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Access: Some aspects of New Zealand’s disability history – part four

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  • Angela Hart, in reply to Hilary Stace,

    In Australia long term detention without an open hearing happens regularly with Aborigines and Torres Straits Islanders, that is, the bias is racial. I am disgusted that something similar is happening here and that in this case it seems the worst offence was damage to property. For this the young man has already served 10 years and there is no end in sight. Justice? Fairness? Or simply an easy fix which does nothing to help the individual. He has done well just to survive thus far.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Sacha, you clearly have a greater grasp of the nuances of statistics....help me out here.

    I'm finally having a look at the.... http://www.health.govt.nz/system/files/documents/publications/demographic-information-on-clients-using-ministry-dss-september13-apr15.pdf....

    page 31, table 24

    and , of course, I'm looking for "64 year old male in a opposite sex partnership, allocated Carer Support".

    Whoops....there's Peter....the ONLY one in that group. Really?

    And, my interpretation is that about two thirds of DSS clients have not declared their marital status....despite the fact that spouses and partners are considered :natural supports" and have to be declared.

    And......any ideas what "response outside scope" might indicate?

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

  • Sacha, in reply to Rosemary McDonald,

    Seems they haven't been collecting good data about relationships. I'd expect 'out of scope' means an answer that doesn't relate to the topic (eg: turnip).

    They really should not be reporting categories with less than 3 people. Too easy to identify who they are talking about, as you did.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Angela Hart,

    Another form of imprisonment? Arising from the fact that the Ministry of Health will not fund support (except in exceptional cases determined only by itself) beyond the cost of residential care. ACC will.
    http://www.stuff.co.nz/dominion-post/news/67925111/disabled-dumped-in-rest-homes

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Angela Hart,

    Yes, 'all other options have been exhausted' - except funding enough care in her home or doing more than rely on a broken housing market to provide enough properly-accessible homes. Disabled younger adults rotting in elderly residential facilities has been a problem for many many years. Just not pressing enough for anyone with power to solve it.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Angela Hart, in reply to Sacha,

    She's been sucked into the situation through getting pressure sores. Otherwise perhaps the family might have considered moving house to be closer to such services as the Misery through its servant the NASC might deem appropriate. Unfortunately most of those in the health system who are at risk of pressure sores only discover their risk when they get them. People at risk through accident (spinal injuries) are educated about them and trained in avoidance.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Hilary Stace,

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Sacha....hear that evil cackle from the vicinity of the Swamplands?

    That's moi.

    Thinking of the at least 1/2 dozen other Miserly of Health: Disability Support Services clients of our acquaintance who are also living in blissfull sin with their opposite sex partner.

    Guess they knew not to fess up...

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

  • Rosemary McDonald, in reply to Angela Hart,

    A pity (but not unusual) her marriage broke down. Makes me wonder about matrimonial property etc....perhaps a lawyer is needed to ensure that her rights regarding assets are protected? Very difficult situation, and more info needed....ie. was she still in the family home prior to the fossil factory? Has she and her ex got joint custody of the children or have her parental rights been diluted because of her disability?

    Surely this is work that the MS Society should be doing....sorting this shit out?

    PS...the spinal injured might be trained in pressure area prevention, but the spinal units are still having to fix em up.

    My heart goes out to this woman, and how very different her situation is to the slightly older lady with advanced MS we visited the other day. Lives in a remote location with her devoted husband and fifteen hours of funded care per week plus regular visits from district nurses.

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

  • Sacha, in reply to Rosemary McDonald,

    Surely this is work that the MS Society should be doing....sorting this shit out?

    and at a policy advocacy level, what have the main DPOs been doing for the last decade on this?

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    and at a policy advocacy level, what have the main DPOs been doing for the last decade on this?

    Paying lip service, and serving their paymasters.

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

  • Angela Hart, in reply to Hilary Stace,

    MSD is reviewing children in aged care - but not younger adults

    Surely they're not in aged care but housed with families not their own, foster care or youth facilities?

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

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

  • Christine Peet, in reply to Rosemary McDonald,

    Thinking of the at least 1/2 dozen other Miserly of Health: Disability Support Services clients of our acquaintance who are also living in blissfull sin with their opposite sex partner.

    Guess they knew not to fess up…

    I'm curious to know what you mean by this Rosemary?

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Rosemary McDonald, in reply to Christine Peet,

    Well, Christine....for the past eight years Peter (my tetraplegic partner who has chosen me as his carer) and I have been trying to figure out how so many others in our situation (disabled person and unpaid carer spouse/partner) have managed to enjoy the considerable financial advantage of being able to secure MOH:DSS funding for the disabled partner/spouses care.

    When the 'rules' from day one of the Miserly's reign have been that a) NO supports (other than Carer Support Subsidy) will be put in place until "natural supports" are exhausted.

    and b) under no circumstances can spouses/partners (or even ex spouses /partners) are to be paid for the care they provide.

    We went out seeking others in our situation and found (to our understandable pissed offness) that rule b was completely arbitrary. Many, many spouses/partners WERE being paid as carers for their loved one. We met another one just the other day.

    So....how did these couples get to enjoy such bounty?

    Methinks, they simply failed to fill in the blanks on the assessment form....they lied.

    Or a Contracted Provider arranged for the spouse/partner to be paid and advised the couple to avoid answering that question.

    All of these arrangements must have involved some level of deceit.

    Something Peter and I were not prepared to do....which is why we supported the Family Carers case, and made our own complaint to the HRC in 2008.

    56 people complained to the HRC....(not the 30,000 that the MOH claimed would be demanding to be paid if they lost.)

    Out of those 56 complaints to the HRC....only 3 are left as active as the new legislation will allow.( Section 70E of the PHDAct(2))

    Our complaint is one of those.

    Happy to clarify if this is a bit garbled!

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

  • Christine Peet, in reply to Rosemary McDonald,

    Thanks

    New Zealand • Since May 2014 • 28 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Does 'active complaint' mean you are still wating for a response?

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Sacha,

    Well, its been a long and somewhat tortuous process beginning with the intial response from the HRC back in 2008 of " the outcome of Atkinson will apply to your situation so we wont add you to the plaintiffs", to the most recent "wait until the outcome of the Spencer appeal."

    In the meantime there has (as you might imagine) been a deluge of correspondence and supporting documentation and a number of seemingly random phonecalls involving a fair amount of questions.

    From what we can deduce from the information we had to provide and specific lines of questioning we are amongst the last complainants standing because
    1) Peter has been through (any number of) NASC assessments and has been assessed as very high needs, and,
    2) he has had no hours of funded care for over 16 years...even though he met all the eligiability requirements,
    3) There are/were no MOH (as opposed to ACC) - contracted providers in our area who were able to provide carers....even if (and when) he needed them.

    When MOH took over disability supports they changed the rules on what contracted carers were allowed to do. The type of care required by someone with a high spinal cord injury fell outside of what they were allowed to do ... without going into gory detail.

    The alternative to me being Peter's carer was residential care ... not an option.

    At one stage we asked the leading ACC spinal cord injury provider if they would be willing to (if needed) provide carers for Peter. No go, as "the Ministry of Health are too difficult to work with."

    So ... if the Spencer Appeal fails (and the original decision stands, which to be brief (hah!) said that those of us with an interest in the outcome of Atkinson should have been consulted in the decision to suspend the original "thou shalt not discriminate " decision from the HRRT, there might be a bid to get a bit of legal attention to our complaint.

    Or it will go to the Supreme Court and we'll all be dust by the time its done.

    Confused?

    You bet.

    To be honest, we have kind of given up on any hope of justice for us in this matter...but one day, perhaps, a little bit of the truth will out.

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

  • Angela Hart, in reply to Rosemary McDonald,

    Informal discussions with staff from MOH and CYF indicate that children are entering care under section 142 care agreements so that they can be placed in adult residential placements, because of a lack of placement options in the community.

    That is disgusting, I am horrified. There is no way in the world that rest home type facilities can adequately meet the needs of children, especially those with a disability. This is totally wrong.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    If we were in the USA, just imagine the lawsuit.

    Ak • Since May 2008 • 19688 posts Report Reply

  • Sacha, in reply to Rosemary McDonald,

    Or it will go to the Supreme Court and we'll all be dust by the time its done.

    given how thoroughly stupefied the 'oppostition' have been, that seems a reasonable expectation. #ashtoashes

    Ak • Since May 2008 • 19688 posts Report Reply

  • Rosemary McDonald, in reply to Angela Hart,

    Not all disabled children are blessed with family who are able and willing to provide the care and support needed to keep them safe and healthy and reaching their potential.

    The disabled children in foster care of my acquaintance were lucky enough to be placed in care early ( before lasting damage from innappropriate care was done), with foster parents with the right skills and resources to provide the necessary support.

    However...all was not made easy for these saints.

    The authorities were, at times, way less than supportive...and at times openly hostile when they felt the foster parents were making unreasonable demands or setting unreasonable conditions. The only thing that stopped them dropping the children off at the CYFs office was that they loved them.

    We provided much deserved respite care for some of these high needs children....but familes like ours are also few and far between. We also provided foster care for non disabled children for CYFs...and to be perfectly honest...CYFs struggled to meet the needs of those kids, never mind those children whose needs were much higher. We found CYFs very difficult to deal with...some social workers seemed to have no idea how easily affected children are to certain circumstances...

    So, foster families capable and willing to commit long term to disabled children being thin on the ground and support from CYF and MOH being hard to access its no wonder that these kids end up in 'rest homes'.

    We often used to discuss this topic....and decided that small but well staffed children only care homes were needed. Not huge institutions with bars on the windows, but homely (but professionally run) places where kids could be placed for the long term.

    Somewhere there is a document outlining discussions with various groups on this issue and I was surprised that sworn adversaries were happy to share the table in a bid to thrash out a workable solution.

    I think even the UN Monitoring Committee mentioned it.

    http://www.ombudsman.parliament.nz/ckeditor_assets/attachments/327/uncrpd_committee_concluding_observations.pdf?1416967104

    "45. The Committee is concerned that sections 141, 142, and 144(2) of the Children, Young Persons and Their Families Act 1989 appear not to give children with disabilities the same protections as other children when they are placed in out of home care."

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

  • Hilary Stace,

    There's a developing problem in providing services and support to people with fetal alcohol syndrome. Because of lack of knowledge by government and services most have been undiagnosed or wrongly diagnosed. These are the group, anecdotally, most at risk of having 'dysfunctional' family backgrounds, and of school exclusion. People with FAS don't respond to the standard behavioural interventions. Also hard to foster. Many interact with the criminal justice system from a young age. Somewhere along the line they get an assessment which indicatesintellectual disability. So they go from CYFs care to MoH DSS care. But they need specialist facilities. Instead they are being placed in inappropriate residential placements such as with high needs but gentle autistic adults who like routine and sameness.

    Wgtn • Since Jun 2008 • 3203 posts Report Reply

  • Rosemary McDonald, in reply to Hilary Stace,

    Yep. And so often it is the sober grandparents who care for the FAS children as the parent's alchohol abuse precludes parenting even a child without the added issues of brain injury.

    And we should also talk about the children damaged in utero by other substance abuse. Pot, solvents, legal highs, prescription drugs etc.

    It is sad, tragic, and so very very avoidable.

    The sins of the parents.....

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

  • Angela Hart,

    There's a human rights issue here in that government agencies have accepted adult residential facilities as being approved for minors. They are not.

    Christchurch • Since Apr 2014 • 614 posts Report Reply

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