Being Heard – The NDIS

The NDIS got up this week to much fanfare. Rallies were held around Australia. I attended the Rally at Federation Square in Melbourne. The Square was a sea of red as people with a disability from all walks of life cheered on every announcement about the NDIS and let Australia know it is what they want and need. In Sydney an estimated 8000 people attended the Rally where Prime Minister, Julia Gillard, announced the roll out of the NDIS. People with a disability celebrated everywhere.

I have been a strong advocate for the NDIS since 2006. In 2006 I heard the late Dr Paul Collier, wheelchair user and quadriplegic, speak of the self-directed funding he received in Britain through the scheme that they have there. Dr Collier explained how he received money through the scheme and directed it to areas of his life that he felt were crucial. He didn’t need to wait for some agency to decide what he could get, he received his money and budgeted it for his own needs as he saw fit. I remember being in awe of his holiday snaps to Canada where he had used his funds to take a carer with him. It was inspiring stuff.

This is what we are seeking here in Australia. We want a scheme where people with a disability can direct their funding as they see fit. No waiting lists. No waiting to see if some agency believes you are a priority. Just a scheme funded in a similar way to Medicare where people with a disability can receive funds and use these funds to pay for carers, equipment, adjustments to their car so they can get about, funds for accessible taxis and so on. This scheme will open up the world for them. People with severe physical disabilities will be able to have a shower everyday rather than just once or twice a week if they are lucky. Carers who are often into their 70s and still caring for their disabled kids will be able to afford respite care thus greatly releasing the pressure on them.

In previous issues of The Rebuttal we have encouraged the Deaf and hearing impaired communities to articulate their needs as the NDIS is developed. It was true then, as it is true now, that the NDIS has been dominated by the needs of people with physical disabilities, care and respite. Nowhere were we hearing of the needs of the Deaf and hearing impaired communities. Not in the mass media anyway. Our deafness representatives had been active in putting in submissions to various enquiries about the NDIS about deaf needs but publicly stories are dominated by care issues and the needs of people with physical disabilities. It was pleasing to see that at the NDIS Rallies that the Deaf stood side by side with other people with disabilities.  Thus letting our pollies and decision makers know that we had a need too. In the last few months Deafness Forum had also been active and vocal about the need of the NDIS. They believe in “cradle to grave” support for people with a hearing loss. Deaf Victoria has also been extremely active.

After the Rally on Monday I was driving home. As you do when you drive your mind tends to wander. I started thinking about the needs of the deaf and the needs of those with physical disabilities. On the right shoulder was Gary Fireandbrimstone. Mr Fireandbrimnstone is tough, he was telling me there should be no compromise, the needs of the deaf are equal to anyone else in the NDIS and that we should not accept second best. On the left shoulder was Gary Reasonableanddiplomatic. “Surely”, said Mr Reasonableanddiplomatic, “People with severe disabilities should come first, they are a priority and the deaf can wait. We have Employment Assistance Fund to access interpreters and captioning in employment , NABS, free hearing aids til we are 26  and so on”  Mr Fireandbrimstone was having none of it, “Rubbish, our needs are less visual but no less important.” Mr Reasonableanddiplomatic disagreed, “..But we can get by til those with severe physical disabilities have their more pressing needs met.” This was the moral argument I was having with myself.

Now Facebook is a wonderful tool for evaluating moral dilemmas. I decided to put up a rather wordy status and see what responses I would get. The status read, “A question for the Deaf on the NDIS … There are parents who are in their 70s still caring for their disabled kids, there are people with physical disabilities that can get out of their house maybe once a week, there are people with physical disabilities that can get a shower twice a week if lucky … Can the deaf wait to get their needs met under the NDIS …. Are the issues for the deaf equitable … Or should the
mentioned scenarios get priority before the needs of the deaf are even considered? (and yes I am very much being a Devil’s Advocate.)”
 Responses to this from friends generally were along the lines of, “Yes, but only if we have an ironclad guarantee that deaf needs will be met later.”

But one friend took umbrage to this statement and inboxed me. My friend was quite frustrated with me. It’s not often people call me soft in deaf politics but she did. She had this to say, “…You know I admire your work Gary. But sometimes you seem to need a crash course in politics. I can’t see that you have a role as Devil’s Advocate. The deaf need the strongest, single minded advocacy. They have always been sidelined and always will be disadvantaged by having an invisible disability. The HOH regularly deny that they have needs. The wider public do not understand the imperative. Yet communication is one of the single most important human needs. Now is not the time to suggest that others need help more. It is not a good tactic to play “reasonable chap.” Who demands more, wins. Wheelchair activist demonstrated that years ago.”  She will remain nameless and I have enormous respect for her. What is more, she had a point.

So I decided that I would put up another status and see how people responded to her hard-line stance. This is what I said. “Believe it or not I have just been chastised as being too soft in the NDIS approach and I have enormous respect for the person that did it so will try to summarise our discussions … Suggestion is that if we allow the other groups to take the high ground that the deaf will get left behind.. We need to be as loud and demanding as all the other groups , even unyielding in our demands … fair point .. We need stories that hit home and show the cause, in the same way as stories about people with physically disabilities are being prisoners in their own home ….100 Deaf stories that show the need for the NDIS ….What can we do to make the case more prominent??? Cradle to grave wont hack it, we need real life stories, real life examples ….Shock and awe tactics???? We could highlight the high incidence of mental health problems among the deaf perhaps? Dr Hogan on the weekend suggests that stressors of deafness mean deaf people are more likely to be ill and die six years younger than the general populace …Dr Hogan also suggests that our obsession with technological solutions means we forget the human and mental health factors of deafness. What is our campaign missing???”

Responses to this were generally supportive. Particularly of the need to get the stories of the needs of people who are Deaf and hearing impaired out there and understood. But there was one voice from Martin who was more cautious. Martin had this to say, “Not wishing to rain on your parade but … Please let us NOT become splintered in this process. One of the greatest things I got out of the Rally for the NDIS is the fact that we were together with one aim – to have our human rights met in an appropriate way. Yes – I agree that we have different needs and aspirations and yes they often differ disability type to disability type but fundamentally we have the same aim. And that is to be full members of the Australian community by being provided with the appropriate supports that allow us to work, travel, play and fully participate in our community. I believe we must grasp this opportunity for change as the disability community not as the disparate groups representing different types of disability. Yes we do need to be clear about what proper supports that individuals and groups need but let us still keep one voice. My fear is that as did happen during and after the Year of the Disabled Persons we will become fractured and separated along disability types. Once this happens Government will again appease various groups with tidbits but not address the whole issue, ensuring all people with disabilities get their human rights with dignity. Sorry about the soapbox but I am so proud to be a person with a disability after seeing all the different groups at yesterday’s Rally I don’t want that undermined.”

I have enormous respect for Martin too. He has been involved in disability politics since a little bit before when Noah built the Arc. He had a point too. In a single minded push to have our needs recognised do we run the risk of divisiveness and thus fragmenting the successful NDIS campaign? This is the dilemma, how do we push our needs hard without it looking like we are throwing our toys out of the pram. Martin is correct, the one voice is powerful. But not if that voice is not articulating our needs and other needs are dominating. We need that ONE VOICE talking about our needs and providing anecdotes of our needs on an equal platform. Now I agree that at the moment there is a crisis of care support and respite, it is really inadequate and should perhaps take priority early in the NDIS. But that does not mean the needs of the deaf and hearing impaired are less important. They need an equal and powerful voice.

It is worth noting that in the media releases that announced the working groups for the NDIS yesterday there was not one DEAF or hearing impaired representative there.  I later discovered that the intellectually disabled, who make up 62% of the disability population, did not appear to have a representative either. Apparently there is no representative for Aboriginals with a disability either despite them having important cultural needs in the delivery of the NDIS.

Yet on the working groups, as far as I can see, there are six groups directly representing carers and three representing physical disabilities. I have no problem with this but it suggests that the NDIS is being dominated by the issues of people with physical disabilities and care needs. Yet the deaf and Aboriginal groups that make up a significant part of the disability population have no direct representative. I know there are people on the working groups who are empathetic to the needs of the deaf but there is nothing more powerful than a direct anecdote to explain why the deaf have needs coming from someone who has a real life experience of what they are talking about.

I have a real fear too of the rapid rise of the terminology that suggests ‘Significant Disability.’ If you have been following the media releases you will see regularly that the NDIS is being designed for the needs of people with a ‘Significant Disability’. Who is going to decide what defines a ‘Significant Disability’? If the designers of the NDIS are predominantly people with physical disabilities and carers how can the deaf ensure that they have a voice that shows just why deafness is a ’Significant Disability’? Indeed an integral part of the Aboriginal experience of disability is their culture. Who is going to incorporate this into the design of the NDIS if there is no Aboriginal voice?

ONE VOICE … Yes! But that voice must be a voice that expresses the needs of all disabilities equitably. I have real fears that the current working groups will not be able to do that. We need to talk about it now to ensure we are not left behind. Be unyielding in this but at the same time support the needs of all the other groups. All we want is equitable representation, at the moment I do not see this happening.

With respect to all those involved in getting the NDIS up and running, it’s a big job!