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Access: Help needed! Deciphering the Plan for High Cost Community Care

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  • WaterDragon,

    Mean spirited gits!

    Behind you • Since Jul 2011 • 79 posts Report Reply

  • Angela Hart,

    Thanks for this post Rosemary.

    Looking at the document, what comes across to me is that the Ministry of Health's overriding number one priority is keeping cost under control. Not, as you might expect, supporting health.

    It says that the risks a disabled person may encounter by continuing to live in their own home are the disabled person's choice- but it says nothing about the risks of "choosing" residential care.

    The number of very high needs Ministry of Health clients is not great, but for those that I know, residential care would be a death sentence, most likely for the body, but if that should happen to survive for any length of time, then very rapidly for the wairua.

    If there was a respectful, honest and sincere effort on the part of the Ministry to cater for people with disabilities, including those with high and very high needs, surely the risks of all types of support would be taken into account. I'm not seeing that with these guidelines, just a very strong incentive for NASCs to keep support packages below 80K regardless of the safety, needs or desires of the disabled person.

    I'd like to know just exactly what qualifies a person with a disability to be permitted to live alone in the Ministry's eyes. And I can't help but compare with ACC's management of people with high spinal chord injuries, who have access to the supports they need and who live lives of their own choosing. Several of our friends who are entitled - yes entitled, not just eligible - to 24/7 support through ACC choose not to use it because they can manage and feel more in control of their daily lives with a lesser amount of carefully targetted support.

    If the Ministry of Health's priority was health rather than cost and it engaged sensibly with high needs disabled people and their families it would find that a more open and flexible approach yields far better results and often for lower cost. Most of us are not out for everything we can get, we just want and need safe, secure and empathetic support for our loved ones.

    The trouble is our experiences have taught us not to trust the Ministry or its agents, the NASCs, and they choose not to trust us. (See Sunday for how the MoH has ripped off Cliff Robinson- again- https://www.tvnz.co.nz/ondemand/sunday/27-11-2016/series-2016-episode-42 )

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    If there was a respectful, honest and sincere effort on the part of the Ministry to cater for people with disabilities,

    If the Ministry of Health’s priority was health rather than cost and it engaged sensibly...

    See...right there...!

    I don't know whether it is malice, or they simply have shit for brains.

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

  • Angela Hart, in reply to Rosemary McDonald,

    I don’t know whether it is malice, or they simply have shit for brains.

    the impact is the same

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha,

    the need to manage within fiscal constraints prevails

    Interesting, thanks. It really is more of the same miserable attitude that containing government costs is a morally superior priority to honouring a citizen's human rights and legally-confirmed expectations of service.

    TV3's The Nation also ran a thorough story this weekend about the ongoing skullduggery of the Ministry and Ministers over family care funding.

    Watching, I'd forgotten how obnoxious Tony Ryall was when he delivered that same line. Nothing has changed in many years. The Ministry still believes in its core that 'cost-effective' trumps all else. Have had their legal team make the argument it supercedes the common duty of care, even.

    That sick culture will not change until great force is applied. Probably requires a change of govt and a Minister who will ruthlessly squeeze it out of them over several years. The current clown Lotu-Iiga interviewed at the end of the Nation story is an abject embarrassment, as usual.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald,

    I'm really keen to get others' interpretation of these two passages....(I am incapable of seeing them other than through the lens of suspicion.)

    Service coordinations need to be based on ESSENTIAL NEEDS only.

    • MOH does not fund lifestyle choice (ie where natural support would otherwise fill the need) - for example when the family refuse other government funded supports (ie
    rehab/respite or MSD funded day services).

    NASC must use the ICARe process to determine the need for direct physical support (hands on support needs) at all times ensuring that natural supports (not considering lifestyle choices such as full time work) are included in the support plan. Funding will be based on assessed support hours and will be based on core staff costs.

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

  • Rosemary McDonald, in reply to Sacha,

    Tony Ryall tells family carers where to go....pdf

    I’d forgotten how obnoxious Tony Ryall was

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

  • Rosemary McDonald,

    For a bit of historical context....this is a speech by Ruth Dyson from 2001.

    I particularly liked the description in the conference programme of the NASC workshop – “unlocking the mysteries of the Needs Assessment”. Perhaps when you’ve done that, you could give me the key as well!

    I must say that a review of NASC is my top priority. I’m getting very inconsistent messages about NASC around the country, including the message that for many, NASC is the main obstacle to people receiving good services rather than the entry point.

    The original concept of NASC was good – putting the person with the disability at the centre of the equation, assessing their needs (as defined by themselves and their family) on an individual basis, and actively securing the best possible package of services to meet those needs.

    In practice, however, the concept is becoming increasingly unworkable. The process is inconsisent, and is being used as a budget manager. As NASC provider Lorna Sullivan described it recently, it has become "a gateway to limited resources", where needs "are defined from within a very limited range of possibilities identified on a standardised assessment tool".

    Every time I read this...I just want to sit and weep at how far we have come....

    The Misery of Health seems determined to lock disabled New Zealanders in sort of a time loop....SSDD.

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

  • Angela Hart, in reply to Rosemary McDonald,

    Service coordinations need to be based on ESSENTIAL NEEDS only.

    we (the MoH) only fund essential needs, (hydration, feeding, administering of medication, dressing, toileting, bathing. Food shopping. Support to get to medical appointments

    Why then do they ask the disabled person about their personal goals that the Ministry has no intention of supporting?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    • MOH does not fund lifestyle choice (ie where natural support would otherwise fill the need) – for example when the family refuse other government funded supports (ie
    rehab/respite or MSD funded day services).

    Presumably if you refuse MSD funded day services (if eligible) then you don't qualify for support from MoH to fill the gap that the day service would have filled? So, if say, Margaret Spencer doesn't send her son to a day service because it isn't suitable for his particular needs or he hates it or fears it, MoH won't provide support for the time that he could've been in the day service. His needs and wishes aren't considered.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    NASC must use the ICARe process to determine the need for direct physical support (hands on support needs) at all times ensuring that natural supports (not considering lifestyle choices such as full time work) are included in the support plan. Funding will be based on assessed support hours and will be based on core staff costs.

    makes sense if you take out the words in the second set of brackets

    NASC must use the ICARe process to determine the need for direct physical support (hands on support needs) at all times ensuring that natural supports are included in the support plan. Funding will be based on assessed support hours and will be based on core staff costs

    I can't make sense of it with the second set of brackets included. Can anyone else?

    Funding will be based on assessed support hours
    the Icare tool is a MoH approved method of working out the hands on support time a person needs. It has serious flaws but it results in a number which is the assessed support hours. That number is always lower than the actual support hours required because it ignores the time between hands on support activities, and because time estimates dictated by the MoH simply don't apply to everyone assessed. It takes longer to shower, dry and dress some people than others, for instance.

    and will be based on core staff costs
    ?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • linger, in reply to Angela Hart,

    Re: core staff costs -- my best guess is that the intended calculation is, roughly, (number of assessed support hours) x (number of people required simultaneously), possibly also with some fudge factor for (specialised-skill-dependent payscale required). Which, at least dimensionally, makes some sort of sense.

    Tokyo • Since Apr 2007 • 1942 posts Report Reply

  • Rosemary McDonald, in reply to linger,

    Re: core staff costs – my best guess is that the intended calculation is, roughly, (number of assessed support hours) x (number of people required simultaneously), possibly also with some fudge factor for (specialised-skill-dependent payscale required). Which, at least dimensionally, makes some sort of sense.

    Unless one needs two staff on duty at the same time to complete cares.

    One might be assessed as needing, say, two hours for shit, shower, shave dressing and installation in one's wheeled mobility device.

    It used to be the case that if one required two people to manage transfers (from bed to commode and from commode to bed and finally bed to wheelchair once robing is complete) then the formula would go something like...two x two hours = 4 hours of personal care. The allocation of Hours is based on ONE staff performing cares...if two are needed they won't double the core hours. So if you need two staff...you end up with half the actual hours of care. One or more of the 'sh s" will have to be done another day.

    One of the usual reasons for having two staff (other than situations of extraordinary behavioural issues) is when the 'authorities' insist that all transfers are done using a hoist. For many people who need full assist transfers, hoists have inherent risks which might be mitigated by having two people doing the work. The Miserly refused to double the PC hours under these circumstances....yet...Contracted Providers can refuse to provide care unless a hoist is used...even if this is against the wishes of the person being hoisted. This was one of the examples given in the HRRT hearing for the Family Carers Case, and one of the reasons why sometimes it is out of necessity, as well as choice, that family provide some or all of the care. The Mystery of Health system (and I balk at calling it a 'system') has little if any flexibility...and is designed by people who don't have a clue about the lived reality.

    ACC, in their Infinite Wisdom (actually a real fear of having their arses sued for not providing a safe level of care the entitled client needs) has written in their Guidelines that in some cases two carers will be required for hoist transfers and that this should be factored into to the overall allocation.

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

  • linger, in reply to Rosemary McDonald,

    The [MoH] [...] ‘system’ [...] has little if any flexibility

    Which in practice makes it a schistem, i.e. brittle and flaky, and not too far removed from something full of sh**.

    Tokyo • Since Apr 2007 • 1942 posts Report Reply

  • Rosemary McDonald,

    Service Providers struggle to make a profit out of disabled clients with high and complex needs...

    http://www.nzdoctor.co.nz/news/2016/november-2016/29/disability-services-want-funds-to-match-complexity-of-care.aspx

    Contract prices do not reflect the costs of meeting the Govern­ment’s service requirements, Dr Bennie says. This is most acutely felt for people with the highest and most complex needs, and he worries a tragedy is simply waiting to happen.

    “For example, there can be a considerable period of delay be­tween taking [such a client] and a funding package being agreed. There is usually no retrospec­tive payment and, as soon as they start making progress, the funding gets trimmed.”

    One provider recently had $200,000 taken out of fund­ing packages for a number of clients.

    Neglect, abuse sometimes happens

    When poorly resourced, pro­viders can have difficulty man­aging clients with challenging behaviours, Dr Bennie says. He admits neglect and abuse some­times happen.

    Some providers are turning high-needs people away rather than bear all the risks and re­sponsibilities, Dr Bennie says.

    Funding affects both quality and wages, he says. “We recog­nise support workers are grossly underpaid (on average, $17 an hour).”

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

  • Rosemary McDonald,

    More from NZ Doctor....http://www.nzdoctor.co.nz/news/2016/november-2016/29/disabled-by-a-system-straw-men-and-short-straws.aspx

    (okay, maybe the link won't work because of login requirements...but if a technomoron like me can get in...;-)

    This is a very good piece.

    Wellington GP Anne-Marie Cullen says talking to par­ents of disabled children and young people leaves her “shocked at the lack of supports”.

    Dr Cullen wants to see a drastic overhaul of services to make them more straightforward and bring them un­der one state agency.

    For people with very high and complex needs, the dis­ability sector and Ministry of Health-led new direction of “choice and control” is not going to work, Dr Cullen says.

    “This choice thing is a nonsense, and it is to the detri­ment of our most vulnerable.

    Actually, a seriously good piece of work, with quotes from Coleman, Toni Atkinson (head honcho at the Misery of Health Disability Support Services), Esther Woodbury from DPA and Garth Bennie from the New Zealand Disability Support Network.

    There is also a brief outline of the life and death of Nicholas Owen, whose parents...

    ...planned a gradual transition for their multiply disabled son Nich­olas from living at home to living in residential care.

    It was to start with three days a week. In part, this was respite for his parents. “We were getting exhaust­ed, quite frankly, and we needed a break,” Mr Owen says.

    “We thought, he can’t live at home forever, and he was the right age (19) to be learning how to live more independently.”

    The couple clearly communicated with the provider the routines required to keep their son safe at all times of the day and night, and stayed in regular contact.

    Nicholas died in care after about a year. It has left the couple feeling betrayed, Mr Owen says.

    Awaiting the inquest next month, he says serious events carry no financial penalties, so care homes have no incentive to provide a high standard of care.

    (my bold)

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

  • Angela Hart, in reply to Rosemary McDonald,

    Some providers are turning high-needs people away rather than bear all the risks and re­sponsibilities, Dr Bennie says.

    It's great to see professionals recognising the problems which the Ministry responsible continues to ignore or sideline.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    For people with very high and complex needs, the dis­ability sector and Ministry of Health-led new direction of “choice and control” is not going to work, Dr Cullen says.

    “This choice thing is a nonsense, and it is to the detri­ment of our most vulnerable.

    Hear hear, but will the MoH hear and act? It has chosen not to for a very long time.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    Dr Cullen wants to see a drastic overhaul of services to make them more straightforward and bring them un­der one state agency.

    I think the one agency thing is long overdue, but it cannot be the MoH and it cannot employ people from the MoH because of their generally entrenched prejudice and their inappropriate attitudes to disability.

    A stand alone agency would only have credibility if it was a shared enterprise with ALL of the disability community- not just the able disabled, and did not employ people who have been involved in the disability sector for years and done nothing worthwhile.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    maybe the link won't work

    They have a smart firewall that usually lets you visit from a tweeted link once. See if that one works.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    I can't get in via that link but I often see printed copies of NZ Doctor and it has some good articles and writers. I have also caught up with the TV pieces on Funded Family Care last weekend. Mike Wesley Smith's piece on the Nation last Saturday was excellent and shows the skill he brings from his legal background. I look forward to his future investigations. The item on Sunday about one family was also good but not as explanatory of the context.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald, in reply to linger,

    Which in practice makes it a schistem, i.e. brittle and flaky, and not too far removed from something full of sh**.

    Yep, you get it.

    And we're also looking at a schism, i.e. a division between the official narrative and reality.

    A gap that is unbridgeable, which leaves a whole lot of vulnerable people up the proverbial.

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

  • Rosemary McDonald, in reply to Sacha,

    Ah, but, if one googles 'nzdoctor disability' the magic of the interweb will allow a small(but very useful) number of articles one can read. But choose wisely...;-)

    I am a slow learner...

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

  • Rosemary McDonald,

    Taking my own advice (concerning, no?) I googled "high and very high support needs MOH DSS" and set the search tools to "NZ" and "past year", et voila! I arrive right back to this post on PA.

    Page one, with the other hits being mainly from the Miserly, or IHC mentioning 'high and very high' peripherally.

    No one is saying 'this is a problem and we need to sort it now.'

    Other than here.

    When were those people with high and very high support needs excluded from the happy clappy narrative put out by the Miserly saying that disabled people will live 'ordinary lives'?

    When exactly was this group consigned forever to the too hard basket?

    It is clear to me that the Misery expects family carers to take responsibility....and you know what?

    They know that we will do just that.

    Ideally we family carers should step back, fold our arms and say...."No, we are not going to facilitate your agenda to renege on your duty to provide safe and respectful supports to our loved ones, wait until we're dead or disabled ourselves and can no longer provide the care and then bung our loved one into the nearest residential facility to see out their possibly shortened days in the misery of compulsory incarceration."

    We should, but we won't...and the bastards know this. They learned about the commitment made by family carers during the Atkinson hearings...and look how they have treated the plaintiffs....and have got away with it Scot free.

    I was heartened by the story done by Mike Wesley Smith for The Nation. "Legislative lightspeed." Brilliant! I think he might have got it. And as Hilary said...his legal background gave him real insight into the magnitude of that shitty piece of work that is the Part4 amendment to the PHDAct and Funded Family Care.

    And was very telling that no DPO or carers organisation was interviewed....where is the advocacy?

    For those of you in Wellington...the Office for Disability Issues is hosting this...

    https://www.hrc.co.nz/news/open-disability-forum-take-place/

    The Minster for Disability issues is going to tell of the wondrous programs the government has in place for disabled New Zealanders. There will be an opportunity to ask questions...but they do prefer questions to be sent in prior, just so they can get the information asked for (of course).

    It is just as well Peter and I are unable to indulge in a wee road trip as I fear in our current states of mind we might find ourselves (yet again) trespassed or firmly asked to leave,

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

  • Rosemary McDonald,

    Almost as if on cue, and after a very long and extremely intensive Needs Assessment which included the assessment being peer reviewed by two other NASCs, our NASC has managed to manage Peter's allocated supports into negative territory.

    What was an allocation 56 hours of IF (which we've never used because me providing all of Peter's care works) and 100 days of the largely useless but nice to have to hand Carer Support Subsidy allocation.

    We now have 56 hours of IF and 48 hours of Carer Support allocation.

    This assessment was a routine three yearly one (albeit on steroids) with the overriding intention that it would be used to enable our NASC to coordinate with a Service Provider so that Provider would be familiar with Peter's care needs if I suddenly became incapable of providing his necessary supports.

    In the real world, this would be called a Contingency Plan which is a perfectly sensible and sane thing to have when a person is completely dependent on another person for the very basic of care.

    Two points which may be of interest.

    1) Had Peter held off his transformation from a Walking Person to a tetraplegic for another four years, ACC would be making him sign a waiver if he refused 24/7 care. (And they would pay me as his carer)

    2) The assessor who did the interRAI assessment had the "hours of informal care and active monitoring" as 33 hours over 3 days. 11 hours per day or 77 hours per week.

    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.

    So, we are now worse off than we were before.

    Giovanni Tiso, name the time and place mate, we'll be there.

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

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