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Access: It’s just a bout of Chronic Sorrow

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  • Sacha,

    Oh, and thank you for the post, Hilary. There's a parallel process for disabled people of reconciling our lives against the stereotyped ones we all swim in. As I've said to some policy wonks, it's not like everyone grows up to be an astronaut or pop star, yet we don't put so much weight on that grief.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Joe Wylie, in reply to Sacha,

    However the current service system is so broken that vouchers may actually be a disruptive improvement – but only if they’re implemented alongside investment in market information and advocacy mechanisms. And whoever sets the value of the vouchers will still have too much control of the results.

    Hasn't Roger Douglas long advocated a voucher system for such things as education, along with his crackpot flat tax rate? Hearing this from English struck me as an attempt to revive the agenda by stealth, starting with the most vulnerable.

    flat earth • Since Jan 2007 • 4593 posts Report Reply

  • Sacha, in reply to Joe Wylie,

    Neolib crackpottery, yes. I'd never want us to try vouchers for education, etc, but the disability support system is so misaligned I can't dismiss the potential value.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald,

    Hey. EGL sounds great!!!!

    http://www.odi.govt.nz/what-we-do/improving-disability-supports/enabling-good-lives/key-messages.html

    All those positive happy clappy words, strung together by a team of joygerms on P.

    "Service Providers will....

    •work to ensure community (generic) options are exhausted before specialist services are considered "

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

  • Hilary Stace,

    I have a friend whose high needs autistic daughter is soon to leave school. There are no providers locally for her for any suitable day programmes and no providers keen to provide suitable accommodation, considering she would need 24/7 care (literarily 24 hours as sleep is minimal and night time destruction common) and any other flatmates would have to be very carefully considered. The only thing suggested is that the mother moves out and a provider uses the family home as the residence for the disabled young adult (although no provider has actually offered to do this).

    Leaving school only means that the mother has about 8 more hours of care a day to do. Funded Family Care is not an option as the daughter in that scheme has to be the employer, and if an agent is brought in to do the employment responsibilities that takes a large amount of (non-existent) money.

    There are several such high needs adults around NZ. I can just see a voucher being thrown at the ageing parent by the Government and saying, 'Sorry, it is solely your problem now'.

    My friend is one of the wisest people I know for how the system works, doesn't work and could work better. She also helps numerous local people. An innovative disability support system would have her at the top level of expert advisors (along with Rosemary McDonald of course). Instead her life is one long struggle day by day, stuck at the mercy of government policy and whatever agencies might decide to provide whatever services they consider economically viable in her area.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Rosemary McDonald,

    So, if Local Area Coordinators are going to do the Service Coordination part of the Needs Assessment and Service Coordination providers, then they will surely drop the the Service Coordination part of their title....and become...

    NA!

    Or yet another layer of bureaucracy taking precious funding away from the actual disabled person.

    This has been a carefully constructed state solution to the problem of disabled people demanding more control over their lives.

    "Here's a personal budget, DP, to use on whatever you like, providing you use the service providers who have contracts with us...the government".

    Makes this document, from the UK, all the more pertinant...

    http://www.demos.co.uk/files/At_your_service_-_web.pdf?1256725103

    SSDD.

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

  • Angela Hart, in reply to Sacha,

    disability support system is so misaligned I can't dismiss the potential value.

    Absolutely. And the EGL model certainly has the potential to improve things. The trouble is this government has an established pattern of twisting what it does to fit goals of cost reduction and reduced government involvement rather than putting people first. It's difficult to trust that anything they do will be genuinely set up to be helpful primarily rather than primarily cut costs and devolve responsibility. They've really earned that loss of trust.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    An innovative disability support system would have her at the top level of expert advisors (along with Rosemary McDonald of course).

    That's intended as a joke...right?

    We all know that the only true 'experts' are those who are in paid employment, of some sort.

    They have a title, a job description, dignity, credibility, reputation, kudos, qualifications etc. etc.

    They control the narrative, the discussion.

    Me?

    I am just an unpaid carer, a beneficiary, who's status as a New Zealand citizen was further diminished as a result of the PHDAct(2), and especially section 70E.

    It's OK for Claire Teague (who of course has no conflict of interest) to go on public telly and express concern that if I were paid to do what I do...well...that's a worry as I did not have the skills the 'professionals' do.

    It's OK for Barry De Geeste (who, of course has no conlflict of interest) to tell me publicly that paying family carers (like me) would lead to "abuse, neglect and exploitation".

    Now, if I make a comment about disability or carer issues...I am (quite rightfully) expected to back up my comment with some sort of official documentation....evidence.

    Teague and De Geeste can make those statements without having to present any evidence to back up their, what are in effect, libellous claims.

    Why?

    Because they are being paid to represent the interests of the disabled community.

    Me?

    As one (paid employee from an NGO) told me on facebook some time ago...I'm just producing so much 'white noise'.

    I got the message.

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

  • Hilary Stace, in reply to Rosemary McDonald,

    But you know what it is like to be on the wrong side of the front line

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    That conflation of roles is a problem. Neither of those people are "being paid to represent the interests of the disabled community".

    NZDSN represents the interests of disability support service providers, full stop. Barry runs a service provider. However he also has a very long history of advocacy for disabled people, which he is also one of. Over the years he has seen cases where families have taken advantage of disabled members' service funding so I not surprised he is sceptical. It's an ongoing tension in any system.

    Barry holds no mandated community representative role any more, so far as I know. But when the people and organisations (DPOs) who do hold such roles stay so meekly silent, it's no surprise that service providers (especially the largest, IHC and CCS) and other allies like family members feel compelled to fill the vacuum.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Na!

    Salts of the earth.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    if Local Area Coordinators are going to do the Service Coordination part of the Needs Assessment and Service Coordination providers

    Then I hope they do not just keep the same people and swap the job titles. A different focus/skillset needed.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    That conflation of roles is a problem. Neither of those people are "being paid to represent the interests of the disabled community".

    NZDSN...I suggest you have a gander at their "Vision " page on their website, http://www.nzdsn.org.nz/nzdsn/about/
    "Vision
    An inclusive New Zealand where all disabled people are included and valued, their human rights are promoted and protected, and they are supported and encouraged to maximise their potential.

    Values
    NZDSN believes that the human rights of disabled people must be promoted and protected and that when injustices occur that we have an absolute responsibility as individuals and as disability service proviers to intervene and ensure people are safe.


    and check out how much the government has funded them (on top of their subscriptions from govt funded providers) over the past few years.

    Barry De Geeste has been on the Board of the NZDSN since when????

    Claire Teague biggest sin in my book was implying that the reports of abuse and neglect at the hands of her members was a media beef up and her response to the Putting People First report was to see it as an opportunity to work with the MOH on the "perceived lack of confidence in service provison".

    All I am asking for...no...demanding... is fairness.

    The denigrating of family carers by service providers without the service providers fully acknowledging THEIR gross failings is unforgivable.

    Not that they would ever offer an apology....being the paid advocates of the disabled.

    Actually, when you follow the money, you have to agree with Barry, that paying for supports...be it services or advocacy...does actually increase the risk of abuse, neglect and exploitation.

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

  • Bart Janssen, in reply to Sacha,

    Neolib crackpottery, yes. I’d never want us to try vouchers for education, etc, but the disability support system is so misaligned I can’t dismiss the potential value.

    But this isn't about trying to do it better for those in need.

    It's about doing it cheaper so the Nats can get their surplus and then give the rich another fucking tax cut.

    Yeah there is potential value but that could only be realised if there is constant oversight and investment in the providers chosen. You and I both know the task will go to the lowest bidder.

    Auckland • Since Nov 2006 • 4460 posts Report Reply

  • Bart Janssen,

    And thank you Hilary.

    As always your experiences are valuable for those of us on the outside.

    I wanted to use the phrase "lucky enough to not have to deal with it" but I don't think that fits, since you've so ably demonstrated that you ARE lucky. I don't think I have the language skills to convey quite what I mean.

    Auckland • Since Nov 2006 • 4460 posts Report Reply

  • Hilary Stace, in reply to Bart Janssen,

    Thank you Bart. Perhaps it could be 'lucky enough to not have to deal with it ... at the moment'.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Hilary Stace,

    I've been having a bit of discussion about 'inspiration porn'. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can 'overcome', and not about the viewer having to challenge their own practices or attitudes.

    Stella Young expressed it best in this TEDx talk
    http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much/transcript?language=en

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Joe Wylie, in reply to Hilary Stace,

    I’ve been having a bit of discussion about ‘inspiration porn’. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can ‘overcome’, and not about the viewer having to challenge their own practices or attitudes.

    Stella Young expressed it best in this TEDx talk

    Thanks for the link, refreshingly down-to-earth stuff.
    I’m very uncomfortable with most attempts to make poster people of those with disabilities. Perhaps my feelings are coloured by my dealings with intellectual disability, because ultimately there are no kudos in being ‘stupid’. Being famous primarily for having a disability seems to always invite a degree of condescension. No matter how well-intentioned the casual observer may be, unless there’s a real attempt to establish our common humanity rather than our differences there’s always the shadow of the gentlefolks visiting Bedlam as a form of diversion.

    flat earth • Since Jan 2007 • 4593 posts Report Reply

  • Kumara Republic, in reply to Hilary Stace,

    I've been having a bit of discussion about 'inspiration porn'. It is to do the viewer having stereotypical assumptions about disability as an individual thing that people can 'overcome', and not about the viewer having to challenge their own practices or attitudes.

    Which brings me to the 'motivational psycho-babble' I mentioned upthread that I find irritating rather than reassuring. It's all too easy for those who've already climbed the ladder to play Pollyanna - it's as if they think Asperger's is a brand of beer.

    The southernmost capital … • Since Nov 2006 • 5441 posts Report Reply

  • Sacha, in reply to Bart Janssen,

    constant oversight and investment in the providers

    I'd go with that in the recipients and strengthened advocates instead. Might actually cost less than the army of provider contract monitors currently employed.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Kumara Republic,

    it's as if they think Asperger's is a brand of beer.

    focused flavours, crisp finish

    Ak • Since May 2008 • 19740 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    being the paid advocates of the disabled.

    No. They simply are not. They are advocates of service providers. It does us no favours to be unclear about roles. That's why one of my first posts here was about the topic.

    Ak • Since May 2008 • 19740 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    Good to have that reminder, Sacha.

    There has been some useful and informative material from a variety of authors posted on Access over the last year, and great discussion. Thanks to Russell for setting it all up and to everyone for contributing. Must be about time for a first birthday celebration.

    Wgtn • Since Jun 2008 • 3226 posts Report Reply

  • Erin,

    This is a very well-written collection of thoughts!

    I am a disabled person, not a parent of a disabled child, but I sometimes feel similar in regards to the "grieving the what could have been" thing. I think of myself as a confident person and am proud of who I am, but sometimes it is tough not to get down about things when my non-disabled peers are having experiences in their lives which would take a huge amount of planning for me. The example I am thinking of is that I have a good friend who is heading to Europe on a 2-year working holiday next week and I am just feeling a bit down at the thought that I couldn't do the same. I am sure that I will make it to Europe in the near future, but unlike her, it will take a huge amount of planning and will likely have to be in the short-term, unless for example, I somehow was able to study there. This example may seem frivolous compared to what you are all talking about but I just wanted to highlight that it isnot just parents who feel this way sometimes, despite having a significant amount of pride in identifying as disabled.

    Since May 2013 • 6 posts Report Reply

  • Martin, in reply to Erin,

    First , thanks to Hilary for the post in the first place; you have written eloquently about a very difficult topic which we in the disability world generally steer away from for fear of been seen as weak, poor-meish and so on. So thanks to you Erin for broaching the subject of grief we disabled people experience intermittently in such an upfront way (Water Dragon & Sacha have done so earlier, but more subtly).

    I think the twists and turns this thread has taken is very interesting. It began with direct responses to Hilary focusing on what she said about chronic sorrow and then morphing into a discussion about crap DSS which are a contributing factor. So the discussion has moved from the psycho-emotional dimension of disability and impairment effects (Thomas 1999)* to disability itself. So thank you Erin for bringing us back to topic.

    I can understand how a parent would have bouts of chronic sorrow for all her/his child is missing out on and the struggles s/he faces get (often) inadequate services. But i would classify my own situation as having moments of deep "pissoffedness" when, on occasions, its seems just so bloody hard living with the impairment effects of SCI.

    *Thomas, C. (1999) Female Forms. Experiencing and Understanding Disability. Buckingham: Open University Press.

    Palmerston North • Since Mar 2015 • 25 posts Report Reply

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