Ministry of Health make me feel like a criminal
Update: It would appear this issue is much bigger than my rant below. People are being treated like fraudsters and criminals by the very system designed to support them. This is going to blow up. Watch this space.
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I get a phone call this morning from IRIS, who manage my support services, and it goes like this:
IRIS: So… Looking through your latest report, it says here your support worker is your sister?
Me: Yes, is that a problem?
IRIS: Well, the Ministry have said that family members living in your home can’t be your support staff.
Me: But when I signed up for Individualised Funding, you said that it would be fine..?
IRIS: Not anymore. We can provide you with a support person until you find another one, but right now she can no longer work for you.
So what am I supposed to do, IRIS? Not get dressed in the morning? Go through the rigmarole of hunting down, interviewing, selecting and training another support person? Cancel an arrangement that’s working so well for me at the moment? Therein lies my biggest frustration, really – my support systems have never been as good as they are right now, and the Ministry want to take that away? I’m sorry, but fuck that.
I checked it out with my sister, and she tells me she’s living at her boyfriend’s for now. So I rang IRIS back to tell them the good news. My case manager tells me she’ll ask her boss if they will “accept this” and get back to me, but would I like them to send one of their staff over anyway?
No, IRIS, I wouldn’t.
This isn’t any old job. This is my life: my wellbeing, my independence, my dignity. Right now, my sister is doing an exceptional job, and she will continue to do so. Why on earth are they so hell-bent on removing what works so well?
More than anything, why do I get this uneasy feeling that I’m “in trouble”? I hate it how, as disabled people, we’re locked into these systems whereby you constantly feel like you’re in danger of breaking the rules, not that anyone really knows what the rules are. It’s the same thing if you’re on an invalids benefit, where you’re never really sure how much you can work in fear of having your benefit cut, so you don’t do anything. All these systems, rules, and other fucking people managing your life keep us in shackles, for the benefit of the bureaucrats who spend taxpayer money on fucking porn movies.
Frankly, I’m over it.
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My question is: How is this time-wasting harrassment, remotely common sense? If the disabled person is happy with the arrangement and the funding is there, WHY are people in admin positions spending SO MUCH TIME trying to sabotage somthing that is working. They are being paid for their time, so they should be using it to make a positive contribution to the disablity sector….or is it that they really have nothing else to do to justify their job status and salary??
IRIS and the Ministry of Health are run by able bodied people who have no idea about the real everyday lived experienced of disability. They use the charity model of disability, and preach respect for people with disabilities, but have no idea. The people at the top just do it for the money.
It needs to blow up. The system needs to be shaped and run by the people who use the services.
I think we are at a point where people who are or who support those with a disability have had enough…this is going to blow up and it is a long long time overdue. Stay strong everyone…I sense change in the air…andn things need to change pretty bloody quickly…Human rights are being violated here on many many fronts
excellent update Red…Love it
Good on you Red. We should all send our concerns to Tariana Turia: T.Turia@ministers.govt.nz. This will indeed blow up! Disabled people need to unite! Come on everyone! We are all targeted!
here here. walking over rated, common sense under rated.
It is now a crime to be disabled and sick in the USA. Once again when factory farms have pushed the price of groceries to the max My Government says we do not need an increase in Our Pensions. They are not entitlements I PAID big time into this retirement plan. 2 years in a row. BTW they do not use food in calculating inflation in my country. Like you can live without IT? I do not know where you are but the USA is gone. It’s not the country I grew up in. CRIME is rampant. 1/5 of the people are homeless and most are searching for work and there is no jobs. They show on tv the top 2% and the world thinks that is the USA> NOT! The news people are all rich so hey they cover themselves and the rich. That’s it. I bought a seperate disability policy years ago to pay half my pay. I get around $300. a month from the policy or I would starve. Is $300 half of $44,000 a year? NO and not a thing I can do about it. I am too old and sick to fight anymore. I just wanna survive.
Never buy Hartford Insurance or belong to the Rural Carriers Letter Carriers Union. It’s a joke they represent themselves also. Dont waste your money save it in case you get sick.
Ursula uses the word ‘sabotage’, Tony and Franky say ‘blow up’….I do hope the Misery of Health has a sense of humour! Seriously, it is way past time for change.
It appears to me that spokespeople for the disabled and their carers have maybe taken the wrong approach.
Instead of trying to get alongside the decision-makers and sitting on committees and trying to change the system from within, perhaps a more direct , maybe confrontational approach might be more effective.
It would ,however, require warm bodies out there, in public, collectively.
What have we got to lose?
I agree, Red. It is absurd and ridiculous and frankly, so sad that we are made to feel this way by the very system that is supposed to help us out. It is a huge, widespread problem. If only the Ministry of Health took the time to really think how they are restricting people in their every day lives.
I am ready for a public collective confrontation! Down Queen Street?
Is shit hitting the fan Franky?
Shall we contact John Minto?
I’ll be one of those warm bodies! Red, I think it’s awful you live with the feeling of being ‘in trouble’. If the MOH was keeping in step with the essence of its recent Whanau Ora document, they would see that supporting family members as carers is what ‘empowering families’ looks like. What’s more, the NZ Disability Strategy’s objectives 7.1 stating that ‘individual needs are treated flexibly’, while 7.2 will ‘ensure that the disabled person is at the centre of service delivery.’ I don’t see how your experience aligns with the principles of client-centered practice.
Yes, Red but I no longer feel comfortable talking through a public forum. Those ‘warm bodies’ ready for action, please email me f.lewis@paradise.net.nz.
The Disability Strategy is just so much more happy clappy meaningless bullshit. However….it is the only thing we have to work on….so how to get the creators of this document to actually implement it. Whanau Ora goes some way…but will it apply to non-Maori?
Maybe we need to define some of the terms that are bandied around…what is mean’t by “flexibility”, “choice”, “dignity”,”equity”, “respect”, “connectedness”, “freedom”,”natural support”..etc.
Peter can define these in his terms as a person with a disability, and I hazzard many other disabled folk would have similar definitions…..
Peter and I bulldozed our way into the Head Office of the Misery on Molesworth Street in Wellington…and while we did connect on a certain level with one official….we were lone voices crying in the wilderness.
WE DONT NEED JOHN MINTO’S RENT-A-MOB SERVICE!!!!!
Disabled, their families and their carers have more dignity than that surely?
We must pick our issues.
We must offer realistic options to the status quo.
We must NOT be greedy or excessive in our requests/demands.
We must be NEEDS focussed.
We also should be able to discuss these issues in a public forum. Suspicion and secrecy are part of the problem.
Rosemary,
I really like all the postings you have posted over the last few days but right now MoH is investigating me and taking our valuable support away without even have met our disabled family member. They are playing according to their own rules and don’t seem to give a toss about the Disability Strategy, the Code of Rights (which has no jurisdiction on them) and our Human Rights for dignity and respect. So what do you suggest in terms of realistic options? Personally, I need all the help right now. Someone needs to gather all these “warm bodies”. Who could that be?
Greetings Franky, I hear your desperation…and you are not alone. Might I suggest you approach CCS-Disability Action as they may know of other carers in your situation. Or,contact your local Health and Disability Commision Advocate and beg if necessary for support and advice. Contact your NASC agent/service coordinator..who should be aware of your disabled family member’s needs, and also be aware of the level of care that you provide..They (the NASC agency) are the ones who allocated your Carer Support Days in the first place…go in and see them face to face taking your disabled family member with you…and demand that they tell how you should have used your Carer Support.
I personally believe that once the Days have been allocated that should be the end of the Misery of Health’s interest, unless you try to claim more than your allocated days. I was told by an official some years ago to be ‘creative’ when utilizing my Days…that those funds were for supporting me in whatever way I felt was appropriate.
Flexibilty in the use of Carer Support would be high on my list of issues.
Paying Resident Family Members who provide core care services(as opposed to what could be reasonably be considered ‘natural supports’) would be up there around the top.
The No 1 issue would be the number of hours per week of care a disabled person gets allocated. I have heared of people being bundled off to residential facilities because they need over so many hours per week to stay in their own home..and the Misery would rather fund for institutionalized care, even if that would cost MORE than increasing the hours under IF.
What reaalllyy bugs me is tha amount of $$$$$ the Miserly of Health has wasted producing Strategies, reports on Consumer Forums, consulting Advisors and investigating what it considers to be innappropriate use of FUNDS THAT HAVE BEEN ALLOCATED ON THE BACK OF WHAT CAN BE AN ADVERSARIAL NASC ASSESSMENT.
Our situation is well beyond what you are describing…
Hear,hear Rosemary. I am dumbfounded too on how a brilliant opportunity was wasted in 2001 with the NZDS. I was coaxed onto the reference group committee and feel it contributed to major psych trauma in my life. I tried, and tried and tried to say how far it really went up the wrong path; it specified so much about what constitutes value, that it narrowed down the path on ‘approved’ ways to live, be and think. It defined ‘inclusive’ so that indeed there became ‘those who saw the light’ and ‘dissenters with no understanding’, ie, it indicated an exclusive cult. I’ll always have to be wary of how much it took for me to understand the mentality, and not get stuck in such painful contradiction of that world again. In practice, the same old probs in different garb emerged. I can’t say whether or not disabled people themselves are better to lead in what is necessary. In my experience, that is part of the unfounded advocate dogma that discourages constructive thought and critique. I’d welcome a crip or noncrip if they know their stuff. Someone who is trained to be above selfinterests has always been great to work with. I know that I don’t have that skill when it comes to crip affairs myself.
Excuse the infliction of my own theoretical fluff amongst others really finding things tough with hard day-to-day issues.
(excuse me making that last post a fraction clearer)
… That is, I agree with Rosemary for her overall frustration with the NZDS. I ain’t too shook up on having a legislative doc tryna set out normative values, though. I would go one step back from that and suggest that it should be known that how we value our own lives is up to each of ourselves as individuals.
Keywords have been mentioned above. Respect is a word I could never work out as a young kid coz it was always something Mum yelled vehemently at me for not having, often when I tried to do something to please her, and she just didn’t understand that I intended the best!! Um, I think plenty of people have a rigid notion of what respect somehow is. Is it treating others how you would want to be treated? Um, well actually, I think not… I think it entails working out some room on what would satisfy myself that I was treating another well which corresponds with what that individual themselves would also appreciate. Arriving at that conception also helped me understand that each of us can treat individuals in any way we want, but valuing and respecting them means doing so in such a way that is in accordance (or in the most gentle and fairest negation possible) with however they see the world.
If/when changes in anyone are needed, it is amazing how people can change when they’re not forced to, if/when that’s an option inevitably made sensible to them in their own terms too. I have a feeling that the NZDS sees ‘respect’ and ‘value’ in more school-marmish terms.
Similarily, and as an example, I cringe when I hear some crips say to the media in blanket terms how undignified it is in circumstances where they have to crawl in public. Bloody hell, for me, I love it when I can crawl around in public places without being accosted by some wacko do-gooder afraid I’m hurting or degrading myself! With a bit more forethought and encouragement, I think there is enough room for us all.
Me back again! Red, mate, I feel a bit guilty about dominating your website…..but people are responding so I’ll have another shot.
PEOPLE WITH DISABILITIES AND THEIR FAMILIES NEED A VOICE!!!!!
There are too many splinter groups, too many loud individuals with their own agendas and ideaologies, too many do-gooders(wacky or otherwise Kay) who think they know what is best for all disabled. There are also too many so called representatives of disabled and their families who are compromised by having some sort of finnancial relationship with the Ministry Of Health.
The end result being that the waters are muddied, the pool has been shat in and we are no better off than we were 34 years ago.
Why 34 years????
ACC was born 34 years ago…and overnight, people who became disabled as a result of accidents had rights and privilages protected by law.
ACC has to provide treatment and rehabilitation. ACC has to provide ongoing care. ACC has to provide necessary equiptment and medical supplies. ACC is legally obliged to do its utmost to bring that injured person to as near pre-accident function and health as possible. Entire squadrons of lawyers are kept in beemers forcing ACC to meet it’s legislative obligations.
Show of hands please….how many out there in MOH cripple-land would love to be adopted by ACC?
Why?
More hours of home-bsaed care, AND family can be paid carers.
Better wheelchairs, and beds, and your existing equiptment does NOT have to be ‘beyond economic repair’ before assessment for a new one can begin.
Medical treatment, such as botox, baclofen pumps, bladder and bowel proceedures etc. are routine rather than a big deal.
ACC are obliged to facilitate employment(if that is what the client wants)
ETC.ETC.
ACC was a good idea in theory, but has not only left non-ACC disabled literally out in the cold, but has contributed massively towards ongoing rescourcing for non-ACC disabled.
Peter and I say that there should be complete parity between ACC and MOH in respect of medical treatment, supplies, equipment and personal care.
We are NOT saying that non-ACC disabled should get lump sum payments and $100,000 vehicles and any of the other compensatory aspects of ACC…. just that NEEDS are met to the same level and with the same conditions.
Thank you for taking the time to read this.
(now I betchya someone will come along and presume that my only beef is to do with not being free to crawl… I meant to just illustrate how the word ‘dignity’ is often just cumbersome, at times just adding even more restrictions ontop of our physical ones. It’s just up to individuals to say what matters to them, or not, and a more discerning public to grow a brain and not be so general)
As for ACC – weren’t they just in financial strife too, recently?
I know the feeling, Rosemary, of feeling like you’re dominating the group, but you’re fine. It’s evident that you’re just being genuine about your concerns.
Thanks to Red too, for deleting my messier post as I asked him too.
cheers all.
Crawl Kay crawl! I’m am sure I read somewhere that the crawling stage (for babies, that is) is a vital step in becoming fully orientated with the world….unless you learn about life at ground level you never fully learn to live at higher planes.
Yes, John Key got a nasty shock when he won the election and realised that ACC so far up finnancial shit creek that it was going to take AT LEAST 1.2 billion dollars extra from the general tax take to keep in from going under.
Personally, I would have let it sink, then designed a system that was fair to all New Zealanders.
But don’t get me started!
Interesting bit of knowledge gained by moi this week….The Irish Government spends three times more than the New Zealand Government on disability supports.