Posts by Rosemary McDonald

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  • Hard News: Hep C: When doctors do the…, in reply to Sacha,

    you can’t complain to the Health and Disability Commissioner about rudeness, but people shouldn’t come away from their doctor crying and hurt.

    see Right 1 of the HDC Code: “Respect”.
    Please do complain.

    My understanding is that one can complain to the H&D Commission about services rendered but not services denied.

    Remember...eligibility for government funded health and disability services does not confer entitlement.

    Being eligible gives a person a right to be considered for publicly funded health or disability services (ie, free or subsidised). It is not an entitlement to receive any particular service. Individuals need to meet certain clinical and other assessment criteria to receive many services.

    Methinks Hazel may be farting into a strong wind with a complaint...the bastards have shit like this all sewn up.

    Sincerely hope I'm wrong.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Murder – it’s not OK., in reply to ,

    I totally get what you are pointing out. That killing a disabled person is no less acceptable than killing an infant, because they require there caregivers time and energy.

    But it’s also important to consider the mitigating factors in the mental health of the murderer in all sentences. Like when someone kills a three year old, rather than giving oxygen to opinion people who write angry blogs about public lynchings, it might be better to look at the mitigating factors during the sentencing process, ( which you are doing ) then create sentences that help society to heal holistically.

    Thank you Steven for putting this into words.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Murder – it’s not OK., in reply to Hilary Stace,

    Ministry of Health sees no responsibility to improve services!

    Absolutely typical, and as Sacha says...disgusting.

    Ministry disability support services group manager Toni Atkinson said there were many autistic people who did not need disability support.

    There was no need to improve training for carers, and autism support was not under-resourced, she said.

    "The ministry funds an organisation, Te Pou, to provide disability and workforce training. Other support is available based on people's disability-related needs which varies for each individual."

    We should take a look at TePou...meet their grinning team here.

    Atkinson goes on...

    Atkinson did not know how many respite carers worked in Marlborough, she said.

    She would not comment directly on the amount of support Donella Knox received, but said the ministry was always working to improve how it supported disabled people.

    "The ministry has recently invested in a new carer matching/carer learning service. This gives people across the country access to an online database of carers."

    Well...the bit about the ministry working to improve how it supports disabled people is total bullshit for a start...and when I read that yesterday (here at the Kaitaia Library using their Aotearoa Peoples Network) I felt physically ill. I was going to comment here yesterday, but had to delete what I had wrote....

    So far I have not had the pleasure of meeting Toni Atkinson, although I have spoken with her on the phone. She lied on that occasion too.

    Back in the good old days the Misery used to host Consumer Forums in major centres around the rohe. These were a perfect opportunity for those living with disability to take their most pressing issues to those at the top in DSS. These were not celebratory occasions, and once the preliminaries of showing how much was spent on what by DSS were over attendees were free to give voice to their concerns.

    There was anger, and there were tears of frustration and despair.

    The last one we attended was in Dunedin in 2013...and was fronted by Barbara Crawford. Barbara Crawford was most put out when our table's biggest issue was the lack of sufficient supplies to manage the bowel and bladder dysunction issues common to those with spinal impairment. Tried to explain that having to use a sterile, prepackaged catheter labeled "SINGLE USE ONLY" a dozen times because only 10 are supplied per month was false economy in terms of resultant bladder and kidney infections...went down like a cup of cold sick it did...talking about specific (and obviously 'icky') disability issues.

    Anyway...it seems there are no more Consumer Forums...just the Consumer Consortiums.

    Which are clearly doing a less than awesome job in conveying to the Misery just how shit their service is. I guess if you are representing an advocacy group which relies on the Miserly for funding your ability to do actual advocacy is limited. Such is the system...and they call this consultation.

    And then we have the very grand sounding Disability Sector Strategic Reference Group whose function it seems is to provide...

    ....an inclusive forum where key stakeholders can discuss strategic disability issues and identify opportunities for improvement, with the aim of informing the Ministry’s strategic direction for, and purchasing of, disability support services.

    The minutes of their last meeting are here, if reading the same old drivel floats your boat...

    If the the Ministry of Health has this site monitored... please take note...

    The Ministry of Health Disability Support Services is a blight on the lives of disabled New Zealanders. You seem to think you are doing a good job.

    You're not. You are doing an absolutely appallingly bad job. You could not have done a worse job if you'd tried.

    Big fail.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…, in reply to Sacha,

    I wonder if anybody compared service responsiveness from the old Department of Social Welfare to the Misery after Richardson and co made the switcheroo?

    Very good question...which I'll try to respond to in a more coherent fashion than my last comment.

    Briefly...Peter broke neck in 1970. Spent until about 1985 in CCS homes as his care needs were so high. He worked fultime in a mainstream job throughout this time. Peter purchased his own home in about 1985....but because he was working fulltime he did not qualify for any funding for his care. So, he offered board in exchange for care. Was not a happy time. Eventually he spat the dummy and demanded to be admitted to the Public Hospital. PH refused...not their problem because he wasn't sick. SW held their ground saying no funding for home based care for working disabled. Hospital relented and sent orderlies to get Peter up and District Nurses to do the nursier cares. They told him to hang in there as the Attendant Care Scheme was on it's way which would fund care without means and asset testing. Peter was one of the first to be signed up.

    So in 1986 Peter got 35 hours per week of care through an agency operating from the Disability Resource Centre with funding from DSW. Carers were of variable capability...but if one didn't work out, another would be sent. Peter did most of the training himself. I think by 1995/6 the funding was coming from the DHB...

    So....from being in dire circumstances in 1985...things were well on their way towards some degree of security for Peter with regards to his home based care needs. We got together in 1999, I began doing all his cares, and we assumed if that didn't work out all he would need to do was make a phone call and 'formal' carers would be sent.

    In late 2002 I got sick, phoned around all the providers in the Waikato with contracts with the Ministry of Health (who were now the funders, through DSS) and bugger me if none were willing or able to provide home based care for a C5 tetraplegic....particular required care procedures could only be done by registered nurses. The NASC said he'd have to go into residential care if I couldn't do the job.

    So...from dire to getting good to dire again....the Misery took over sometime between April 1999 and October 2002 and completely stuffed up what was becoming a workable system for providing home based care for people with high care needs.

    A note about the NASC. After us telling them in 2002 that residential care was not an option they had Peter re-assessed. A few days later we received notification that 110 days of Carer Support had been allocated. I phoned the NASC and asked how this solved our immediate problem of needing home based care for Peter while I dealt to my health needs. I was told to be 'creative'....in other words...sort your own shit out.

    Peter obtained a copy of his NASC file in December 2015....there is no mention made that we asked for 'formal' home based care and that this was not available...in fact...the record states that we didn't want outside carers. This is the complete opposite of what actually happened.

    We're not sure whether the NASC staff are just incompetent or there was/is some directive from their Paymasters not to let a client's record reflect the inadequacies or total unavailability of funded supports for those with high needs.

    I don't think this answers your question...but I can state categorically that for Peter the Ministry of Health was the worst thing that could have happened in terms of security of home based care.

    They cocked up big time....and the bastards will never admit it.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…, in reply to Sacha,

    How our 1990s funder/provider ‘market’ approach does not work for disability support services is touched on in this story about Donella Knox’s murder of her autistic daughter Ruby:

    Butcher said that even though Knox was allocated respite care she couldn’t take it as there were no qualified carers in her region.

    Allocating a number of hours does not make a suitable provider magically
    appear, except in libertarian fantasies.

    Yes. Allocating a number of hours does not make a suitable provider magically
    appear.

    We've waved the wand on two occasions...not ever likely to try again.

    I'm thinking that the SPCA would do a better job of providing disability supports than the Misery of Health.

    Christ almighty they're useless.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…,

    The quick-witted will have remembered that the Guideline (the focus of this post) states quite clearly that....

    In the main, the overriding principal should be that if a person chooses to remain in their own home then the support package will be based on their assessed need and the funding package would attract the like residential service when living with at least two others.

    So...Hohepa Trust is funded $160,000 per client per year for residential care, and the Miserly has set the limit for for funding (before an extreme executive level review kicks in) an individual wanting to live in their own home at $80,000.

    And the bastards argue that residential care is more 'cost effective'.

    They must think we're stupid.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…,

    Greg O'Connor, fearless defender of the honour of the NZ Police, was on Natrad this morning discussing his political aspirations with the Labour Party. Peter was listening and told me O'Connor told Espiner that he had an interest in disability. "Go lookitup", Peter said.

    According to Linkedin O'Connor is on the Board of the Hohepa Homes Trust...

    responsible for the distribution of $40 million dollars funding to five intellectually disabled residential communities with in excess of 250 high needs residents.

    Now my rudimentary maths tells me that $40,000000 divided by 250 equals a spend of $160,000 per person per year.

    So maybe Greg might be the one to approach to extend that level of allocation of funding per person to those with very high needs who wish to live in their own homes.

    $160,000 would buy about 113 hours per week of home based care.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…, in reply to Sacha,

    That sounds awfully familiar already.

    It's the here and now.

    This is hanging over our heads, all day and every day. Just thinking about what Peter's future could be if/when I wear out produces symptoms of what I now realise is a panic attack.

    I am supposed to be writing a lengthy post about our experience over the years with our NASC.... but I am struggling because I end up sounding like a whiny stuck record.

    When Peter and I got together in 1999 and I became his sole, full time unpaid carer we assumed that if it didn't work out he could just pick up the phone and 'professional' carers would be sent. There were a couple of agencies in Hamilton who provided care for those with high needs.

    When this was tested in October 2002, there were no providers who could 'do' tetraplegics. The NASC stated that 'he'll have to go into residential care."

    The last time that was said by the NASC was 2012 when I was asked if I wanted Peter to go into residential care.

    In the Atkinson HRRT hearing, the Miserly of Health kept banging on about 'alternatives' to care from family...persisted in the narrative that there were alternatives. What they didn't get, and still don't, is that the 'alternative' of residential care is no alternative at all since not many would choose residential care after being cared for in their own home.

    Peter got a copy of his NASC file just over a year ago.

    What is written in the file does not reflect the reality. I go as far as to use the 'L' word.

    Nowhere does it mention that the only alternative to me providing all of Peter's care was residential care...even though they stated that. Nowhere.

    Without polishing up my tinfoil hat...we will never, ever hold any conversation with our NASC unless it is recorded, and there is at least one other witness.

    Which would be the primary message should I ever get around to writing the saga...

    ...never 'chat' to the NASC about anything important without recording the conversation and preferably, conduct all conversations via email.

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Access: Help needed! Deciphering the…,

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

  • Hard News: The next four years,

    This is waay too good to be anything other than ‘fake’….badlands-national-park-defies-donald-trumps-orders-then-eerily-deletes-its-climate-change-facts

    With the Trump administration placing a gag order on the Environmental Protection Agency, shutting down its Twitter feed, forcing employees off their individual accounts and dismantling Web pages with climate-change information, Badlands went rogue.

    “Today, the amount of carbon dioxide in the atmosphere is higher than at any time in the last 650,000 years,” it declared in one of at least four tweets.

    “Today, the amount of carbon dioxide in the atmosphere is higher than at any time in the last 650,000 years,” it declared in one of at least four tweets.

    Admirers went nuts. They created a hashtag, #Badasslands, in an ode to the defiance and dubbed the park Breaking Badlands after the TV show "Breaking Bad."

    Another tune, methinks, to soothe…

    You couldn’t make this shit up….

    Waikato, or on the road • Since Apr 2014 • 1346 posts Report

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