Posts by Rosemary McDonald
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FWIW....Our Leader cares not one jot for New Zealand or our people.
We are all pawns in this rich, privileged, grinning fool's game.The Jolly German Giant cares not one jot for his 'adopted' country. We are all pawns in this rich, privileged, grinning fool's game.
Any hope that we, as a nation, had of being free of the tyranny of the current government was lost when previously principled people fell victim to the charms of the latter.
And just when I was giving serious consideration to participating in the democratic process.......
Oh, well.
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For some very informative discussion on solar power and the changes in the technology over the past few years, visit
http://www.nzmotorhome.co.nz/NZMotorhomeForum/viewforum.php?f=55
and search "Solar"....and stand back!!!Some of these guys are totally commited to solar power, but acknowledge the potential pitfalls of poor installation and management. There is some discussion on domestic solar power, and on the viability of the 'sell back power to the grid' schemes.
On solar water heating.
Forty years ago the Eastern Bay of Plenty Electric Power Board offerred intrest free loans on solar hw systems.
We got one installed, a flat panel system, worked a treat.Seriously.
Combined with a wetback system on the fire during the winter....
Had the whole Family Carers issue had not gone so tits up for us, we would have installed solar hot water in a heartbeat.
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I'm reviving this post because I'm not sure where else to put this latest effort from the Ministry of Health to improve the lives of disabled people.
http://www.stuff.co.nz/national/health/10261601/Drugs-tested-on-mentally-disabledI really think this needs some discussion.
Perhaps some reaction?
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Chelle,
I have read and re-read your post to try and extract a line or paragraph that stands out.
Impossible.
Everything you say is right on the mark.
Spina bifida carries with it multiple issues, which left unattended can lead to serious debillity on top of the disability.
For all these issues, regular exercise will be of enormous benefit.
Without causing emabarrasment (I was removed from another disability forum for discussing the 'yucky' issues faced by most with spinal cord impairment) you will find that body systems that have previously been less than cooperative will function (after a fashion) much more efficiently.
This will make you feel physically better, and cheer you up no end.
As the partner and fulltime carer of a tetraplegic, I speak with some authority on this. Lack of physical exertion for any amount of time can be fatal. Peter has always been a fit fellow, and needs little prompting to 'go for a push' to get some much needed excercise...especially after two or three rainy Bus- bound days! My job is to find a suitable environment, so he can waltz off by himself without needing extra help with curbs and the like. At home....no problem. When away in the Bus...we find that supermarkets and big hardware shops provide excellent wheelchair racetracks.
FYI, Kaitaia's main shopping street is the best outdoor wheelchair pushing surface of any town in NZ....no camber on the footpaths.
Peter is a C4/5, and if he broke his neck today, he would probably never have used a manual chair.
As it was, he HAD to learn to push a chair and HAD to learn balance and coordination.
His shoulders are knackered and he now uses e-motion wheels....oh boy, what an effort to get MOH funding for those!
We see people in powered chairs who need to do little to effect motion. All good for 'independant mobility' but absolute crap for maintaining fitness. Even if a manual chair is also supplied....how many actually give up the power chair to get some excercise?
Inertia is probably the biggest problem to overcome.
Overcoming inertia is hard when its cold and wet and the skies are dismal grey.
Just getting your butt to the gym would take serious commitment in the middle of winter.
On the Vit D thing...Peter will go and park with his clothed back to the sun (when its out!) for ten minutes or so for his daily dose. Also warms his muscles and his old bones.
He also spends a considerable amount of time out doors when its not raining, so even on a dull day he is getting a dose.
All the best Chelle....
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Access: Paying Family Carers - What was…, in reply to Christine Peet,
Good on you for standing up to the ignorant so and so!
Peter too worked fulltime for over 30 years after breaking his neck, as did many of the pre - ACC tetraplegics.
I vividly remeber a visit to Burwood Spinal Unit in our Bus some years ago. A fairly newly injured guy wheeled over and with all seriousness asked if ACC had paid for our Bus.
When Peter replied, "No, I worked fulltime and saved up...", the guy got the pip and stalked off!
Two completely different cultures in the NZ disabled community.
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Thanks for that Christine, and you've summed it up quite nicely. In order to give the level of support a family member needs, paid employment outside the home becomes un- doable in many cases.
Spouses and partners unable to work because of caring commitments do not qualify for for the DPB Care of Sick and Infirm. (Lovely language!) That was the pre- reform benefit. We qualify for the SLP...which is tied to the disabled partners benefit....and both benefits are affected by earnings of the other partner.
We were told by a WINZ employee some years ago that partners and spouses of disabled were being discriminated against by not qualifying for the DPB CSI....which provided a significantly higher income than what we get. He and his collegues could think of no valid reason why this policy was in place....he encouraged us to take THAT issue to the Human Rights Commission.
Having said that....we were told by an employee from the Auckland Spinal Unit that under IF, partners and spouses CAN be paid as carers.
Funny that since the 'rules' state otherwise.
However, it is common knowledge that paying partners and spouses through IF or through a provider is/was almost routine.
Trouble is/was, it required a certain level of deceit that some of us were not prepared to involve ourselves in.
I say is/was because these árrangements are supposed to have been terminated by now.
Oh, what a tangled web we weave!
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Hard News: Hope and Wire, in reply to Hebe,
in Gerry’s Ilam, where the residents object to us parking for five minutes in the street to pick up our kids – who otherwise spend 80 minutes on a bus trip that should take 35 minutes).
Un- fucking- believable.
Well, no, not really. Pretty much what you'd expect from his ilk.
We were on our way to Wellington to a 'protest' meeting at the Beehive last year (about a completely different issue). It was a rainy Saturday afternoon and our Bus decided to play up....we were in a small town in the King Country.
We found a young mechanic, still working at that hour who not only fixed our Bus for free but took a genuine interest in our mission.Guess what he asked us to do?
Guess what to him was the biggest failure the Government was involved with at the time?
Christchurch.
"If you see that Brownlee fella" he said, "tell him to sort those poor people out".
Pretty simple really.
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Access: Paying Family Carers - What was…, in reply to Sacha,
That’s a great submission – did you help them?
Right off the mark,Hahaha!
No, but reading this, and the few other submissions that were available on the net at the time certainly provided this family carer with much needed bouyancy at a time when I was feeling isolated and alone and drowning in self pity. Shame on me.
This particular submitter got it.
You have highlighted the key phrases Sacha.
This was much needed validation and vindication for those of us who do provide a high level of care for our loved ones, at a time when the 'establishment' was expressing concern at the Appeal Court decison and making comments such as this:
http://tvnz.co.nz/national-news/disabled-carer-decision-mixed-bag-video-4889104
Stupid me already knew, from direct feedback from medical professionals in hospitals, that in general the medical fraternity already held the care from family in very high regard....having had to deal with the negative impacts of provider care.
However, such was impact of the nasty and downright malicious statements made during the three Atkinson hearings against family carers...I admit to having lost a little perspective.
However....
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Access: Paying Family Carers - What was…, in reply to Sacha,
NZMA Submission Paying Family Carers.pdf
Only when people with disabilities know that their lives are valued will they be able have trust in non family care.
To be fair, that goes for family-provided support as well.
And we must, of course, be fair.
What would 'being fair' look like when comparing family and non-family care?
When it comes to paid care, I'll leave it to those professionals who see the best, and worst, of both. See attached NZMA Submission Paying Family Carers.pdf
And since I will never be a Funded Family Carer, subject to all the conditions and constraints of the scheme, I'll leave it to those who are to explain how "fair" their treatment is compared with the non family paid carers.
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Access: Paying Family Carers - What was…, in reply to Christine Peet,
read the comments and can relate to much of it!
I had a feeling you might!
So often we can feel that we are alone in our experiences, alone in our fears, alone in our troubles.
Not so.
In response to yor post to Angela (if I can butt in!)
"Agencies are the more secure way to go for me. If a caregiver wants to have a holiday or is sick then at least there is cover."
Peter was asked why he didn't take the offer of IF, with the condition that he did not pay me. His reply was basically the same.
His cares needs are such that extensive training would be needed for any staff he hired....and much of this training would need to be done by me. If those staff could not handle certain issues, or failed to show, or had to leave early.....yep, down to me again. An agency who has signed a contract to provide care is obliged to at least send someone to a client.
Even when ill health mean't that we needed help from an agency....we could not find any here in the Waikato willing to sign a contract to provide Peter with carers.