Posts by Rosemary McDonald
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Peter has had a few tumbles out of his wheelchair over the past 46 years... but it was the last one, a few months ago, that seems to have rattled him a bit. A combination of a new back on his chair (slightly, and almost imperceptibly more upright than before) and a too quick a turn after getting off the hoist in the Bus and it was all over. Sideways roll with his forehead hitting the crack in the concrete a fraction of a second after he extended his arm to break his fall. There is clearly a god assigned to such as Peter, as instead of broken bones and a head injury he came off lightly with a stunning black eye and lost facial skin. Even the 3cm diameter chunk he excised from his temple healed without much incident. It takes at least two, preferably three ABs to get himself back in his chair.
However...he got a fright. I got a fright. The offspring who happened to be home and was unable to assist when Peter's cry for help went out got a fright.
We've all had to learn to trust him again. Confidence lost, or even simply bruised, takes a while to recover.
Kia kaha, Chelle.
PS...a young lad with SB of my acquaintance was showing off to his schoolmates just how flexible his hip joints were not being fettered by any muscle tone. Threw one leg behind his head and snapped his neck of femur. They did operate.PPS....Peter says to tell you that he broke his hip years and years ago and didn't know until routine X rays back in 1998. Despite being a tetraplegic he gets quite severe 'pain' in that joint. However...the Green Fairies make a balm...of which we have availed ourselves...and pain is controlled without the nasty drugs.
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A member of the disabled community and former chief executive of the New Zealand spinal trust, Ben Lucas, described the tweet as unfortunate.
Ms Wagner had slipped up but her apology was heartfelt, Mr Lucas said.
"She is absolutely passionate about disability and making lives better for people with disabilities. Nicky is a yachtie herself and she just loves being out on the water.
"I think it's just an unfortunate tweet that maybe shouldn't have gone out," he said
Not having heard that interview on the radio yesterday I got one of the offspring to convey the gist by phone. " Who is this butt-snorkeller?" offspring asked.
Good question, child. Back in 2013 I was ejected from the NZ Spinal Trust facebook page for referring to the Misery of Health as, well, the "Misery" of Health. Or it may have been "the Miserly". Young Ben phoned us at home to tell us that they would not allow such disrespect as the NZ Spinal Trust was in receipt of funding from the said Miserly. Peter was still abed so the phone was on speaker...we all heard what he said. He later denied it.
Ho hum. No wonder the disability community is struggling... running to stand still...
Great post Fiona.
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Access: Privacy and the right to consent…, in reply to Hilary Stace,
Social Investment can be code for “we are too mean and individualistic to invest in schools and communities so we are going to target and stigmatise a small minority of individuals and families, and then expect them to gratefully raise themselves into the middle class, or punish them more if they don’t”.
Bang on the mark...but you forgot the whole "building resilience" line.....some of us are so resilient we no longer have any expectations of the disability support system.
A win!!!
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Hard News: The Oncoming Day, in reply to Jason Kemp,
The apparent staff bonuses for doing that was the surprise.
Many, many years ago at a Disability Support Services Consumer Forum I asked whether NASCs received a bonus from the Ministry if they came under budget for the year.
Went down like a cup of cold sick with the Ministry staff up the front...round of applause from the assembled disaffected.
(They don't have these regional Consumer Forums anymore...can't think why.)
Seriously though...there must be some kind of financial incentive.
It's simply not human to keep denying folk salvation when its within reach.
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Hard News: The Oncoming Day, in reply to Jason Kemp,
– the government is here to help you but if the internal policies of the agency could limit or even prevent access – that is their real policy.
I stumbled across this the other day while seeking something else...
Disability support services
The Budget includes new funding of $42.296 million in 2016/17 and out-years for
disability support services. We heard that in June 2015 a shortfall of $45 million was
forecast for disability support services. We were told that the final shortfall was not as high as forecast because the uptake of the Funded Family Care policy was lower than projected.A response to supplementary Estimates questions states that the expected shortfall of $45 million for disability support services has been significantly reduced because of careful demand management by the Needs Assessment and Service Coordination (NASC) services.
We asked whether any policy changes lay behind this management of demand. We
heard that the sleepover and funded family carer settlements and the new model for
disability support services had changed client and provider behaviour, resulting in cost increases. However, NASC services have saved $8.2 million by examining what services are delivered and to whom; also, some of the cost pressures were less than expected.
We subsequently heard that disability support services are not forecast to be overspent at year end. Some of us are not satisfied with the ministry’s explanation as to what the shortfall was and where the money came from to fill the shortfall.The bold is mine, as is the shit formatting....
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Access: Patients X, Y and Z, in reply to Hilary Stace,
Do we think the ‘system transformation’ of disability support will prevent such things happening in the future?
No.
But ok...lets be fair...here are direct links to reports on the three meetings so far.
They are still working on the terms of reference and spent some time stating the obvious..
We need to design the system to meet the needs of a diverse disability community
We discussed ‘diversity factors’ – a design tool that helps us to understand the breadth of the community. These are expressed as a range with an extreme at each end and lots of people in between. Some of the diversity factors we discussed were:
Limiting options to creating solutions. Some disabled people and their families lack confidence and focus on what they can’t do, thereby limiting the possibilities, while others search for and create solutions and options
Risk adverse to developing independence. This ranges from risk adverse and protective parents and carers, to those who support people to be independent and make choices about their life.
Willingness to engage or trust the system. There might be issues of fear, privacy, resistance about being labelled, tikanga, hoha, distrust of the Crown, discomfort about the assessment process or they live with dysfunctional families. Others have trust in the system and the people involved
Sense of identity. Some disabled people do not yet know where they belong while others have a strong sense of identity and of belonging
Socially isolated to strong peer networks
Visible impairment where other people accept your need for support compared to invisible impairments
Impairments fluctuate, needs are unpredictable and changing, while some impairments and needs are stable
Financial options. The type of life disabled people experience can be limited by a lack of finances which reduces the options available while others are financially stable and have more choice
Use of technology. Some disabled people have no access to, or any confidence with technology while others are at ease and able to use new technology.This is entry level stuff.
I'm not sure what the benefit is of perpetually describing and defining disability, unless it is to avoid/delay describing and defining the many faults in the disability support system.
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And another case of a person with autism being committed under the Mental health Act...this time, its a fourteen year old.
Karen Lende was left shocked, frustrated and angry when her son Jai Ferris, 14, was taken from the special needs unit at Spotswood College to Taranaki Base Hospital under the Mental Health Act.
When he came home three weeks later Jai didn't want to leave the house.
She didn't want him to be admitted but didn't have any say in the matter, she said.
Lende said a mental health worker had sent Jai to the hospital, but Taranaki DHB child psychiatrist Yariv Doran said he didn't know who had invoked the act.
But by the time a patient gets to the hospital they have been assessed by at least four people, Doran said.
"If anyone along the way thinks it's not justifiable it will stop, so if any client reaches our doorstep it means he or she has been seen by a few people before us and they are of the same agreement - this person needs to be assessed."
It had to be a massive crisis for the Mental Health Act to be invoked and an independent auditor assessed all patients admitted under the act on a daily basis, he said.
So, a child is committed and the child psychiatrist does not know who the individual was who invoked the Act.
This is extremely troubling, especially when Jai's Mum had been told how important it was to ...
... start a paper trail that might help her get some assistance,
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Hard News: Media Take: We need to talk…, in reply to Shane Le Brun,
She cant seriously think said family would be a functional unit with no issues if all the Cannabis magically dissapeared?
My other half and I were listening to your story on the radio the other day as I was putting him to bed, and wondering how best to source a balm to perhaps alleviate the 'pain' he has from a growth on his lower spine. I say 'pain' as he has a C5 spinal injury of some 46 years sitting and feels no pain as such...it manifests itself as wheelchair ejecting spasm and occasionally the dreaded Autonomic Dysreflexia .
I also watched Media Take the other night and was cheering Marama on. I knew her statements would go down like a cup of cold sick with the decriminalize cannabis group and respect to her for standing her ground. Give her her due...she did say she has had a rethink about cannabis decriminalization....the least she can expect is an acknowledgement that perhaps yes...drug and alcohol abuse are exacerbating factors in some, if not most, of those families' dysfunction.
Perhaps a better way of putting it would be to look at those who come from such dysfunction and have not gone down such a path themselves. Bet my bottom dollar (don't get your hopes up there aren't many $$$ left!), if you asked these functional families the point of difference they will have eschewed the dope. Or the booze. It is easier to avoid going down the same chaotic path to family failure one's ancestors took if one's head is clear enough to recognise and avoid the hazards.
There is a middle ground here, and Marama stepped onto it...it is a bit rude, quite frankly, for her gesture to be scorned.
Now...what's the best way to get our mitts on some magic balm, because on a bad night it like trying to sleep through an earthquake....?
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Fighting exclusion with collective activism...
Tiaho Trust's Jonny Wilkinson speaks out about the lack of accessible housing and inaccessible and mana destroying disability conference venues.
He also has a little bit to say about effective protesting...
It seems to me that, at the moment, to get any media attention at all, you have to generate a disquiet, a disruption, something inappropriate.
Speaking of which, there was a small anti-war protest at one of the Anzac parades on Tuesday. This attracted a fair bit of media attention on the AM Show.
There was a clip of a young boy who vented his disapproval at the protesters. He harangued the protesters in a rather stentorious manner, saying: "It's totally inappropriate to protest on this day, it's just wrong, wrong, wrong!"
So here's the thing about protesting, folks, it's MEANT TO BE INAPPROPRIATE, THAT'S THE WHOLE POINT OF PROTESTING.
It is designed to be confronting and uncomfortable, in order to spark different ways of looking at things.
Now, getting access to the full range of facilities at an iconic hotel . . . this is not meant to be confronting and uncomfortable.
That, my self-righteous young friend, is truly wrong, wrong, wrong and decidedly "inappropriate".
:-) :-)
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Brian Easton, a more than competent hammer hand...
There is a well-established research finding of ³group polarisation²: when like-minded people get together, and speak and listen only to one another, they usually end up thinking a more extreme version of what they thought before they started to talk.
This was quarter of a century ago, but while we are less ideological today I see a similar pattern. Given a choice between a team player and a competent sceptic the system goes for the former, pretending that team players are the experts and the outsiders cannot be relied upon. Not only do the appointed incompetents bring the average down, but they have not the judgement to identify competence and so the appointments they make lower quality standards further.