Posts by Angela Hart
Last ←Newer Page 1 2 3 4 5 Older→ First
-
Access: Disability Stakeholders, in reply to Rosemary McDonald,
most parents of children with disabilities have had to develop a heightened sense of risk for their children. The consequences of failing to recognise the risks and mitigate them can be fatal.
As a parent of a disabled (now adult) daughter, one of the most difficult things was allowing/encouraging ordinary play activities. I won't forget standing watching heart in mouth as she enjoyed climbing playground equipment with her brother (before safety matting) and proudly waved from atop or within the trees in our garden. You have to let your loved ones fly, but you also try to keep them safe.
The worst incidents occurred at school, and later, in hospitals, where others had professional responsibility but failed miserably to apply it. -
Access: Defective, deficient, deviant…, in reply to Sacha,
Here's the sort of official response that's sadly all too common when someone challenges the system.
yes, challenging it is dangerous and I know I'm vulnerable. There are too many examples from the Problem Gambling Foundation down.
-
Access: Words and Disability - The…, in reply to Kay,
Kay, it doesn't really make a lot of sense . I expect you could find some sort of health problem with most of us, but the media tend to focus on one or two that they presumably think the public are interested in with respect to crims.
Sacha, I can understand that claim, I've often been asked in forms if "I'm living with a disability" the answer is yes, but with this question it doesn't have to be my disability, it could be that of a family member. I'm not at all sure that a parent or family member who can speak for someone non-vocal or intellectually challenged shouldn't be able to do so, otherwise how are these people to be represented in the statistics? Generally they probably are not. We have never been contacted to participate in the survey on disabled people, I wonder how representative the sample can be.
But none of that provides a valid reason for not releasing the survey responses, as fas as I can see. -
your post is about a lot more than Funded Family Care, I shouldn't get hung up on it, but the Public Health and Disability Amendment Bill passed in May 2013, was pushed through under urgency, the information provided to MPs was heavily redacted and as far as I can see if we had a democracy then, it died that day.
Cause and cure both take away from what is to some degree. While we should want to make life better for everyone, we should also accept people as they are. Here's a contentious statement for you.
Most of the people I know who have a disability or a close connection with someone impaired are better people than most of the people I know who have not experienced a close relationship with someone disabled and are not disabled themselves.
By better people I probably mean their values better align with mine. -
Sorry, the link above is not quite right. The easiest one to check is this one http://www.health.govt.nz/system/files/documents/pages/cabinet_paper_-_proposed_response_11_december_2012.pdf
-
Access: Cause, care, cure and celebration, in reply to Angela Hart,
Meanwhile disabled adults and their family carers had to fight in the courts for a decade for the family carers to be paid on the same basis as strangers coming into the home.
But although they won all the court cases, they haven't actually won, have they?
Funded Family Care does not pay family carers on the same basis as strangers coming into the home.As the Minister of Health said last year when announcing the minimum wage for a maximum of 40 hours a week for only some parents (not parents of children, nor spouses) and denying any further access to legal challenges, ‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).
Yes. The Act intentionally discriminates against partners, spouses and parents of children under 18. It does so with malice aforethought, as can be seen in the cabinet papers relating to this on the MOH website http://www.health.govt.nz/our-work/disability-services/disability-projects-and-programmes/funded-family-care-notice-and-operational-policy/funded-family-carers-background-documents
‘Our society expects parents to care for and support their dependent children’ (with a sub text – for no pay and whatever their age).
and also with a subtext that it doesn't matter how poor or disadvantaged this makes these families, these people don't matter.
Well we do matter. We are a significant portion of the population and we have votes. We need to organise in ways that cannot be subverted by government funding and we need to make our voices heard.
-
Where do I fit?
I take the view for most aspects of life that extremes are bad and balance is needed.
For instance, while I can see a great deal to celebrate in some aspects of autism and some of the people in certain parts of the spectrum, I don't see a lot to celebrate at the extreme end of this spectrum. Life seems so difficult for all concerned for those in this situation. And even those with a lot to celebrate nevertheless miss out on much in the area of relationships that most of us cherish.
Similarly there is a strong deaf culture which values and supports its own, but nevertheless, those with full hearing loss are unable to sense a world which is open to the rest of us, and which has its own beauty. They are accenting the positives and making the best of life and that's a good thing, but they are still missing out on aspects of life the rest of us enjoy. However, we all miss out on some things don't we? We don't all manage to see other parts of the world or wear designer clothes, and these things don't necessarily matter. -
The trouble with reports like this, policies etc, is that they assume a genuineness, an honesty, a will to do the right thing, take the appropriate action and so on. The trouble is that although there are many good people working for the various ministries and agencies, they usually have their hands tied by authorities who have the bottomline uppermost. The fact is that most of us have to expend considerable energy (which we don't always have to spare) just getting basic needs addressed.
To take a quote from the Putting People First document linked above:
The impact of the Ministry’s culture on providers is to drive good practice underground, as they too seek to cover their backs
We are fighting this all the time. The people who are supposed to be providing support are actually asking themselves what is the least costly provision which will keep us out of the media because something has gone catastrophically wrong.
To go back to institutionalised care, the MOH contracts providers for respite care. You can only use the MOH providers. There is usually no other option, even if you had the dosh. The MOH has agreements with these providers to almost guarantee them sustainability, and in the process stifle any competition from potentially better quality services. While the MOH put standards etc in place, if they are found in serious breach, it takes far too long for the MOH to do anything about it. In the meantime people suffer and sometimes die because of the lack of proper care. The contracts and systems in place do not put prioritise health and safety of the people in care.The Putting People First report has the right approach, but will its eventual implementation be able to overcome the embedded viewpoints within the MOH?
I doubt it. Maybe if I live a very long time I might notice some progress. By then it won't help me or mine. -
Access: Words and Disability - The…, in reply to Mireille,
Heh. The German equivalent is "shackled" or "chained" to a wheelchair (an den Rollstuhl gefesselt). More black and white than 50 shades of grey.
Lovely!
I wonder what the rationale is for Statistics NZ to suppress all the answers, it's not as if the material can be tracked to source.
-
Access: Who Are Disabled New Zealanders?, in reply to Sacha,
connect, organise, demand
Words matter but as long as we're not trying to offend we need to be able to speak clearly to get the best understanding. If we trust each other enough to say when something bothers us, communication between us should improve.
Anyway, harking back to the quote above, I want to do something to improve the situation here in lovely New Zealand. BDB Inc doesn't want to talk about political parties and their positions on disability, and that's fine with me. But how do we organise? We are working on connecting right now. We can't demand until we organise, as far as I can see.