people in the UK not using programs might be doing so because of lkack of awareness. WQhat ever the reason Australia ranks last in disability support among OECD countries. Things have to get better.

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