Access by Various artists

Read Post

Access: Social media, disability activism and community inclusion

169 Responses

First ←Older Page 1 3 4 5 6 7 Newer→ Last

  • Marc C, in reply to Sacha,

    Maybe not so "Godwin" after all? Of course I stretched it a bit, with some comments further above, but good observers can detect stuff that goes on, that should get us very, very worried about the future of our democracy. A Herald editorial being changed as mentioned that is indeed just more evidence, I think. Also take note of other things, such as much printed and published and reported now being sponsored by vested business interests, who are of course favoured very much under this present government. Where will it end?

    Akl • Since Oct 2012 • 437 posts Report Reply

  • Hilary Stace,

    Giovanni and I wrote a bit about special education in this publication. http://ips.ac.nz/publications/publications/show/366

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    wrote a bit

    No you didn't!

    The set of perverse incentives we
    have described emanates from a system
    that is almost pathologically obsessed
    with costly verification, placing little or
    no trust in educators and families. Under
    this regime, it is not probative to say that
    our levels of expenditure are relatively
    high by international standards when so
    much money is going towards guarding
    access to resources, as opposed to enabling
    inclusion.

    A few days ago Hilary you were talking about retirement....after the work that has clearly gone into this 'bit of' writing, the coordination involved with the articles in MSM and the select committee hearings...I think you can at least take a few days.

    It must be soul destroying to look back and see that for all the talk, all the happy clappy press releases, all the submission writing and the report writing, all the surveys done by various government departments and NGOs....nothing has actually improved.

    Lots of changes, which we all have to adapt to...but no real improvement.

    No security of access and support.

    Like this young fellow...http://m.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11546513

    Your work is appreciated Hilary and Giovanni...

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

  • Rosemary McDonald,

    And this wee lass...

    http://www.nzherald.co.nz/lifestyle/news/article.cfm?c_id=6&objectid=11546668

    "Does autism make me bad?" ....seven year old.

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

  • Hilary Stace,

    Thank you Rosemary. I am going to a meeting about education stuff tomorrow and these are useful stories to take with me. We need inclusion for all, not just the easy kids. (And Giovanni wrote most of the article. I mainly found the references)

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    (And Giovanni wrote most of the article. I mainly found the references)

    There have been a few Journal articles born in our family. I have a fairly good understanding of the attention required to produce such a piece...and the timing is exquisite. Well done both of you.

    If Giovanni was the principal writer...he has most certainly captured the level of frustration within the community, without going full core ranty. (as perhaps the less disciplined of us might have done ;-))

    Perhaps, with this, and the submissions to the select committee, the sheer volume of submitters....there may be a possibility of improvement?

    Plug the time($$$) wasted in the bureaucratic process...appeal to their innate parsimony. Good luck!

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

  • Hilary Stace,

    This deserves its own post, but not for me to do. I'm just another problem bipedal. But us bipedal humans should be aware of the problems we cause to those humans who aren't. http://badcripple.blogspot.com.au/2015/10/on-space-and-discrimination.html

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald,

    Attention all clients of Ministry of Health Disability Support Services

    (This too needs it's own post, but I haven't the time at the moment...so here goes...)

    Disabled people living in their own homes who have been able to have a family member as their paid caregiver (including spouses) are being told that these "arrangements" are being terminated as of the 31st March 2016. (these are not people under Funded Family Care.)

    Those eligible for Funded Family Care (not spouses) will need to apply for this funding if they wish to continue being cared for by family.

    This will involve a new Support Needs Assessment.

    It would appear that these assessments will restrict the number of hours of support to 40 hours per week, regardless of what the Support Needs Level of the person is or how many hours they are being funded for at present.

    There may, or may not, be the option of having extra hours (over and above the maximum of forty hours per week on FFC) funded through Individualised Funding.

    It will most likely be the case that you could be assessed as needing 60 hours of support per week to meet your core needs, but you will be offered only forty or less.

    It is very, very difficult to find out exactly what your SNL is, or how many hours the "independent assessor" sent by your NASC has recommended.

    My advice (FWIW) is for MOH:DSS clients to request a copy of their complete records from their NASC. Find and collate any and all letters and documents that you have been sent over the years.

    Make sure you have a record of previous assessments, hours funded for care and any document that supports a higher allocation of support hours.

    Speak with your networks...spread the word.

    My theory, for what it is worth, is that MOH:DSS clients who are living as part of a family are going to have their funded supports pared back in order to fund other areas of Ministry of Health's responsibility...perhaps elder care.

    I will close by drawing attention again to the opening paragraph of the Part 4 amendment to the Public Health and Disability Act 2013.

    “70APurpose of this Part
    “(1)The purpose of this Part is to keep the funding of support services provided by persons to their family members within sustainable limits in order to give effect to the restraint imposed by section 3(2) and to affirm the principle that, in the context of the funding of support services, families generally have primary responsibility for the well-being of their family members.

    http://www.legislation.govt.nz/act/public/2013/0022/latest/whole.html

    Anyone from the Government or Ministry of Health, Disability Support Services who wishes to make a statement or to tell me I am reading this wrongly, please do.

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

  • Angela Hart, in reply to Rosemary McDonald,

    It is very, very difficult to find out exactly what your SNL is, or how many hours the “independent assessor” sent by your NASC has recommended.

    It is. Very difficult. And yet this information is one of the three core tasks of the NASCS (1 Assess 2 co-ordinate 3 budget). You'd think this information would be automatically communicated to clients.
    The only place I've seen which states that it should be is para 13.2 of the funded family care policy

    The amount of unpaid disability supports provided to a disabled person will be recorded in their support plan along with the planned paid supports.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald,

    Another bit of advice when being forced to deal with a NASC is to either insist that all communication is done via email, or even record the conversation if on a phone call.

    They appear to keep notes on the call they make to you...but not the calls you make to them

    And not the calls where you (as the 24/7 carer of someone with a very high SNL) tell them you are sick and are too scared to go to the doctor because you know a visit to hospital will be the result. "Who is going to provide the care he needs?"

    Or, five years later when the dreaded visit to the doctor can no longer be put off (and he sends you straight to A&E) and you have major surgery booked within the week...and apart from a few hours per day the primary carer will be a recent school leaver. You distinctly remember saying to the coordinator that 'if I die on the table...you guys are going to have to step up and organise some long term care'.

    No record of these conversations. No quick phone call while I was in hospital to check that Peter was being properly supported in my absence. No offer of any home help or support while I was recovering from major abdominal surgery. Bearing in mind the support carer we had hired refused to do any transfers.

    Going through nearly twenty years of documentation we got from our NASC the other day, after an official request, has been a very sobering experience.

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

  • Angela Hart, in reply to Rosemary McDonald,

    No record of these conversations. No quick phone call while I was in hospital to check that Peter was being properly supported in my absence. No offer of any home help or support while I was recovering from major abdominal surgery. Bearing in mind the support carer we had hired refused to do any transfers.

    All reinforces my slowly acquired learning that my NASC is not primarily concerned with assessing and co-ordinating necessary disability support. Its primary function is to control MOH disability expenditure. Its ostensible role as an assessment agency would be laughable if the consequences of its actions and inactions were not so bloody awful.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Angela Hart,

    Its primary function is to control MOH disability expenditure.

    Rationers. If they were assessed on actual results achieved per dollar, they aren't even very good at that.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    If they were assessed on actual results achieved per dollar,

    Very good point.

    Has this been done?

    Does anyone know if the NASCs' funding is per client, per client depending on SNL, per refferral to a Service provider, per $$$ amount of client's support package (i.e. actually accessed not just allocated)???

    What are their KPIs?

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

  • Sacha, in reply to Rosemary McDonald,

    Asking those questions implies that quality matters for disabled people, and that we deserve effective and efficient service. An OIA to the Misery would probably tell us what we already know on that score.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald,

    Arrgh!!

    http://i.stuff.co.nz/national/health/74568734/Disabled-people-find-public-transport-in-Wellington-and-Auckland-too-hard-to-use

    There have been some very fine and able people on the case for access...including Gerry and Roger featured in this article...but the situation does not seem to improve.

    I thought we had Laws?

    Rights?

    A Convention FFS!

    Gerri Pomeroy finds using public transport in a wheelchair so stressful sometimes that she does a "trial run" the day before to make sure she will be able to get safely from A to B.

    Ditto.

    The CCS survey also found a common complaint was taxi drivers breaking the law by not collecting disabled people with guide dogs, or overcharging blind people because they can't see the meter, she said.

    Roger Loveless agreed things needed to change, pointing out that even disabled people with access to a car did not have it easy.

    Just the other day he was "blocked in" a hospital car park because someone parked next to his car and prevented him from using his side ramp.

    ...and we got a $21 parking ticket on a deserted side street in Hamilton on Sunday because (we think) the Parking Person failed to see the Permit on the dash.

    Even exercising your right to participate in an organised protest action can be problematic.

    We sometimes stand our ground...make a bit of a fuss...like NO Mobility Parking at the NASC the other day...but it is really a waste of time.

    They want disabled people to stay home and be invisible.

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

  • Hilary Stace,

    I have just noticed this big restructure to the Ministry of Youth Development. Real people will lose their jobs and instead business and philanthropy will be expected to fund and support young people, particularly the most at risk and marginalised. As if there are millions of philanthropic dollars just floating around and businesses keen to help. We’ve often heard this strategy in the disability sector but NZ just too small and this wonderful resource just does not exist. So extra bad news for young disabled people. http://www.msd.govt.nz/about-msd-and-our-work/newsroom/media-releases/2015/changes-to-myd.html

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald,

    Article on stuff....http://i.stuff.co.nz/life-style/well-good/74617749/Reddit-lights-up-with-insights-from-people-struggling-with-mental-illness

    about a comment on reddit about mental illness that led to over 7000 further comments...this is treasure.

    https://www.reddit.com/r/AskReddit/comments/3ukp0f/serious_psychiatristspsychologists_of_reddit_what/

    "Child with autism who was struggling with her difficulty making and keeping friends: "It's okay if I don't have any friends. Having friends makes you happy but it doesn't make you a good person. You know who was really popular? Hitler."

    and

    "What screws us up most is the picture in our head of how things SHOULD be." – Cooopz​ "

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

  • Rosemary McDonald,

    http://i.stuff.co.nz/world/americas/74698735/California-shooting-Disability-centre-no-threat-to-anybody

    The agency and its nearly 700 employees serve as a hub, connecting clients - who range in age from infants to senior citizens - with services they need in order to be more included in the community and live more independent lives.

    It is one of 21 regional centres run by nonprofits across California. According to the California Department of Developmental Services, the centres provide a range of services for individuals with disabilities and their families, including counselling and genetic counselling, family support, assessment and diagnosis, referrals to other agencies, early intervention for at-risk infants, training and education, legal and civil rights advocacy, and help connecting with community resources.

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

  • Rosemary McDonald,

    I see that conditions and care for the clients of Te Roopu Taurima have improved

    not

    http://www.health.govt.nz/our-work/disability-services/contracting-disability-support-services/auditing-disability-service-providers/developmental-evaluation-disability-support-services

    .

    There have been 30 staff dismissals since January 2015, with five more pending. Some dismissed staff have sabotaged Te Roopu,

    Lapses in Health and safety, infection control and general cleanliness of the houses was also a common theme. Health and Safety meetings have not been consistently held and Health and Safety Checklists had not been completed in some houses. Hazard and incident reporting did not follow a consistent process.

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

  • Angela Hart,

    On the plus side, there are success stories, usually less to do with the state and more to do with the whanau
    http://www.stuff.co.nz/life-style/well-good/inspire-me/74743244/disabled-man-pens-heartwarming-letter-thanking-his-mother-for-giving-him-life

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Yep....

    and that is worth a million times more than any award handed out amidst glitz and glamour...

    Funny how that goes....

    (Alex's story mirrors the one of friends of mine....only their story began nearly fifty years ago.)

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

  • Ian Dalziel,

    Might be of interest - from the weekly Council email - an opportunity to become part of a solution? if you are fast closes in 2 days:
    Community Notices
    Applications are invited for the Christchurch City Council's Disability Advisory Group
    The Council's Disability Advisory Group (DAG) provides a forum for people within the disability sector to participate in the planning of Council services, projects, and activities; in order to ensure that the needs of the wider disability community are taken into account.
    The DAG has been operating for ten years, meets monthly, and provides lived experience and inclusive community advice to the Council.
    Following a refresh of the group's aims, we are seeking new members.
    If this opportunity sounds like you, you can apply by sending a covering letter and a brief CV outlining your relevant experience. Please include a letter of support from within the disability sector.

    Applications close on Thursday 17th December 2015.

    Interviews will take place in January 2016.

    Information about the DAG, and what is required from members of the DAG, is available on the Council's website, by searching: Disability Advisory Group. To discuss the role of a DAG member, or to have further information sent to you, please contact Gail Payne.

    Please email or post your application to:
    Christchurch City Council

    Gail Payne
    Metropolitan Community Advisor; Disability and Older Persons
    Community Governance & Support Unit
    PO Box 73016, Christchurch 8154
    Phone 03 941 8051
    or email gail.payne@ccc.govt.nz


    The Earthquake Disability Leadership Group (EDLG) is holding community conversations 'What's our new story - 5 years on'? Details of the conversations are available at: http://www.newzealanders.org/edlg

    Christchurch • Since Dec 2006 • 7892 posts Report Reply

  • Hilary Stace,

    Sharing some more disability activism around social media. Giovanni's post on the select committee inquiry
    http://bat-bean-beam.blogspot.co.nz/2015/12/our-day-at-parliament.html

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Sharing some more disability activism around social media

    And why not?

    Just got off the phone from the Office for Disability Issues asking why the latest incarnation of the Disability Action Plan contains no reference to Funded Family Care or the Part 4 amendment to the Public Health and Disability Act 2013.

    Silly me...I just don't seem to understand what the role of the ODI is.

    http://www.odi.govt.nz/what-we-do/ministerial-committee-on-disability-issues/disability-action-plan/2014-2018/update-2015/index.html

    The Office for Disability Issues was established in July 2002 to provide dedicated support to the Minister for Disability Issues.

    I drew the person's attention to the Post made here on PA a year ago about Funded Family Care.
    The post that was mentioned in the IHC Newsletter, who thought it relevant to highlight the fact that..

    In another post on the same Public Address Access disability blog, a carer who is eligible for payment describes his/her experience. But s/he has chosen to remain anonymous in case of repercussions. In the comments section the disabled adult who is now the employer of the parent carer, under the scheme, describes the experience and why they have both chosen not to reveal their identities because of fear of future cut backs to the support they receive...

    Bold mine.

    http://www.ihc.org.nz/hot-issues/ihc-hot-issues-january-2015/

    Now, I don't know about anyone else...but I think it is pretty shit that in 2015 disabled New Zealanders with very high support needs and their chosen family carers are frightened to speak out because they fear a backlash from the Misery of Health Disability Support Services (joke) or the Government.

    PLODS, the lot of 'em.

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

  • Angela Hart, in reply to Rosemary McDonald,

    Along with many others I sometimes have trouble remaining positive and hopeful of genuine positive change. Do you think it's worth getting involved? http://www.odi.govt.nz/nzds/2016-revision/reference-group/index.html#Nominationform2

    The view from outside of these departments and advisory groups seems to show a system which sidelines those with expertise and passion; when they are involved with officialdom their hard work generates no practical result. They're not allowed to speak out about the workings of the group, often, it seems to me, they are appointed to be muzzled and hamstrung.

    I'd like to be wrong.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

First ←Older Page 1 3 4 5 6 7 Newer→ Last

Post your response…

Please sign in using your Public Address credentials…

Login

You may also create an account or retrieve your password.