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Access: Disability as a wicked policy problem

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  • walrus, in reply to Angela Hart,

    There was also the problem that an academically able disabled child was funded to remain in high school to age 21 but could not access government funded support to go to University until they were , I think, 18.

    It was worse than that. The funding only moved with you to university if you'd done your full stretch at school. Three extra years. The length of a BA. Remember Ryan Leitch?

    Auckland • Since Jan 2015 • 13 posts Report Reply

  • Hilary Stace,

    There is so much wrong with how NZ is doing policy on education at the moment.

    It's a bit like grabbing at ideas (many with an underlying principle of privatisation) and seeing how they fly. Fortunately, there is a lively informed social media network which can quickly analyse and spot the shortcomings eg in this article about the Tiso family (which isn't the full picture but all you can fit into a mainstream media article.
    http://www.stuff.co.nz/national/education/83481426/fears-daughter-will-miss-out-twice-in-change-to-special-education-funding

    Meanwhile one of my favourite autism bloggers has recently become active again and points to the problems with a system which relies on low status SENCOs and teacher aides.
    https://autismandoughtisms.wordpress.com/2016/08/23/teacher-aides-and-sencos-in-new-zealand-schools-symptoms-of-a-broken-system/

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Rosemary McDonald,

    The Ministry of Health has posted a Request for Information- Independent evaluation of funded disability supports and services.

    Overview
    The Ministry of Health conducts regular evaluations of the disability supports and services we fund.

    We are interested in receiving information about how we can expand our evaluation teams and improve this service.

    In particular, we are looking to:
    • Identify organisations or individuals who may be interested in delivering these services, understand their experience and capability, understand any barriers to their participation;
    • Identify support that can be provided to enable disabled people with personal experience of disability support services or experience as a disabled person’s family/whānau member to be part of an evaluation team;
    • Identify what type of support could be provided by the Ministry to interested parties to work together to build new evaluation teams;
    • Understand any quality improvements that we should consider to enhance evaluation quality and consistency such as review, oversight, internal or external monitoring processes or third party accreditation;
    • Understand any other matter that is relevant to evaluation services.


    Responses are due back to us by midday 16 September 2016.

    There may be an opportunity for some input from those with lived experience of disability here….

    …..if only they’d actually listen.

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

  • Angela Hart,

    The MoH has just posted the review commissioned for DSS on Disability Information and Advisory Services and Needs Assessment and Service Co-ordination Agencies which was completed last year.

    http://www.health.govt.nz/publication/disability-information-and-advisory-services-and-needs-assessment-and-service-coordination-review

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace, in reply to Angela Hart,

    Thanks Angela

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Rosemary McDonald,

    Press release!!!

    Disability Issues and Associate Health Minister Nicky Wagner today announced the group responsible for designing the new disability support system. (YAY!!!)

    “The co-design process is an exciting opportunity for leaders in the disability sector to work in partnership with government to transform the disability support system,” Ms Wagner says.

    The members of the co-design group are Jade Farrar, Shane McInroe, Gerri Pomeroy, Helena Tuteao, Esther Woodbury, Lawrence Chok, Tina Lincoln, David Matthews and John Taylor.

    “The current system doesn’t work well for all disabled people, (no shit, Sherlock) so there’s a great deal riding on this co-design phase — it’s a once in a lifetime opportunity to provide better support and better services for disabled people and their families. We need to get it right,” Ms Wagner says.

    Forgive me (or not, I no longer care) if I am more than slightly cynical of this latest attempt to "get it right".

    One of those on this co - design group was the cause of Peter flatly refusing to participate in the second round of consultation workshops on the new Disability Strategy.

    This person completely dismissed our concerns about the Part 4 amendment to the PHDAct(2013) and it's wider ramifications regarding the denial of entitlement to funded supports.

    Yes, this person lives with disability, but requires little in the way of hands on support. This person also is supported by ACC, which gives those eligible entitlement.

    This person will have not a single clue of what life has been like for Peter for the past 46 plus years.

    This person dismissed Peter when he spoke at the first Disability Strategy meeting about how he has never felt so insecure or vulnerable with regards to access to funded supports and the right to chose who provides those supports. That he has never felt so afraid that some petty power- craved bureaucrat will arbitrarily decide that he no longer has the right to live where he chooses with the support that he needs should anything happen to me.

    This person will probably presume to speak on behalf of those like Peter who require a very high level of hands-on support...which is wrong.

    SSDD.

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

  • Hilary Stace, in reply to Rosemary McDonald,

    I know a couple of good people on this group but does anyone really expect there is going to be any boat rocking at this stage of the electoral cycle and with this minister?

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Angela Hart,

    There are some very good people on this group. But does anyone still think that even if by some miracle the group gets it right, the government will do it right?

    I would dearly love to put the scales back on my eyes and go back to the comforting naivety I used to possess.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    ...but does anyone really expect there is going to be any boat rocking at this stage of the electoral cycle and with this minister?

    Hell yes.

    The stage of the electoral cycle and/or the current Minister should have no bearing on the work of this group.

    I am not a fool...I understand the influences...but I am over precious 'resources' being wasted on yet another sham consultation.

    This is being touted as the definitive review... transformational...and there are updates!!!

    And an invitation to send feedback...

    There is a desperate need for dedicated boat rockers in these groups...but of course there's a snowball's chance of anyone like that getting within cooee.

    Nah. This lot will do their thing and make the right noises and receive their gong from the honours list and those disabled New Zealanders who are highly dependent on the support of others shall remain in their current state of extreme vulnerability and insecurity.

    And the co-design group won't give a toss.

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

  • Hilary Stace, in reply to Rosemary McDonald,

    I meant the boat rocking won't come from within the system from a group of handpicked people asked to do a huge task in an impossibly short time. It has to come from all of us and this is the best time to do it just before an election.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    How do we do this Hilary?

    The system is set up so only those chosen to speak on behalf of us have a say.

    They (this co design group) will claim that they will listen....but Peter and I know from our interaction with one of the members at the Strategy workshop that this simply did not happen.

    What caused me most dismay was this person completely and utterly discounting the concerns of someone with very high support needs who put aside his natural inclination to stay in the background and tried to speak out for those with comparable vulnerability for whom communication and even participation are difficult if not impossible.

    This was one disabled person in a position of power suppressing another disabled person with no power and no voice.

    How do we counteract that?

    Just over a year ago Peter obtained a copy of his NASC file. It was ridden with inaccuracies and omissions and in one particular series of documents, statements were made by MOH and NASC staff that were provably false and pointed to at least gross incompetence, if not an actual attempt to create a false impression.

    The current Manager of our NASC, after much correspondence on the issue and intervention by an H&D advocate, flatly refused to address these issues.
    Flatly...and didn't bat an eyelid when Peter called him a liar to his face.

    We could make a complaint to the Privacy Commission and attempt to have the record amended...but who has the time?

    I could (while we are temporarily housebound and have 24/7 internet and 240V access ) write another post for PA...along the lines of "NASC- Not Working For Us"
    and see if anyone reads and responds....but there seems to be a real reluctance for others to join the conversation.

    I am told that some are frightened that they will draw the attention of the Misery of Health and jeopardise the funded supports they struggled to 'secure'.

    They are bastards, really, for creating this environment.

    Pushing aside my bitterness Hilary, what do you suggest we do?

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

  • Angela Hart, in reply to Rosemary McDonald,

    The campaign Hilary was part of, to improve conditions for Ashley, appears to have succeeded, fingers crossed. We need a planned campaign that we can actually implement with our combined but still meagre resources.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha,

    3000 of Idea's support workers 'strike' for one hour on Thursday morning.

    Ak • Since May 2008 • 19680 posts Report Reply

  • Hilary Stace, in reply to Angela Hart,

    Will believe it when I see it, Angela. Some small positive moves all I've seen so far. Good start but not enough to overturn 15 years of injustice.

    In the meantime, Rosemary, I suggest we all do what we can within the energy and opportunities we have. For example, I was canvassed by a National MP today so I told them about disability rights. So it might be a new category on someone's issues list when it wasn't before.

    I am also making sure every disabled person I come across over 18 is on the roll and is going to vote. The US, as usual is leading the way. The Austistic Self Advocacy Network is encouraging their members to participate in democracy and has provided a kit called They work for us. https://autisticadvocacy.org/wp-content/uploads/2017/02/They-Work-For-Us-A-Self-Advocates-Guide-to-Getting-Through-to-your-Elected-Officials.pdf

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Rosemary McDonald,

    I'm wondering why Disability does not warrant a Minister inside Cabinet?

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

  • Hilary Stace, in reply to Rosemary McDonald,

    Because it is seen as something of marginal interest and priority for Government. They don't realise that 24% of the population identify as disabled and then there are all the family members and carers too, and a lot of them vote.

    That's one reason everybody should be going to their local MP and educating them about the issues and asking them to use their political influence to improve support and services. However, I have heard that some local MPs, particularly National Party ones in provincial areas,, are very hard to actually get a constituency appointment with.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Angela Hart,

    The difficulty of seeing your MP is probably true. I'm in West Auckland and when I made an appointment to see my MP, Paula Bennett at that time, the person I actually saw was her employee. I never spoke with her direct. The effectiveness of face to face interaction and potential to increase her visceral understanding was lost.
    To be fair, I was subsequently invited to a morning tea event with Paula, but had to decline because of my daughter's health and disability needs.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace, in reply to Angela Hart,

    One to one meetings require interaction (and media, cameras etc). A group tells lots of people how good the MP is to invite carefully vetted disabled people to her morning tea, but does not require any other interaction between the MP and the disabled person. My friend who has a disabled adult daughter says the same thing. They are occasionally invited to National Party events but can never get an opportunity to actually talk to the MP privately.

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Angela Hart, in reply to Hilary Stace,

    can never get an opportunity to actually talk to the MP privately.

    which I once thought was a right of citizenship, so that your local MP can actually represent you and possibly help with intractable problems you are experiencing

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald,

    Prior to the passing of the 2013 amendment to the PHDAct Peter and I arranged a face to face meeting with our local MP in his office in Te Awamutu. (We were still clinging to the last vestiges of hope that this kind of engagement might be of some use.)

    The office was on a slope with an insurmountable number of steps to the main entrance. (Probably negotiable via tractor.)

    We were directed to the rear entrance and had to wait our turn in a grotty wee storage area.

    Not an auspicious start....and Our Representative proceeded to deflect our issues by launching into a tale of how he successfully lobbied on behalf of his electoral worker and her family for 'justice' regarding an incident involving her brother.

    Time's up. So sorry. Now fuck off.

    We have also taken the opportunity to pop into the Former Leader's electoral office as we pass by on the way north along SH16.

    Goodness me. The way the staff speak...who knew that he, sorry, He was such a paragon of warmth and saintly benevolence and magnanimity?

    You're asking a lot Hilary....endeavoring to engage with that lot and attemping to raise their consciousnesses...but we will commit a proportion of our remaining energy on this Sisyphean task.

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

  • Rosemary McDonald,

    Nicky Wagner on Natrad tonight in response to an interview with a Marton couple struggling to cope with their son....

    It's late(early?), but I'm sure that the Minister said that 5 billion dollars was being spent on disability supports...but that doesn't seem to fit with the Budget..

    There is just over 1 billion for DSS and a total of 11 billion over all the DHBs for 'health and disability supports'.

    Then there's the $370 million through MSD for Disability Supports...and I still can't reach the $5 billion the Minister claims is spent...

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

  • Sacha, in reply to Rosemary McDonald,

    The total disability-related spend (not just support services) across all of govt is over $4b each year which is another reason people should be concerned about the quality of its management. Wagner seems poorly-informed about the portfolio in general and her pompous tone in that interview really angered me. What is she like to deal with?

    Ak • Since May 2008 • 19680 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    and her pompous tone in that interview really angered me.

    I thought it was just me....

    When I have the time I will do a breakdown of at least the DSS spend in all areas. Be interesting to quantify the $$$ spent on blocking access to funding to the 'person'...and identifying the snouts in the trough.

    What struck me about that interview was her saying that they fund organisations to support those trying to manage life with various impairments....as if that has ever been money well spent.

    To them the $$$ would be an investment...especially if the recipients do nothing in the way of actual advocacy.

    Hopefully there will be disability focused pre-election gatherings which the Minister will attend and we can test her mettle.

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

  • Hilary Stace, in reply to Sacha,

    I have heard the Minister speak several times now and she has an unfortunate patronising style. As a disabled person said, it feels like she is patting you on the head and saying, "you are doing so well". And she will mention how many hundreds of disabled people she has personally got into employment in Christchurch (but no details about who, where and how).

    Wgtn • Since Jun 2008 • 3196 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Be interesting to quantify the $$$ spent on blocking access to funding to the 'person'...and identifying the snouts in the trough.

    I've long thought that just providing what people ask for would be cheaper than saying no.

    Ak • Since May 2008 • 19680 posts Report Reply

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