Posts by Rosemary McDonald
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Hard News: The next four years, in reply to Simon Grigg,
The National Endowment for the Humanities, founded in 1965, is a leading source of funding for humanities programs in the United States. Its grants support cultural institutions including museums, libraries, and public television, as well as universities and individual scholarship. It has supported over 7,000 book projects, including 16 Pulitzer Prize winners, and the United States Newspaper Project, cataloguing over 60 million pages of historic newspapers for future use by scholars.
This was the topic of the family's dinner tonight. Not only our universal dependency on the web archive, but also the incredible importance of preserving pre-web material.
The example of researchers using archived newspapers...national, state and county publications...from the past 150 plus years to validate historical claims when the current 'official' accounts differ widely from traditional oral histories.
History can truly be re-written, and unless these archives are preserved and cherished the truth will be written off as fanciful fiction. -
Hard News: The next four years, in reply to Russell Brown,
This is a war on knowledge. It’s evil.
This scares me.
We have become so dependent on the ability to validate our assertions with an appropriate 'link' to an official (read 'government') document. Especially when we are having to engage with a government agency.
We will be told "we have no record of that so it didn't happen, wasn't said, nobody ever recorded that..."
Like it never happened.
And it'll come down to their word against ours. (Peter and I have been locked in such combat for the past year...hopefully a post for Access soon.)
Battle lines drawn.
And on a mass scale like this....prelude to what...civil war?
Considering most if not all of these resources were compiled using taxpayer funding...surely this amounts to theft from the State by the current administration.
Now I'm seriously rattled...this is 'mess with their heads' stuff.
Thanks Russell for posting this. I think.
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Up Front: Walk This Way, in reply to Karen Hester,
I know it might sound a little cutesy, but it has been a fun experience.
Thanks Karen. I don't, no can't knit (to save myself) but I might make one out of polar fleece...maybe with sewn in ears. (Although, at first glance the knitted hats appear to have stylized uterine horns.)
Hope the march stays all about community.... kia kaha, and be safe.
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Hard News: Is the Ministry of Health…, in reply to Blair Anderson,
and surely it is agreed, ‘a health issue’ then why is policy inconsistent with our disability law. ie: “no decision about us, without us”.
Whoa there, mate!
The Misery of Health Disability Support Services does do the whole 'nothing about us without us' thing, waves around the NZ Disability Strategy and perhaps even the United Nations Convention on the Rights of People with Disability and it does have a Consumer Consortium so the actual consumer is 'consulted'.
It helps enormously if the members of the Consumer Consortium are all from DPOs which are dependant on Miserly of Health funding to stay operational.
The payer of the piper always calls the tune.
But....there is no law that says they have to listen, nor even pretend to tailor services according to the expressed requirements....because they can stand on their fallback postion of telling us that there is no actual entitlement to any services, at all.
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Up Front: Walk This Way, in reply to mark taslov,
or any transmisogynist for that matter, drawing the trans person back into that conversation doesn’t magically validate it.
This was posted on The Standard the other day and held me engrossed for over an hour...reading the text, following the links and reading the comments.
I've been mulling it over ever since...and seeing parallels in other 'groups' who aim for inclusion but end up diversifying...if that's the right word. A whole bunch of disparate individuals who for safety, maybe, join up and the assumption is made that they're all essentially on the same page. When they are not. And misunderstanding and bitterness ensues until the component parts begin to split...
And the oppressed inadvertently become the oppressors.
It was like being at a 70s consciousness raising session.
We'd be marching in Auckland if the march began at Myers Park and went down to the US Consulate. I am too old and unfit to push the wheelchair up the hill.
(And could someone explain to me the significance of the pink pussyhats...I'm scared to ask Mr.Google)
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Access: Help needed! Deciphering the…, in reply to Kumara Republic,
Were mental institutions really abolished years ago?
You made me have to go and lookitup....
yes, the big institutions were 'abolished'....but the need for some containment/secure facilities was recognised and these became known as "forensic units'. They love to think that by changing the terminology they change the thinking don't they?
And bless the Mystery of Health...they produced a ...document in 2007 to tell us all about them.
It is 66 pages long...
More recently, and more pertaining to the cases currently being spoken about...I stumbled over this RIS from 2012 which is trying to solve the problem of High Risk Offenders having to be released at the end of their sentence....involves both Corrections and the Miserly of Health.
They just love to show their working.
I don't know...we really have done a crap job of supporting those with intellectual impairments, autism and co-diagnoses. Where are the experts in these fields and what are their recommendations? I see a plethora of policy analyses, data dumps, situation analyses and the like...but I'm struggling to find any solid sounding stuff from experts saying..." this is the sort of care we suggest for those with these issues who's families' are unable to cope but for whom incarceration would be a breach of their rights and probably exacerbate their mental instability."
I know there is no silver bullet, one size fits all solution...but we sure as hell must do better than this.
Is it a reluctance to fund the 'untreatable' (as that treasury doc implies), or is it a failure to see that as the increasing number of youngsters identified as being on the spectrum reach adolescence( the age where frequently family carers struggle) more funding for specialist care is needed.
Maybe we should spend more time looking at the 'similar to Ashley' stories.
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Access: Help needed! Deciphering the…, in reply to Rosemary McDonald,
There has been no introduction to a potential Contingency Plan Service Provider…as was our very definitely stated goal for this assessment, just a statement from the NASC manager that he would provide us with a list of Providers so, I suppose, we can sort our own shit out should I become suddenly incapacitated.
We are not the only ones having to deal with this. There are eight of us in our little 'circle'.
I have spoke with the other three families we know who are in a similar situation.
A person with a significant impairment, assessed Very High Support Needs Level, being cared for a close family member.
Two are being cared for by a parent under Funded Family Care and two by an unpaid partner.
All of us living with the knowledge that in the event of the family carer being incapacitated (or worse), the person they care for and about is going to be up the proverbial because the system is unable to find and/or fund for the required level of care through a MOH contracted provider.
Well, we fired off a few emails this last week to try and find a provider willing and able to help us with a Contingency Plan. Our biggest issue is that the MOH providers do not usually have staff who are experienced with tetraplegia. ACC has providers who are...in fact at least one agency was set up to specifically manage the care for high tetraplegics...but they don't do contracts with the Miserly of Health.
However!!!
It appears that this is now an actual thing.
An an ACC Contracted Provider has agreed (with surprising enthusiasm) to put a Contingency Plan on the shelf, at no charge, in the event that the 'Rosemary drops down dead scenario' takes place.
This provider has a number of different departments, some of which have contracts with the Misery of Health, and so have developed a 'bridge' so that clients such as Peter can access the expertise of the ACC funded pool of carers and the funding goes through one of the other departments with the MOH funding mechanisms in place.
It sounds a tad complicated, but I do know that at least two of the other families in our circle have approached the same provider in the past couple of years with the same purpose in mind...and got either nowhere(because of the funding mechanism issue) or got a vague 'we'll think about it'.
I am going to allow myself a tentative whew!
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Well, here we go again.
Autistic teen put in police cell as agencies refuse care
An autistic 14-year-old boy has had to spend a night in police cells this week and has been in and out of court with no agencies willing to take him into their care.
He will spend the weekend in an unstaffed, IHC-provided house with only one bed and no fridge and his father will provide care because the family has no other support.
The boy was arrested and taken into police custody earlier this week following a domestic incident.
He appeared in court several times in just a few days as judges, agencies and lawyers wrangled over where he should stay.
The boy's mother spoke to RNZ and said she and her husband were exhausted after trying desperately to find a solution for their son.
"This shouldn't happen and we've been asking for help for so long.
"Even through a court nothing can happen, and these services, he doesn't fit [their] criteria."
She was frustrated at the lack of help.
"It's just too common with these kids and there's gotta be someone out there.
"No one's qualified I keep getting told, but, I mean we're not either."
She said her son was stood down by his school last year, and subsequently spent time at the Rangatahi (youth) mental health unit in Porirua that now says it does not want him.
An advocate helping the family, Wendy Duff, said it had been a stressful and tumultuous week for the boy.
"He has been moved over the last three days, which is something that is so appalling.
"He should not have been in a police cell, he's then been in a CYFs home with guards standing either side of him.
"He's now been taken out to a strange environment to be left with his father because it's the only person who can care for him over the weekend."
Mrs Duff, who is a board member with Autism New Zealand, said the boy needed round-the-clock professional care.
A residence was being sought, but it should not have taken this long, Mrs Duff said.
"He's been in court I think a number of four times.
"He'll be back in court again Monday morning, it's unknown where he goes to from there.
"I believe there's a panic on to try and get a provider to set up a residential house for him, but they have this problem of trying to find staff."
There were many families throughout New Zealand in a similar situation, and there was a lack of support services for them, she said.
"We have a huge shortage of any type of residential housing for these young people when they go into crises.
"It's happening around the country and there's families just bubbling away at the moment where they're going to come to a tipping point where the same thing's going to happen.
Mrs Duff said many young autistic people were being rejected by mental health units because they often ended up staying there with nowhere else to go, as there were no other suitable options.
In a statement the Ministry of Health said it had been doing its best to help the family.
"The Ministry has been working with other agencies to find an urgent solution and will continue to do so until a long term solution can be found," it said.
"The family's advocate has been in touch with the Ministry and we have responded to her concerns."
Sorry for the big copy and paste...but Natrad did an excellent reporting job on this.
And also, Lawyer Tony Ellis gets a mention in this Stuff article written by the more than competent John Weeks....who also penned this update on the case that Ellis took to the courts last year.
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Hard News: Paths and ways, in reply to Peter Darlington,
isn’t quite getting it right…
Hmmm...we had a bike v. wheelchair incident on the Kulim to Fergusson Parks section of this shared 'walkway' in Tauranga a couple of years ago.
The concrete path would have been no wider than that one in Nelson shown in the photo...the poor biker almost ended up in the tide.
He was going way too fast...and looked quite aggrieved that he had to give way to the wheelchair.
Share with care?
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Hard News: Paths and ways, in reply to Moz,