Posts by Rosemary McDonald
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Access: Family Carers Case – Five Years On, in reply to Hilary Stace,
Or this wee piece of research I've been sitting on for a while.
"For the non-ACC group, median income declined by 45 per cent over 30 months (from $36,500 to $19,900) while the median income of the ACC group increased from $40,000 to $45,900."
So....by the gods of anarchy...household income INCREASES for spinal injured covered by ACC.
Now, lets have a think why that might be....
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Yayyyy!
Peter and I had a random hook up with an ancillary medical person (in the disability field) at a campsite. This guy had started his apprenticeship the year Peter broke his neck...1970. He had helped make the pen holder Peter still uses today.
We got all nostalgic for the good old days, when hand controls were put in cars in an afternoon with the odd dozen of beer in thanks. When the disabled person and the technician got together and worked out a practical solution for the problem. When form filling was kept to an absolute minimum...if there at all.
When a bunch of guys from Lions or Rotary would rock on up and say, "hey, we'll get the gear together and do the job on the weekend".
Ladies, a plate.
Then they made the bureaucrats the key people and it all went to shit.
And costs more!
Still grrrrrrrr.....
Architects, for a door widening and bathroom renovation????
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Access: Some aspects of New Zealand's…, in reply to Angela Hart,
That work will take months,
Actually, the 'work' won't take months.
The paperwork will.
Rips my undies it does when I read this rubbish...as if its a major widening a doorway (done it myself) or stripping out a bathroom (ditto) and leveling a floor(yep) and replacing drains and pipework (gee, I'm a clever girl) relining walls (piece of piss) and laying lino (ok, if pushed, but the adhesives are really yucky).
This is not the Taj Mahal...its a minor bathroom renovation...made all the more easy if for wheelchair access.
What has happened to this country that we have to make such a big deal of this stuff?
Grrrrrrrr.....
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Another 'must be read out loud' piece.
I'm not sure if this is relevant, but I remember hearing or reading about all of the bureaucratic contortions and power struggles the writers detail. ALL of them.
I think what that tells me (and hopefully the people in Christchurch) is that those of us in the rest of the country did care, do care still. We did take notice, we take notice still.
I look forward to getting my mitts on a copy of the book.
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Speaker: UPDATE: Jimmy's best films of…, in reply to Jimmy Rae Brown,
I haven't watched a movie in ages, Jimmy, for various reasons.
One reason would be total disillusionment with films in general...(and telly)...is there nothing new? Different?
Your enthusiasm for your "best choices " makes me think I should make more of an effort.
My favourites, from years past? "The Abyss."..directors cut...awesomeness incarnate...and
"Smilla's Feeling for Snow".
I am looking forward to watching the Swedish "Millennium" series, because I've just read the books.
Keep it up. -
I'm giving this issue a wee bump here.
Our local giveaway paper has a half page ad for carbendazim spraying from a helicopter.
Your truly not happy. Phoned paper. Fobbed off by adman, told by reporter to write Letter to Editor.
Submitted letter.
Today's issue has offending ad now bumped up to page 2....underneath the Letters.
Editor has indicated he will print.
Will be interesting to see if my "common fungicide causes birth defects and irreversible male infertility" letter will be printed above the "helicopter spraying with fungicide will cure all your facial eczema problems" advertisement.
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A gem, Hilary.
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Access: Funded Family Care from a…, in reply to Sacha,
Has Peter found any organisations good at pushing for what he needs changed?
Well. Peter, being one of those foolish people who did not wait until 1st April (Oh! The Irony!)1974 to accidently sustain a high spinal cord injury, has approached both TASC (The Association for Spinal Concerns) and The NZ Spinal Trust.
Both organisations were formed around the time that ACC Tetraplegics won their battle for fully funded 24/7 care.( Including the right to pay family.)
TASC especially is based around that particular case, with McIssaccs Caregiving Agency sponsering them. As an indication of how disconnected TASC is from the MOH;DSS spinal injured….at the last TASC getogether we attended in Hamilton, the President opened the event with a self congratulatory “didn’t we do well to get ACC to fund 24/7 care” speech. The other non ACC tetraplegic stormed out with much bulldozing of furniture to effect an exit in his wheelchair.
The President did not give a shit then, and a few months later when I raised the another issue of disparity with him he just brushed me aside.
Peter hand-wrote (no small feat for a C4/5) a letter to the President a few weeks ago to ask who within TASC is representing the concerns of MOH funded tetraplegics within the context of the new joint MOH ACC Spinal Cord Impairment Action Plan which names both organisations as being in line for funding to facilitate ‘peer support’.
No reply yet.
There is, of course the no small matter that when these ACC tetraplegics were taking on ACC for 24/7 care it was in their interests to completely ignore their older and less advantaged ‘peers’.
The fact that Peter returned to fulltime work within a year of his accident, and kept that job for the next 30 years does not go down well with a group which struggles to get 20% in fulltime work despite ACC funding workplace supports.
Peter did try to engage with the NZ Spinal Trust, and in 2009 the then-CEO was happy to print a letter we wrote about the disparities and especially the Family Carers Case.
However, when it was clear the the Gummint was going to react negatively to the Appeal Court (for the Fanily Carers Case) decision we again approached NZ Spinal Trust to see if they could be more vocal about this issue. My usual lack of tact got me thrown off their Facebook page..as…get this…’ we can’t allow any criticism of MOH because we rely on their funding us’. Somewhere in the mire of my email archive is an email from the CEO to this effect.
So, in answer to your question Sacha….
Peter and I own most of our home. (if the government had accepted the HRRT decision on 8th January 2010, and Peter was able to (openly) use his IF to pay me as his carer, we would not have had to take out a mortgage in late 2010.) We own our Bus…thanks to Peter having worked and saved hard for 30 odd years…so even if we are out on the street…we have a roof over our heads.
BUT, as walrus says, if anything happens to me….he’s up the proverbial because his relationship with the NASC and MOH;DSS has completely broken down because we have had the audacity to speak out.
They don’t like that one little bit.
Peter would be writing…but spasm prevents him using a computer keyboard.
Peter is happy to hold a sign protesting against providers who ‘neglect to death’ disabled people in their care (that was his idea), as long as people like walrus continue to use words to describe the reality of his precarious existence.
Again walrus, thank you.
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Access: Funded Family Care from a…, in reply to walrus,
As you will be aware, we cripples are expected to be ostentatiously grateful for every pat on the head we are offered, to rock no boats, bite no hands, and to swap sensible English for euphemistic jargon. The daughter in question (that would be me) is concerned about the potential ramifications of being branded trouble-makers. We are in large part dependent on the goodwill of the NASCs and the MoH in order to remain in this new Elysian lifestyle that enables such wonders as having some money in the bank to replace the next household appliance that dies, and being able to afford the petrol to get to my twice-weekly leisure activity of choice.
Beyond that, there is the more distant future. One day, assuming I don’t pop off first, Mum will become temporarily or permanently unable to provide my care. I need a certain level of care by very capable people in order, frankly, to remain alive.
Thank you walrus.
Thought it would be something along those lines.
Peter wishes to thank you for putting so eloquently just how he feels.Now...are others going to read, and actually grasp the magnitude of what you so accurately describe?
"Those same NASC and MoH people who have the power to revoke our FFC arrangement also have the power to reduce my funded care to a dangerously low level and to institutionalise. If I’m on record as being high-needs with a “difficult” family, might that not affect decision-making? I don’t want to take the risk. I can’t afford to take the risk."
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"ffc withheldffc"....why are you not posting under your real name?
Just asking.