I use the term 'disability sector' to mean all those who have an interest in disability issues, as opposed to those who haven't. Can be personal or professional. So it can include anyone from disabled people to agencies providing services, to researchers or even journalists. Many of them are likely to know the name of the Minister for Disability Issues, to have heard of the UN Convention on the Rights of Persons with Disabilities and/or be familiar with some of the relevant acronyms such as ORS or NASC. The sort of people who might hear about this blog and read it.
I use the term 'disability sector' to mean all those who have an interest in disability issues, as opposed to those who haven't
So, like when I say 'disability movements'?
Hopefully, they care about making things better, but not necessarily collectively. It could be just improving one's own salary as a provider of services.
Cynicism is such a risk. :)
I disagree with your definition of sector. To me people with disabilities are the primary stakeholders of that sector. The notion of a sector as providers rather than 'consumers' is a nonsence. Rather than a misunderstanding of what a sector is, the choice to use sector as including people with disabilities is a choice to give greater agency to people with disabilities and reframe discussions from which they had been excluded.
thank you. fair enough.
Sacha...."Service providers deliver a variety of services focused on the immediate needs of disabled people and/or families, often focused on particular impairments. These are the mostly non-profit organisations familiar to the public over decades, such as CCS, IHC,...."
Idea Services (IHC) were paid over $240,000,000 for providing 'services'...and made a ...no, sorry, had a surplus, of $150,000,000 for the same year....if the Charities Commission website is right. I know what I am going to be reincarnated as.
Having said that...thanks for putting families of disabled people in second place rather than at the bottom of the list.....after the service providers.
please do elaborate
if the Charities Commission website is right
and please link
Extra reliance on family for support can amplify the usual struggles most parents face letting their children take risks and live their own lives
This line reads as though it was written about families where it is the child(ren) who has the disability, so I thought I'd note that it can also be true when it's the parent(s) who has the disability.
You mean where the children don’t let their disabled parents take risks?
No doubt that too, but I was mainly thinking of when disabled parents don’t “let” (want to let) their children take risks or live their own lives because of expectations that their children will provide them with support, beyond or earlier than what parents without disabilities may expect.
Ooh, that sounds tricky.
The notion of a sector as providers rather than ‘consumers’ is a nonsence.
Yet when agencies claim to have "consulted the sector" guess who they have spoken with?
Sacha...I confess to feeling more than a little sensitive at the moment, having be cast forever into the lowest section of NZ society...ie; those denied the right to take their most significant issue to the courts, by virtue of the PHDAct amendment.
I have spent the past three years trying to identify the various competing interests influencing the government response to Atkinson and Others v. MOH.
Yes, there is the message being put out by some in the sector that paying family carers will place the person with a disability at risk of abuse, neglect and exploitation...that we will use the disabled child/parent/spouse as a 'meal ticket'.
Some will. But most will not. And we had much needed support from the likes of the Medical Association and the Disabilities Commissioner.
Both of these people also drew attention to the less than optimal care from the contracted providers...the "professionals".
Again....there is plenty of evidence to support the lack of confidence that many disabled people have in those providers. That many parents, children, and spouses and partners of disabled people have in those providers.
Yet, those providers have had their businesses protected by the amendment to the PHDAct and the diabolical Funded Family Care scheme. Cabinet dscussion papers suggested that up to 60% of those eligible for funded support would choose family carers if given the choice. Big hit for those making a healthy profit/surplus from their lucrative government contracts...contracts that do not seem to demand that they do not cause the deaths of their disabled clients .
Yet, these businesses...with a proven crappy track record....enjoy a much closer relationship with, and much more respect from, the major DPOs.
So, that was why I was gratified to see "family" ahead of service providers on your list.
A bit pathetic, I know. But I'll take it as a little win.
The "lol" is there to soften my tone...I do come across as a little stroppy!
Or when the spouse or partner of a disabled person avoids risk so they are fit and able to continue giving vital support.
Or when spouse/partner of disabled person with risk- taking tendencies tries to mitigate the risks as to avoid even further impairment.
Seriously though...Kiwis do not have a very good track record for avoiding risk to their children. We drown them and run over them and fail to put them in appropriate restraints in moving vehicles. We send them out into to big bad world to make their own choices....and some live to regret their decision not to place firmer boundaries in place to keep them safe.
How many times have we seen grieving parents fronting cameras pleading with the rest of us not to make the same mistake?
Yet, those of us who have always acknowledged risk....and impressed upon our children the safety messages are accused of being "helicopter parents"...always hovering protecting our children. None of us can win.
In my experience, which is considerable, 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.
I think if we can be aware of the risk of being over protective (soley because the loved one is disabled) without going too far in the other, more permissive direction, balance can be acheived.
More discussion needed methinks.
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.
Yet when agencies claim to have "consulted the sector" guess who they have spoken with?
yes, it rankles that groups representing paid support services purport to represent disabled people.
Who has an interest in disability, some people don't they are in the grips of self interest("rest of society be damned" personality types). Many do not know there is a problem for the growing number of disenfrachised kiwis, and if they knew how bad it is for some and what happens they to would support the right to give input & feedback .
The motivations and interests in disability of most the orgs (service providers, support etc) is securing or increasing funding and promoting themselves to the public as "vonderba" and effective consultation on disability issues.
Then you have disabled people(& families) many are fighting injustices and discrimination, they just want their needs( access , mobility , care or help) IE the govt/ACC to purchase & provide legal obligations . Into this group go the people who try to help the disabled and their families .
So the "stakeholders" mentioned are not all interested or motivated to improve outcomes in the NZ disability sector for disabled people.
So I would say everyone is, but many have no interest in the provision of needs , representation and better outcomes for disabled people and so do not represent disabled people .
Humanity is one.
Unfortunately with words we have distorted facts and we have divided everyone into labels and then measured their worth based only on the values of those in power.
Not taking( and acting on) input from those that live with the disability funding decisions is like having a neural system with broken synaptic feedback loop- it is not getting the information and has formed a pathway that is not desirable for humanity.
I will try to explain better if anyone wants clarification.
From my perspective Lucy, neither the children nor the parents have 'the disability'. Disability, like racism and sexism, is imposed upon a particular group of people, viz those with impairments; it is not an attribute of individuals but social oppression. Or, in other words, disability is the negative social response to impairment.
which usually means exactly the same as "impairment".
Other than "disablement" are there words for the social process that are not stupidly the same as the old word for the personal component? Whoever decided to use the same one didn't do us all any favours.
oh, and thanks for coming here, Martin.
So after semantics play (and our fixations on words and tripping up on them) who do you think are "stakeholders" in the- social- response- to- impairment ?
2) Should we have a shadow govt and shadow reports? Should our human rights (under the UN convention) just be "optional"?
3) Optional question :if your funding (and funding for all those interested and motivated in the arena of disability support) was fixed and not dependent on this (shadow) govt wouldn't this see and improvement in the responses and actions of those stuck in-the-social-response-to-impairment?
In my case I know there were also (amongst the drones) a couple of kind people who felt fearful & helpless to act against an (*imagined) giant corporation and all its shadows.