It is also such a waste of resources. There has to be a better way.
There was a stab at facilitation/mediation a couple of weeks ago....the discussion inside the room is supposed to be confidential so I'll refrain from blabbing. Suffice to say, both parties were encouraged to find a mid point, a meeting of minds, 'because it could take a while to get to court, and there's no guarantee of success.'
Peter's cheery departing comment to the room was ..."Oh well, see you all in two years!"
Hilary...the expense of all of this, the cost to the taxpayer for both sides of the issue, really causes me deep anger.
On the other hand....and have no doubt about it...Peter and I and the other plaintiffs all see this as an opportunity to expose, yet again, the total balls up the Ministry of Health has made of supporting disabled New Zealanders. All of us have had nightmarish engagements with the system...they're supposed to be supporting us not making our lives more difficult.
And speaking of the total balls up that is the Ministry of Health....did y'all catch these interviews on Natrad the other day?
Applied to Minister?
No…the Human Rights Review Tribunal shortly after the Atkinson decision was released in January 2010. The Miserly claimed it needed the decision suspended until a year after the appeals process had been through in order to get the disability support system organised to cope with removing the discriminatory policy.
Hmmm…someone, and god knows why no one didn’t, should have reminded the Miserly and the Tribunal that at least 272 resident family members were being paid to provide disability supports…so they really didn’t need a new system. What would have needed looking into was the NASC assessment and allocation system with its emphasis on ‘natural supports’ and only funding ‘unmet’ needs. Yet again….many, many disabled people living with family had already an allocation of ‘hours’…all they needed to do was to allow them now to pay whoever they damn well chose.
If you have time Kevin…read that HRRT decision for Atkinson….still the very best description of the situation (and arguably, chaos) of home based care for disabled people with very high support needs under the Ministry of Health.
Such a pity that the Tribunal didn’t follow up on that good work and kick the Suspension Order into touch where it belonged.
Oh, and Aunty Ruth Dyson?
Oh dear....should have, could have...so why the hell didn't she?
We did ask her just that...a few months before the 2013 amendment to the Public Health and Disability Act. "It was only a policy, not the law,"she said, although to be fair, that was after we told her that the policy was being so routinely circumvented that we felt silly having refused to do a 'backdoor deal' ourselves.
I have this little fantasy...Annette King and Ruth Dyson locked in a room until they tell the truth about why the hell Labour didn't sort this shit when they had the opportunity.
Thanks Katherine...do you really think that there will be (hopefully sympathetic) interest out there in telly land for yet another one of these cases? Peter and I don't watch telly at all...so we're out of touch with that media. Any suggestions gratefully received...some of the other plaintiffs are dead keen on going to the mainstream media but caution is being advised as it could come back and bite in the bum.
Having said that...some of us have been kept circling the airport since 2008, and if the others have been quizzed by the OHRP as thoroughly as Peter and I have been at various times over the years then our accounts should hold up to scrutiny.
The enemy is always keen to find discrepancies and dirt to dish...anything to spin the narrative their way.
Peter and I honestly believe there will one day be a Public Inquiry into this and other disability issues...especially where the Misery of Health has had involvement.
Over the next few months I intend (as internet access allows) to share for discussion a few of the more significant aspects that will be thrown into the ring for debate.
Peter has had a few tumbles out of his wheelchair over the past 46 years... but it was the last one, a few months ago, that seems to have rattled him a bit. A combination of a new back on his chair (slightly, and almost imperceptibly more upright than before) and a too quick a turn after getting off the hoist in the Bus and it was all over. Sideways roll with his forehead hitting the crack in the concrete a fraction of a second after he extended his arm to break his fall. There is clearly a god assigned to such as Peter, as instead of broken bones and a head injury he came off lightly with a stunning black eye and lost facial skin. Even the 3cm diameter chunk he excised from his temple healed without much incident. It takes at least two, preferably three ABs to get himself back in his chair.
However...he got a fright. I got a fright. The offspring who happened to be home and was unable to assist when Peter's cry for help went out got a fright.
We've all had to learn to trust him again. Confidence lost, or even simply bruised, takes a while to recover.
Kia kaha, Chelle.
PS...a young lad with SB of my acquaintance was showing off to his schoolmates just how flexible his hip joints were not being fettered by any muscle tone. Threw one leg behind his head and snapped his neck of femur. They did operate.
PPS....Peter says to tell you that he broke his hip years and years ago and didn't know until routine X rays back in 1998. Despite being a tetraplegic he gets quite severe 'pain' in that joint. However...the Green Fairies make a balm...of which we have availed ourselves...and pain is controlled without the nasty drugs.
A member of the disabled community and former chief executive of the New Zealand spinal trust, Ben Lucas, described the tweet as unfortunate.
Ms Wagner had slipped up but her apology was heartfelt, Mr Lucas said.
"She is absolutely passionate about disability and making lives better for people with disabilities. Nicky is a yachtie herself and she just loves being out on the water.
"I think it's just an unfortunate tweet that maybe shouldn't have gone out," he said
Not having heard that interview on the radio yesterday I got one of the offspring to convey the gist by phone. " Who is this butt-snorkeller?" offspring asked.
Good question, child. Back in 2013 I was ejected from the NZ Spinal Trust facebook page for referring to the Misery of Health as, well, the "Misery" of Health. Or it may have been "the Miserly". Young Ben phoned us at home to tell us that they would not allow such disrespect as the NZ Spinal Trust was in receipt of funding from the said Miserly. Peter was still abed so the phone was on speaker...we all heard what he said. He later denied it.
Ho hum. No wonder the disability community is struggling... running to stand still...
Great post Fiona.
Social Investment can be code for “we are too mean and individualistic to invest in schools and communities so we are going to target and stigmatise a small minority of individuals and families, and then expect them to gratefully raise themselves into the middle class, or punish them more if they don’t”.
Bang on the mark...but you forgot the whole "building resilience" line.....some of us are so resilient we no longer have any expectations of the disability support system.
The apparent staff bonuses for doing that was the surprise.
Many, many years ago at a Disability Support Services Consumer Forum I asked whether NASCs received a bonus from the Ministry if they came under budget for the year.
Went down like a cup of cold sick with the Ministry staff up the front...round of applause from the assembled disaffected.
(They don't have these regional Consumer Forums anymore...can't think why.)
Seriously though...there must be some kind of financial incentive.
It's simply not human to keep denying folk salvation when its within reach.
– the government is here to help you but if the internal policies of the agency could limit or even prevent access – that is their real policy.
I stumbled across this the other day while seeking something else...
Disability support services
The Budget includes new funding of $42.296 million in 2016/17 and out-years for
disability support services. We heard that in June 2015 a shortfall of $45 million was
forecast for disability support services. We were told that the final shortfall was not as high as forecast because the uptake of the Funded Family Care policy was lower than projected.
A response to supplementary Estimates questions states that the expected shortfall of $45 million for disability support services has been significantly reduced because of careful demand management by the Needs Assessment and Service Coordination (NASC) services.
We asked whether any policy changes lay behind this management of demand. We
heard that the sleepover and funded family carer settlements and the new model for
disability support services had changed client and provider behaviour, resulting in cost increases. However, NASC services have saved $8.2 million by examining what services are delivered and to whom; also, some of the cost pressures were less than expected.
We subsequently heard that disability support services are not forecast to be overspent at year end. Some of us are not satisfied with the ministry’s explanation as to what the shortfall was and where the money came from to fill the shortfall.
The bold is mine, as is the shit formatting....
Do we think the ‘system transformation’ of disability support will prevent such things happening in the future?
But ok...lets be fair...here are direct links to reports on the three meetings so far.
They are still working on the terms of reference and spent some time stating the obvious..
We need to design the system to meet the needs of a diverse disability community
We discussed ‘diversity factors’ – a design tool that helps us to understand the breadth of the community. These are expressed as a range with an extreme at each end and lots of people in between. Some of the diversity factors we discussed were:
Limiting options to creating solutions. Some disabled people and their families lack confidence and focus on what they can’t do, thereby limiting the possibilities, while others search for and create solutions and options
Risk adverse to developing independence. This ranges from risk adverse and protective parents and carers, to those who support people to be independent and make choices about their life.
Willingness to engage or trust the system. There might be issues of fear, privacy, resistance about being labelled, tikanga, hoha, distrust of the Crown, discomfort about the assessment process or they live with dysfunctional families. Others have trust in the system and the people involved
Sense of identity. Some disabled people do not yet know where they belong while others have a strong sense of identity and of belonging
Socially isolated to strong peer networks
Visible impairment where other people accept your need for support compared to invisible impairments
Impairments fluctuate, needs are unpredictable and changing, while some impairments and needs are stable
Financial options. The type of life disabled people experience can be limited by a lack of finances which reduces the options available while others are financially stable and have more choice
Use of technology. Some disabled people have no access to, or any confidence with technology while others are at ease and able to use new technology.
This is entry level stuff.
I'm not sure what the benefit is of perpetually describing and defining disability, unless it is to avoid/delay describing and defining the many faults in the disability support system.
And another case of a person with autism being committed under the Mental health Act...this time, its a fourteen year old.
Karen Lende was left shocked, frustrated and angry when her son Jai Ferris, 14, was taken from the special needs unit at Spotswood College to Taranaki Base Hospital under the Mental Health Act.
When he came home three weeks later Jai didn't want to leave the house.
She didn't want him to be admitted but didn't have any say in the matter, she said.
Lende said a mental health worker had sent Jai to the hospital, but Taranaki DHB child psychiatrist Yariv Doran said he didn't know who had invoked the act.
But by the time a patient gets to the hospital they have been assessed by at least four people, Doran said.
"If anyone along the way thinks it's not justifiable it will stop, so if any client reaches our doorstep it means he or she has been seen by a few people before us and they are of the same agreement - this person needs to be assessed."
It had to be a massive crisis for the Mental Health Act to be invoked and an independent auditor assessed all patients admitted under the act on a daily basis, he said.
So, a child is committed and the child psychiatrist does not know who the individual was who invoked the Act.
This is extremely troubling, especially when Jai's Mum had been told how important it was to ...
... start a paper trail that might help her get some assistance,