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

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  • Rosemary McDonald,

    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.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Rosemary McDonald, 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!

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Kumara Republic, in reply to Rosemary McDonald,

    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.

    Were mental institutions really abolished years ago?

    The southernmost capital … • Since Nov 2006 • 5415 posts Report Reply

  • Rosemary McDonald, 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.

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Rosemary McDonald,

    Waikato, or on the road • Since Apr 2014 • 1344 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    CCGs [the UK equivalent of NZ's NASC agencies] were setting limits on how much they were prepared to pay for supporting people in their homes compared to an “alternative option”, which is usually a care home. They were willing to pay between 10% and 40% above the care home option, which will often not be enough to keep someone in their own home.

    That sounds awfully familiar already.

    Ak • Since May 2008 • 19680 posts Report Reply

  • Rosemary McDonald, 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 • 1344 posts Report Reply

  • Rosemary McDonald,

    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 • 1344 posts Report Reply

  • Rosemary McDonald,

    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 • 1344 posts Report Reply

  • Hilary Stace, in reply to Rosemary McDonald,

    Looking forward to talking to him. That's my electorate.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    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.

    It's more than that. It isn't a valid choice for some people because the residential care facilities lack the capability to meet their needs.

    This is recognised by the MoH only for the sub group which poses a danger to self and others, this sub group apparently qualifying under MoH policy for individual home based care.

    However the MoH remains deliberately seemingly appallingly ignorant of the fact that the remainder of the small group whose needs cannot be met with the present day residential care regime are at high risk of increased incapacity and death when forced into this situation. The message that is regularly sent by the MoH when its representatives, the NASCS, threaten residential care to these people is "you don't matter, we can do what we like to you, and frankly if you die sooner, it'll save us money, which is what really matters to us. "

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • 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.

    An earlier story reports some testimony at her trial:

    Medical professionals denied that the system had painted Donella into a corner. They said that 252 days a year of respite care was made available to her - a higher allocation than anyone else on their books. She could also choose the carer. Health records show Donella was getting "regular and sufficient" breaks away from Ruby.

    One support worker told the court Donella had rejected residential respite options and was a person who "dwelt on the past".

    This is a disturbing and complex situation. Somebody might want to do a separate post about it?

    Ak • Since May 2008 • 19680 posts Report Reply

  • walrus, in reply to Sacha,

    They said that 252 days a year of respite care was made available to her – a higher allocation than anyone else on their books. She could also choose the carer.

    Betcha those 252 days of "respite care" were actually Carer Support--ie not respite, not days, and not with paid carers.

    Auckland • Since Jan 2015 • 13 posts Report Reply

  • Sacha,

    Incompetent agencies finally act after publicity, but Housing NZ still manage to offer a rare accessible house to non-disabled people ahead of a wheelchair user who had been living in a car with her family for 2 months.

    Ak • Since May 2008 • 19680 posts Report Reply

  • Angela Hart,

    another in the long, long list of situations where a government agency has failed to do its job until media picked up the story. It seems almost the norm now.

    I can't help but wonder what was so wrong with the house that the several families who didn't need wheelchair facilities all rejected it. I hope whatever is wrong does not impact too badly on this family who really have no choice.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Angela Hart,

    Might have been in wrong location for their needs?

    Ak • Since May 2008 • 19680 posts Report Reply

  • Sacha, in reply to Sacha,

    Simon Collins touches on many of the systemic problems around autism support services.

    Ak • Since May 2008 • 19680 posts Report Reply

  • Angela Hart,

    The lack of movement, the difficulty in obtaining timely, practical, knowledgeable help just doesn't seem to be addressed. Where is Ashley Peacock now?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, 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 • 1344 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

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

    Ak • Since May 2008 • 19680 posts Report Reply

  • Rosemary McDonald, 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 • 1344 posts Report Reply

  • Angela Hart, in reply to Rosemary McDonald,

    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.

    and to state the obvious- problems don't get fixed until those with the power admit and accept that there is a problem. We can't seem to get past that first hurdle.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha,

    Ruby Knox's DHB is commissioning an external review of its 'high and complex' support services (by Rosemary Marks, the audio track said).

    Ak • Since May 2008 • 19680 posts Report Reply

  • Angela Hart,

    Ms Butcher said the lack of follow-up from agencies was a problem.

    The petition would call for an over-arching agency to be set up "that oversees, reviews and controls all government sector services and agencies that currently fail us".

    "While there is a lot of support, there's a lack of follow-up, throughout every government service,

    There is theoretically a lot of support. At some times and stages the support available meets the needs. But for high and complex needs adults in the main, it just is not there. Some families seem to navigate the system exceptionally well and obtain sufficient assistance but most of us cannot.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Angela Hart,

    The petition would call for an over-arching agency to be set up

    That has been a rallying call for many years. Pros and cons.

    Main benefit is one place to go that understands the experience of disability. Ministry of 'Health' still seems to believe it's about being sick longer before getting back to 'normal'. Having only a rehabilitation academic on this govt's social welfare change committee did not help that at all.

    Ak • Since May 2008 • 19680 posts Report Reply

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