Disability Hackers Unite!!!

You're going to call me what

The day before yesterday, Sam Connor started a new post on the NDIS website yoursay.ndis.gov.au (cached here), in response to the new name given to the NDIS – DisabilityCare.

The National Disability Insurance Scheme (NDIS) is to get a name change to ‘DisabilityCare Australia’ following the NDIS Bill passing the House of Representatives in Parliament.

The Minister for Disability Reform Jenny Macklin said that the new name reflects the principles of the NDIS that all Australians with significant or profound disability receive the care and support they need, regardless of how they acquired that disability.

“The name has been chosen based on consultations with people with disability, their families and carers, peak organisations and the general public,” Macklin said in a statement.

Macklin said that the new name is just another step towards the care and support of the legislation which is about to become real for Australians with disability and their families.  (Pro Bono News).

Sam’s post stated:

THERE’s been quite a lot of negative feedback about the proposed new name for the NDIS this morning.

We understand that the idea was to reflect what it is about – disability + care and support = disabilitycare and also to reflect the Medicare brand. But in the disability sector, the word ‘care’ holds different connotations. It reflects a charity or medical model approach rather than a social approach, and not an entitlement model. ‘We’re going to care for you, you poor things.’

Probably not the intent, but that is what is being heard.  Not everyone agrees with this – some parents have said ‘we don’t care what it is called, as long as we’re supported’.  But others say its not the disability that’s being supported, its the person and their life. 

Do you agree?  Does the new name reflect the intent of the NDIS, or not?

I, along with 16 others, had our say.

My Say

People with disabilities are not impressed with the name for a variety of reasons.  They also dispute the claim by Jenny Macklin, that they were consulted at all.

Yesterday, someone saw fit to take it down.

And now, they have blamed Sam Connor for being a hacker.

The federal government quietly announced the name change on Monday.

The name change has not been well received in some quarters of the disability sector and some people with disabilities are angry they were not consulted over the rebranding.

The official NDIS website had a `have your say’ forum about the name change, but it has since been removed.

The link now says “The page you were looking for doesn’t exist.”

A spokesman for Disability Reform Minister Jenny Macklin told AAP the NDIS website had been hacked and an “unauthorised person” had posted the forum.

And so I sit here.  Laughing. My. Fucking. Arse. Off.

I adore Sam and she is many wonderful things.  I have no doubt that she can create a mean spreadsheet among many many other talents.  But she is no hacker.

No, there was a tab you could click to start your own discussion, and she utilised this facility.

So much for the cries of “we want to hear what you have to say” that come from our government.  Apparently, they only want to hear what you have to say when you agree with them.

I keep trying to tell people we don’t have free speech in Australia, but no one believes me…

What started with a very low-key announcement (so low-key that I have had trouble finding anything about it in mainstream media), has now turned into something else indeed.  Bet your arse, mainstream media are on it now!

This whole situation is appalling.  While most of us disabled folk didn’t like the name, I don’t think the fact that the government had gone ahead and chosen something truly craptacular was all that surprising in itself, and stating that you have consulted when you really haven’t is pathetic.  But trying to save your arse and prevent some bad PR by accusing someone of breaking the law is a whole other bastard act, and Jenny Macklin should be ashamed of herself!!!

If you would like the opportunity to have an open and frank discussion on all issues surrounding the NDIS, where comments are not deleted because someone got their panties in a twist, feel free to go to the FaceBook Page NDIS Grassroots Discussion.

If you are interested in what people had to say, I have copied and paste it below.  Thankfully I have a tendency to just leave my computer without closing all my tabs, and I still have it open (until my next Windows update restarts my computer without telling me >.<).

 

Welcome back LindaMH

Is the new name ‘DisabilityCare’ set in stone as THE National Disability Insurance Scheme name?

by Sam Connor 18 Mar 2013, 11:07am Share via Facebook Share via Twitter Share via LinkedIn Share via Email

Baby saying 'you're going to call me WHAT?'

THERE’s been quite a lot of negative feedback about the proposed new name for the NDIS this morning.

We understand that the idea was to reflect what it is about – disability + care and support = disabilitycare and also to reflect the Medicare brand. But in the disability sector, the word ‘care’ holds different connotations. It reflects a charity or medical model approach rather than a social approach, and not an entitlement model. ‘We’re going to care for you, you poor things.’

Probably not the intent, but that is what is being heard.  Not everyone agrees with this – some parents have said ‘we don’t care what it is called, as long as we’re supported’.  But others say its not the disability that’s being supported, its the person and their life.

Do you agree?  Does the new name reflect the intent of the NDIS, or not?

Jackie Softly Comment 1 18 Mar 2013, 2:00 PM

Please tell me the name ‘DisabilityCare’ isn’t set in stone as the new name for the NDIS. I’m at a loss to see how a scheme based on rights, entitlement, empowerment and inclusion has ended up with a name that screams outdated, disempowering charity model.

I hate the name, but I worry more that the name reflects the way the powers that be see it. Now that is very scary…

Eam Comment 2 18 Mar 2013, 3:02 PM

This is an awful name….exactly…sounds like a charity or medical model. The name IS important because it sends a powerful, oft repeated name to society. This isn’t my area of expertise to come up with an appropriate name, but our family is very clear that this is not it. The name will influence a lot how well the NDIS can operate. I am fed up with reading ‘begging’ stories in places like tccp wa Brand News asking for donations…this name suggests the same kind of thinking.

Glee Comment 3 18 Mar 2013, 5:57 PM

The name STINKS. I don’t want Care! I want Support! Disability Support. Disability CARE smacks of patronising charity model crap. When you call it “care” people then call your Support Workers “carers” and they adopt that title readily cos it goes with “aren’t you wonderful how you care for THOSE PEOPLE”. With the praise comes a halo which the Support Worker readily dons and shows off at every opportunity. They polish their own halo and other people admire it often and polish it too.

I don’t care if the new name matches Medicare. That is entirely irrelevant. It is just another stupid pigeonhole!

Were we asked what name we wanted? Nup. DO NOT CALL THE SCHEME Disability Care! DO NOT!!!

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Ricky Buchanan Comment 3.1 19 Mar 2013, 2:20 PM

I agree 100% with what Glee said. It *is* a crap name, and the implications of charity and patronising hideousness are awful.

What’s wrong with “NDIS”? It’s been in the national news for over a year now, and other names like “TAC” and many others show us that the public is perfectly able to understand acronyms!

Glee Comment 4 18 Mar 2013, 5:59 PM

hmm if there was bad language in the comment I just posted (as it is telling me) then I don’t have a chance to change it. bleah. And maybe my bad language is needed and really shows how I feel. Goodness me!

Glee Comment 5 18 Mar 2013, 6:19 PM

Oh dear I thought I had to WAIT ten minutes before I could edit my bad language post!! nup. I HAVE ten minutes to do it! now it may take a person with a disability MORE THAN 10 MINUTES to edit a post. If this is an example of the CARE we will get then I’m worried!!

Here is the original post that I posted with “potential bad language” which was another word for what comes out when you go to the ladies powder room. I forget that BIG BROTHER IS WATCHING ME AND WILL SOON HAVE ANOTHER KIND OF CONTROL OVER ME. Lets see if the … word passes the word police. sigh No it didn’t. try again then…

Oh dear now I have lost the original post.

In short: Disability Care as a name sucks. It smacks of patronising charity model what comes out when you go to the ladies powder room! I don’t care if it matches Medicare. I want SUPPORT. Care is nice but optional. sigh grrr

No it doesn’t like the medical word for what comes out when you go to the ladies powder room either. For goodness sake! It is JOLLY annoying! Bother! I am somewhat annoyed!

Todd Whitehead Comment 6 18 Mar 2013, 8:10 PM

What’s in a name? Well a lot is the easy answer. The NDIS is supposed to represent a new way of thinking and you would hope the branding and name would convey that. It is supposed to be a paradigm shift in terms of policy, cultural, funding and perception. The proposed name is not only not that, it is the complete opposite of that. The responses here and elsewhere should make that clear.

Its not too late. Put the cookie cutter/policy clipart down and engage with the people desperate to see the promise of the NDIS realised.

Ingrid111 Comment 7 19 Mar 2013, 10:24 AM

My young support worker this morning was surprised by the new name. Her comment was “care is such an OLD word!” We came up with “Abcare”. That’s on line with Medi[cal] Care and also focuses on our abilities.

And also ENABLING us…

Ingrid111 Comment 7.1 19 Mar 2013, 10:36 AM

And it’s shorter than “DISabilityCare! GRR!

Glee Comment 7.2 19 Mar 2013, 5:18 PM

I don’t thing Abcare is a good idea cos it will get turned into ABnormal Care cos people won’t automatically equate the prefix “ab” with ability they will equate it with abnormal. Cos you know how they are!

Sam Connor Comment 8 19 Mar 2013, 10:58 AM

Some comments from the discussion groups

S

The word ‘care’ has its roots in the Old English word ‘caru’ and it means to mourn or lament. It is also dangerous because it is not an auxiliary verb – i.e. we help someone to… we support someone to… but we just care for someone. There is no implication that the person has freedom, will or rights.

T And to anyone who thinks the name doesn’t matter, just watch and see. There is much in a name. It reflects what people understand, envision, and expect. The naming of the NDIS ‘DisabilityCare’ reflects the poor understanding of Government of the great hope for the NDIS and how to model that intention. This was always going to be a challenge for Australia’s model of public administration, and it could be an exciting opportunity to really do thinned differently.

S I asked the NDIS person who contacted me this morning what the word ‘care’ was supposed to encompass, did it mean the whole of the NDIS system? Did it mean the services as well or the approach to disability? And the answer? “Ill get back to you on that.”

L When I’m sick I do need and want to be cared for. When I have a disability I want the support and equipment I need to care for myself.

The wording will affect how people treat us. Ask someone working in marketing or advertising how strong our subconscious can be!

L This is appalling. Care has medical implications and does not relate to current / future planning, education and supports that are designed to assist people in a positive way. 150+ years ago education was legislated as a right for the population. Those who ‘could’ went to mainstream and were supported by the education dept. Those who ‘could not’ and needed ‘care’ were placed into segregated institutions under the health dept. Thus begun the many years of segregation many of us are aware of. Any word but ‘care’ please. Its the bureaucrats going for a short sharp acronym.

How about DisabilitySupport.

F Personally don’t like “care” – its old fashioned and sounds condescending, although that’s not the intent. We don’t need care, we need support to participate and improve opportunity. But understand that govt thinks new name will make it easier for public to understand, which could be important if its a key election policy

I How about ‘CripCare’ if they want a snappy name? GRR!

N Agree F, and using “support” will confuse the general public with income support – ie welfare – and they will then associate that with all the Today Tonight stories of welfare cheats. I think associating it with an existing program that is generally accepted is a necessity in terms of taking the next step and having this both rolled out, and publicly accepted. Remember we could be arguing the merits of this to the general public as the LNP tells them we can’t afford it post September.

E b So who did they ask before doing this?

E Why don’t they call it the National Disability Insurance Agency, which is what we have been calling it, and fits more closely to the general public’s understanding of what it is in relation to the NDIS.

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Katharine A Comment 9 19 Mar 2013, 12:20 PM

I am disappointed in the choice of words by the government on several occasions in the last week – reverting back to ‘tolerance’ in the National Cultural Policy and now DisabilityCare.

I would much prefer DisabilityDirect – capturing what it is you want people to be able to do with their supports and their lives.

The DisabilityCare label had a very soft launch so I hope money has not been invested in branding and that you consider a change.

Katharine

linda Comment 10 19 Mar 2013, 12:35 PM

I think Disability Care is absolutely awful and patronising. I am stunned that this is the best name they could think of and wonder just who they consulted with to come up with it.

I had hoped the NDIS would live up to the rhetoric of people with disability having control of their support and their lives.

“Care” implies something totally different based in charity and burden language.

It is vital we get the language right. The NDIS name should convey empowerment, equality and inclusion. If they can’t convey that then at the very least just stick with NDIS.

By the way I heard they wanted to change the name of the NDIS because of confusion with NDS, ie the peak body for disability services.

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Phineas Comment 10.1 19 Mar 2013, 1:56 PM

I agreed with alot of the above.I can see what the Government is trying to do liken it to Medicare & the good name that has in the community.However I don’t think they could’ve come with up a more patronising name Reinforcing the belief that people with disabilities require care.As Katherine said its a soft launch,but I think it misses the mark.

Disability autonomy will be a good name thought it describe what it is.DirecturDisability may be another good one.or just stick National Assurance scheme.

While the name is important to get right.Lets remember, its the detail & rigour of the scheme that is of upmost importance to get right,so that the Majority of Australians with Disabilities can benefit.

Ricky Buchanan Comment 10.2 19 Mar 2013, 2:22 PM

I have to agree with Linda about the consultation too – how many people with disabilities and others with lived experience actually liked this name? And if you *didn’t* consult a lot of PWD/families about it then the government is still sadly missing the point in a big way …

Jackie Softly Comment 11 19 Mar 2013, 1:55 PM

Katharine A, I like your suggestion of DisabilityDirect, which to me suggests people directly involved with the NDIA and also directing their own services and supports.

Sue Egan Comment 12 19 Mar 2013, 3:48 PM

DisabilityCare takes me back to the days of Crippled Children and Spastic Children or the “R” word that the US is still grappling with at the White House level, where Social Workers (happy day people!) made decisions for people without ever consulting the person or the child. Been there done that!

Why, when we are seeing one of the biggest changes to disability since the International Year of Disabled Persons in 1981 do we now see a huge backward fall, calling the NDIS a ‘care’ scheme. It is not. The scheme will not care if my rent is too expensive, or even care if I want to move out of my parents home, or if I want to go to university but there is no transport or access to suit me.. That is not the role of the NDIS. The role of the NDIS is to support us as people with disability (or the parents of children with disability) to achieve our own aims and our own destinies, without someone looking over their shoulder and ‘caring’ for us, and ticking boxes to say “I cared” this week!

Where is the care when someone at 65 years is already ineligible for the NDIS, yet these people have the same disability at 64 as at 65 but cannot receive this same ‘care’ we are reassured is available to those who have a disability and are registered with the NDIS. This is government speak, and if we are really serious about changing the nature and acceptance of disability in Australia, we really need to look at the words we use first, because these are the ‘door’ that tells the story of the way people are treated.

LindaMH Comment 13 19 Mar 2013, 6:59 PM Edit (0m 00s)

People with a mental illness are quite often treated as though they are pets. They are told what to do, when to do it, and sometimes, by golly they must do it, or they end up in hospital/shackled/etc.

For many with a mental illness, the word “care” is going to bring forth the same connotations as “mental health care” – that is, that we are someone to be looked after, we are someone to be told what to do and when to do it, and it’s ok to treat us badly if we misbehave.

It is ok to treat us as though we have no say in our own lives. It is ok to treat us as children.

People with a mental illness do not want to be “cared for”. We have had enough of that!!! We want autonomy. We want to run our own lives, in our own way.

And as someone who also has a physical disability, and a neurological difference, I can say that things are pretty much the same in those cases too. Some professionals tell us what to do and how to do it, even when we know better.

The best professionals work in consultation WITH us. I didn’t lose my brain, my personality or my will to live my own life when I lost my mobility.

We need support, not parenting. We need the opportunity to run our own lives the way we see fit – the same right that everyone else in this country is afforded.

The very name gives people who work in the industry an idea of what their job is. It gives the public an idea of what the system is about. Please don’t let the system be about “care”. Let it be about “autonomy”. I don’t ever want a support worker under the illusion that they can walk in and tell me what we are doing today. I want them to walk in and ask what we are doing today. Nor do I want the public to think that their taxes are going into a system that is about “benevolence”. I want the public to start realising that their taxes are going into a system that is about human rights.

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Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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2 comments on “Disability Hackers Unite!!!
  1. Glenda Lee says:

    Being a person who was part of the comments on Samantha Connor’s new thread on the NDIS Gov site this is the true story of what happened. The Gov say that she was unauthorised and hacked. So not true. Sam did post some unidentified comments from FB. this is apparently against the rules. The Gov did not then just remove that single post – they removed the whole discussion.

    Later after the removal I posted some of the original comments on the Your Story part of the NDIS site, 2 by other ppl and my own original one. I did this as a means of getting around this hideous censorship. The 2 posts I submitted with others comments were not put up cos they were not my words and I was sent 2 emails telling me that they were not allowed. Fine, I broke the rules.

    But why then did they not do that with the 1 offending post that Sam put up? Remove it and send her an email. Instead they censored the whole ‘legal’ original post and ‘legal’ comments by removing the lot and sent no emails to inform us. Something very tricky going on there in the Government Dpt. Trying to shut the crips up methinks.

    And I know that several peak bodies AND the South Australian Government told them that the name Disability CARE was offensive and inappropriate. yet they still went with it.

    are they really listening to us? I think NOT!

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Pissed off since 1995. Mad as a hatter since way before that.

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