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Access: Disability as a wicked policy problem

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  • Sacha, in reply to Rosemary McDonald,

    So readers are clear, that is a website of one of the largest few disability service providers, formerly known as CCS. However, good analysis and a salient concluding point:

    I think some hard questions have to be asked about the current direction of reforms. I cannot help but compare our reforms to Australia. The Australian Government and the Australian disability community has always been upfront with the Australian public that their reforms of disability supports will be more expensive, but will also be fairer. In contrast, the New Zealand Government has tried to create fairer supports within existing funding.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald,

    Invite to hui for Newsletter (1).pdf

    Regarding the above event....VERY well structured and equally informative.

    So pleased we attended even if only for the morning session.

    Will give a better report when I can get links to the power point presentations.

    Auckland Disability Law and Public Services Association (Neera and Amy) did a sterling job of presenting this potentially difficult issue.

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

  • Hilary Stace, in reply to Rosemary McDonald,

    Good to hear. I went to an excellent free seminar on disability law with Nan Jensen organised by Manawanui, earlier this week. So there are some good people trying to help people work with the systems we have.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    I went to an excellent free seminar on disability law with Nan Jensen organised by Manawanui,

    Where was that held Hilary? Was there any particular topic discussed?

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

  • Hilary Stace,

    In Wellington, but she travels around giving them as funds allow. Three hours of useful practical information. Power of Attorney, Trusts, Wills, capacity and competency, decision making etc. Very useful for parents worried about future.http://www.incharge.org.nz/?page_id=101

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Very good.

    The Auckland seminar was born out of the concern that a greater roll out of Individualised Funding (or the 'voucher' scheme that prompted this topic) could result in even more instances of a clashes between employment rights and disability consumer rights.

    Very, very finely balanced and nuanced issue.

    In a nutshell....greater control over the use of funds for support can only be a good thing for disabled people and their families....choice, flexibility etc.

    BUT, there have been instances where employees of IF users have taken a Personal Grievance claim against the IF client (who is the employer). Both sides are potentially vulnerable....both deserve their rights to be upheld.

    BUT...who takes precedence?

    Manawanui were at this meeting...a few jokes were made about them 'not being on the defensive'. It appears there may have been an instance or two where advice given by the IF Coach led to some confusion.

    ADL had fielded complaints from IF clients and PSA had fielded complaints from employees of IF clients.

    In a brilliant initiative....ADL and PSA joined forces to bring potentially affected parties together to discuss the issues, the law, employment rights etc.

    Full house...and the speaker of the day award has to go to veteran presenter and IF expert Phillip Patson.

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

  • Tom Adson,

    This is my first blog...ever, but I have become active around social housing, especially for the disabled. I am 71 and my wife is 69, and we have a family member who is disabled. With the help of the DHB the parents are the primary carers, but they are in their declining years and worry about who will become the primary carers when they become incapacitated or die. There are many in a similar position to my own family.

    Since Oct 2014 (carer time prior has been discounted) I have spent a lot of time, over 325 hours attempting to facilitate the procurement of a decent place for our family member to live well and independently. Other facts are put before you. Over 630 transactions have been attended to. 82 different organisations, many of them NGO’s, and others Govt, Regional and local Authorities and private commercial have been contacted. 90 different people have been communicated with, but the net output in terms of effective progress being made is zero.

    Everybody contacted has been positive, polite and as helpful as they can be, but often say “sorry it’s not our job”. Everyone is doing their level best. Most give me the impression they are frustrated. I have read piles and piles of words suggesting how things should/could/might work, and especially how it always tends to point at what ‘others’ need to do. The govt can’t do everything. I am frustrated too, like you all are; but accept that at some point words do very little to make real progress and positive change. At 71 years of age it is clear to me that it is time to roll my sleeves up and be ready to swing a hammer, push a brush, and swing a sickle, and pull out a few weeds; anything with a motor attached has been deliberately ignored. It is handy people who are needed. So! A few hours of my handy work have been used wrapping around one effective, but over burdened social service provider that connected with me. I will not use their name without first getting their permission. Privacy is something we have to respect and honour. I have found that volunteering is now not easy because of the need to apply of Health and Safety Regulations, even at the most fundamental level. Police Clearance takes 3 ½ months, because the Cops are overloaded with bureaucracy.

    The proposition of introducing Social Impact Bonds might have merit. If the hours I have expended are translated in to monetary value at the minimum hourly rate it would amount to $5,500 inclusive of GST. If this time/value is invoiced to the NZ Govt and they agree to pay for work done it could then be paid into my/a private bank account, and I could then donate that money to NGO’s in order to pay the cost of practical wrap around outputs like; foundations, bricks, motor and roofing iron to help provide appropriate social housing for the disabled and those who are vulnerable. The Govt have indicated that they have the money to do it, but they also have to make land available. There are empty State houses occupying land, and it is the disabled that should be at the front of the queue.

    Perhaps through our modern miraculous communication systems primary carers like me and you can band together and create locally approved volunteer working groups who can marshal the labour and practical skills that will create the homes and caring communities that our loved ones need. What do you think? Can it be done? Is it worth a try?

    Next time I blog, if there is interest, it is intended to address “Recovery Plans”.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Hilary Stace,

    Thank you for this insight Tom. Thank you for keeping a tally of your hours and interactions as I suspect this is not out of the ordinary. I am very interested in your ideas and it is at least heartening that you have found one receptive provider. I suspect that these will need to be local initiatives, teaming up with allies in the same region. I would be interested in hearing more.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Tom Adson,

    Perhaps through our modern miraculous communication systems primary carers like me and you can band together and create locally approved volunteer working groups who can marshal the labour and practical skills that will create the homes and caring communities that our loved ones need.

    You bet your boots we could do it Tom....sign me up.

    I get sick to the back teeth of reading stories of folk needing modifications to enable access and safe living...stuck in the mire of unreasoning bureaucracy, going absolutely bleeding nowhere.

    In days not long gone....the local service group...Lions, Rotary, Kiwanis...would have heard of the need, rallied the appropriate tradies roped in a few grunts, loaded up the trailer with donated materials from the local timber yard and got the job DONE.

    Getting the $$$ out of the Gummint might be hard....so many out there are on a good wicket with their sweet government contracts. They ramp up the costs and protect their patch avidly. These will be the ones who will go public with cries of "unqualified people putting disabled at risk".

    Maybe we should set up a 'guerrilla action group'....see the need, plan an attack, sort the problem. Ask no one for permission, put the person with the need first.

    Onya, Tom.

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

  • Tom Adson, in reply to Rosemary McDonald,

    I thought facts and figures might help for anyone out their doing research, as gut feelings which are often proved right are not enough. I have just been down in Lower Hutt CBD doing a rubbish clean up and some volunteer gardening for a local social service provider. Can I make a claim on social impact bonds, alongside a donation?

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Tom Adson, in reply to Rosemary McDonald,

    Well, that's two of us. All we need now is a couple battalion's in each modest town. Is it possible that the Lions, Rotarians and Kiwani's (is this a term you have invented?) and a few others could combine forces and work together. My understanding is that the Lion's are not really interested in the area of my most concern.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Hilary Stace,

    Apparently Seven Sharp has been doing a series of stories about Funded Family Care. Not sure whether they have shown yet as I'm afraid I just can't watch Mike Hosking.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    I’m afraid I just can’t watch Mike Hosking.

    I completely understand, Hilary.

    To be honest...i can't imagine what the 7 Dull, whoops, sorry, Sharp team could contribute to the issue.

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

  • Sacha, in reply to Rosemary McDonald,

    there will be violins

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    there will be violins

    Oh yes! And weeping, wailing and the teeth gnashy thing.

    And just maybe, for our younger viewers....a rending of garments!

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

  • Sacha, in reply to Rosemary McDonald,

    let's not forget the golden quips and banter

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Enough, please, Sacha.

    For Hilary's sake, I did watch the first 2 minutes on the Young People's telly...just to see if 'funded family care' got a mention.

    Spent the last 20 minutes scrubbing my eyeballs and syringing my ears.

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

  • Sacha, in reply to Rosemary McDonald,

    I hadn't even got to the baby talk (warning: contains simpering).

    Ak • Since May 2008 • 19688 posts Report Reply

  • Hilary Stace,

    Might not be ready to screen yet. Just heard they were working on it.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Angela Hart, in reply to Hilary Stace,

    I'm afraid I just can't watch Mike Hosking.

    same here, pity, because Funded Family Care is an issue of extreme importance. But I just can't watch/listen to this guy.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Angela Hart,

    OIA requests show that most of the NASCs covering people with disabilities claim to have no records regarding the number of support hours actually needed by each disabled person using Funded Family Care. That is, they DON'T KNOW the extent of the support needed, in spite of the 3 to 4 hour assessment interview people are required to endure, and in spite of the requirement under Funded Family Care operational policy (page 24, section 13.2) that the amount of unpaid disability supports provided to a disabled person will be recorded in their support plan along with the planned paid supports.
    The NASCs claim not to have a lot of the info they should have if they do their job the way they're supposed to. If I'm to believe the OIA responses, then NASC assessors (who often know sh*t about the disabilities they are assessing) are simply using their judgement to determine what to offer in terms of support hours, tempered by managers in order to keep costs down.
    Is it really too much to expect that a 3 to 4 hour extremely personal and probing assessment process should result in robust evidence of support need?

    This little problem has been brought to the attention of the MOH but don't hold your breath. Corrections can bury a major problem for 18 months, but they can't hold a candle to the MOH.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Tom Adson, in reply to Hilary Stace,

    This receives my support. Meaningful action will occur at the local level in the manner that it suggested. Primary carers know best what the needs of their loved ones are, but having good external services and professional guidance is essential. Much advice can be delivered through the web these days, but it is within the confines of a caring community where the rubber hits the road.

    We need to highlight what we have in common, what we need in common, and not dwell on our differences. Perhaps the age of individualism has passed and we are in a fork of the road. The right choice will move us back to the beginning in our minds, but move us forward in our actions to a better connected community where the most vulnerable will be dealt with first.

    Those who have enough to cover their needs do not need more, so if their taxation moves up a notch or two, which is probably not that much, it will be a good thing. I think the 'Prod Commission', as it could be more appropriately called has provided a clean sheet of paper. It is now up to us to create and pencil in a good and workable plan. Once that is done lots of investment and hard practical work will be required. A key output will be better services and more houses appropriately designed for the disabled... that's the real challenge.

    Lower Hutt • Since Jul 2015 • 35 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Corrections can bury a major problem for 18 months, but they can’t hold a candle to the MOH.

    Damn right....the Misery of Health are in a class all of their own.

    Needs assessments through the NASCs are, and always have been unbearably odious and based on the premise of only assessing for 'unmet' needs and the insistence that the client exploit all their 'natural resources" before any paid supports are put in place.

    Well...the concept of 'natural supports' was discussed at some length and depth by the HRRT in Atkinson et al. The Tribunal suggested that there should be a test of "reasonableness" to acertain the level of support resident family should be expected to provide.

    I suspect the Tribunal assumed the Miserly of Health understood the concept of "reasonableness".

    There is another protocol for assessment of support needs in operation in NZ...also time consuming and "probing"...but almost inevitably results in a considerably higher allocation of hours of funded care.

    For two groups of impairments...cerebral palsy and spinal cord impairment...where some are ACC and some are MoH. The ACC clients are allocated a shit load more hours of care than a MOH client with exactly the same level of impairment.

    And YET....the 2008 joint MOH/ACC Home and Community Support Services document....http://www.health.govt.nz/system/files/documents/pages/hcss-implementation-guide-mar09.pdf...

    seems to suggest that the two groups should be treated the same....more or less.

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

  • Angela Hart, in reply to Rosemary McDonald,

    seems to suggest that the two groups should be treated the same....more or less

    which makes sense, provided the same is at a level that meets their needs. The present situation tends to produce two classes of people, those who can't afford to do anything but exist precariously, and those who can live a good life - as the disability blurb puts it.
    When people from the two groups mix, there is cameraderie, information exchange and such practical help as can be given- but also some degree of shocked disbelief from ACC recipients that MOH folk are so poorly catered for.
    The level of ACC support for SCI is not luxurious or unnecessary, but practical and needs based so it really is difficult to understand how people with the same impairments can be treated so differently by the Ministry of Health- the agency specifically tasked with supporting disabled people.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Angela Hart,

    The gap exists because successive governments have allowed it to.

    Ak • Since May 2008 • 19688 posts Report Reply

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