Posts by Rosemary McDonald
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I'm wondering why Disability does not warrant a Minister inside Cabinet?
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Access: Disability as a wicked policy problem, in reply to Hilary Stace,
How do we do this Hilary?
The system is set up so only those chosen to speak on behalf of us have a say.
They (this co design group) will claim that they will listen....but Peter and I know from our interaction with one of the members at the Strategy workshop that this simply did not happen.
What caused me most dismay was this person completely and utterly discounting the concerns of someone with very high support needs who put aside his natural inclination to stay in the background and tried to speak out for those with comparable vulnerability for whom communication and even participation are difficult if not impossible.
This was one disabled person in a position of power suppressing another disabled person with no power and no voice.
How do we counteract that?
Just over a year ago Peter obtained a copy of his NASC file. It was ridden with inaccuracies and omissions and in one particular series of documents, statements were made by MOH and NASC staff that were provably false and pointed to at least gross incompetence, if not an actual attempt to create a false impression.
The current Manager of our NASC, after much correspondence on the issue and intervention by an H&D advocate, flatly refused to address these issues.
Flatly...and didn't bat an eyelid when Peter called him a liar to his face.We could make a complaint to the Privacy Commission and attempt to have the record amended...but who has the time?
I could (while we are temporarily housebound and have 24/7 internet and 240V access ) write another post for PA...along the lines of "NASC- Not Working For Us"
and see if anyone reads and responds....but there seems to be a real reluctance for others to join the conversation.I am told that some are frightened that they will draw the attention of the Misery of Health and jeopardise the funded supports they struggled to 'secure'.
They are bastards, really, for creating this environment.
Pushing aside my bitterness Hilary, what do you suggest we do?
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Access: Disability as a wicked policy problem, in reply to Hilary Stace,
...but does anyone really expect there is going to be any boat rocking at this stage of the electoral cycle and with this minister?
Hell yes.
The stage of the electoral cycle and/or the current Minister should have no bearing on the work of this group.
I am not a fool...I understand the influences...but I am over precious 'resources' being wasted on yet another sham consultation.
This is being touted as the definitive review... transformational...and there are updates!!!
And an invitation to send feedback...
There is a desperate need for dedicated boat rockers in these groups...but of course there's a snowball's chance of anyone like that getting within cooee.
Nah. This lot will do their thing and make the right noises and receive their gong from the honours list and those disabled New Zealanders who are highly dependent on the support of others shall remain in their current state of extreme vulnerability and insecurity.
And the co-design group won't give a toss.
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Disability Issues and Associate Health Minister Nicky Wagner today announced the group responsible for designing the new disability support system. (YAY!!!)
“The co-design process is an exciting opportunity for leaders in the disability sector to work in partnership with government to transform the disability support system,” Ms Wagner says.
The members of the co-design group are Jade Farrar, Shane McInroe, Gerri Pomeroy, Helena Tuteao, Esther Woodbury, Lawrence Chok, Tina Lincoln, David Matthews and John Taylor.
“The current system doesn’t work well for all disabled people, (no shit, Sherlock) so there’s a great deal riding on this co-design phase — it’s a once in a lifetime opportunity to provide better support and better services for disabled people and their families. We need to get it right,” Ms Wagner says.
Forgive me (or not, I no longer care) if I am more than slightly cynical of this latest attempt to "get it right".
One of those on this co - design group was the cause of Peter flatly refusing to participate in the second round of consultation workshops on the new Disability Strategy.
This person completely dismissed our concerns about the Part 4 amendment to the PHDAct(2013) and it's wider ramifications regarding the denial of entitlement to funded supports.
Yes, this person lives with disability, but requires little in the way of hands on support. This person also is supported by ACC, which gives those eligible entitlement.
This person will have not a single clue of what life has been like for Peter for the past 46 plus years.
This person dismissed Peter when he spoke at the first Disability Strategy meeting about how he has never felt so insecure or vulnerable with regards to access to funded supports and the right to chose who provides those supports. That he has never felt so afraid that some petty power- craved bureaucrat will arbitrarily decide that he no longer has the right to live where he chooses with the support that he needs should anything happen to me.
This person will probably presume to speak on behalf of those like Peter who require a very high level of hands-on support...which is wrong.
SSDD.
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Access: Family Carers Case – Five Years On, in reply to Angela Hart,
It stinks
You smelled it too?
Sitting there in the Bus, Up North, listening to the accolades and celebrations thinking 'my god, do these people really believe that all is now going to be well in Old People and Cripple land? Do they honestly think that the $$$ are going to flow like waters from a burst dam to rectify the wrongs and inequities?'
Quiet! Cynical Old Bat!
However there is much that should be writ about this particular resolution to a(nother) long running court battle...but later, maybe.
I will make one observation though...
The Bartlett case would have gone nowhere without the 100% backing of the respective unions.
The Atkinson case was fought with commitment and vigour by the OHRP and the HRC but had NO support from the two organisations charged with representing the interests of people with disabilities (DPA NZ) and family carers (Carers NZ).
No support until the passing of the Part 4 amendment when there was a belated and half- hearted 'outcry'.....
Too little, too damn late.
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Access: National Standards and the…, in reply to Hilary Stace,
Shocked (although I shouldn’t be by now) to hear that primary schools receive NO resourcing or materials for school music. Apparently nothing since 2010. Yet we have this proud history of encouraging and supporting the arts and creativity. So sad.
The other day we picked up a couple of Dutch hitch hikers in the Far North. During our shared journey we chatted and it turned out that the young lady worked as a dance and music 'teacher' in Dutch schools. (I write 'teacher' because the impression I got was that her job was to teach basic music and movement skills so the kids had the tools to be greative under their own initiative.)
Anyway...this project is aimed at all Dutch children and has been of especial benefit to children with disabilities and within that group of particular benefit to kids on the spectrum. The Dutch government was not funding schemes such as this...this is a newish initiative, and when I asked what prompted the Dutch Government to begin funding this dance and music program our Young Fellow Traveler had a wee think and said " the Science told them it would be good for the children." (Yes, she did verbally capitalize "Science".)
So there!
(I would have loved to discuss this at greater depth but they had to get on their way and its a tad difficult to hold a conversation above the rattle of a diesel engine while negotiating 45 kph bends! However, one interesting point she made was that she had seen only few people with obvious disabilities out in the community while traveling in NZ. )
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Up Front: For Your Own Safety, in reply to ,
Maybe we could talk about toileting in boats some time?
I'm up for that as long as I can count my housebus (complete with macerating marine toilet) as a land yacht.
I highly recommend that folks experience the genderless long drops at DOC Camps.
Very good reasons opt for sitting to pee rather than standing and looking down....
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Discrimination is much more tricksy these days than it ever was. People have learnt that it is not ok to discriminate, so they are much more clever about it. Now, we all know it’s happening but it is done behind closed doors and out of earshot of anyone who might be able to corroborate our stories and experiences.
God, it lightens my day to read words like this. Cool breeze of truth.
Thank you Chelle.
I’ve been on the other end of a phone call from a woman who wanted to give me a job in the intersecting disability and education sectors. She had to explain to me that the two men on a panel of three had decided to award the job to a young able-bodied white man who personified exactly the person I had fantasised myself as being when I was a child. She offered congratulations and implied that it was progress that I had got so far.
Seems trite to say that it's their loss Chelle...but it is.
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Access: Privacy and the right to consent…, in reply to Sacha,
Which is why they want to track individuals over time – so they can tie contracted payments for long-term individual outcomes rather than single interventions and population-level results.
They intend to apply privatised insurance industry actuarial models across all social services. Very similar to how the US health system is organised – ie: a costly disaster. This is the endgame Bill English, Steven Joyce and Paula Bennett have been working towards for many years now without effective opposition. Time to step up.
Yes, yes, yes.
Nail squarely on head Sacha.
The buggers have an agenda.
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Hard News: Hep C: When doctors do the…, in reply to Lilith __,
I just wish the health administrators could do it!
Brian Easton does what he does best on just that issue here.