Wednesday, 22 February 2012

PRICKS AND PIP-SQUEAKS BE WARNED

She's not going away!

Relayed to me from Deepest Down Under, a Round Robin from veteran CE-campaigner Sue O'Reilly, sent out to genuinely progressive souls concerned for cerebral palsy in New South Wales.

I'm writing to advise of the creation of a new grassroots networking and information-sharing venture for people with cerebral palsy and/or family members, enabling them to raise and discuss any questions, issues and/or concerns (or pass on advice) re accessing disability services in NSW – to be called the CP Clients and Family Forum.

Information, as they say, is power, and it seems to those of us who decided to establish this group that currently, there are very few ways for individuals to access detailed, factual information (as opposed to vague, glossy PR spin....) as to what is going on on a Statewide basis with disability service provision. 

We have decided to take a Statewide, as opposed to national, perspective with this new venture because services are currently delivered on a Statewide basis by State-based entities –  either govt departments or NGOs; and we have decided to focus on cerebral palsy as opposed to any other disability because, well, that's the disability area of interest to the people who decided to establish this Forum. If this new online networking, information-sharing idea proves useful and effective, however, there's no reason it couldn't be replicated in other states, or for people with other types of disabilities who need disability-specific types of services. 

One of the aims of this venture, for example, will be to press NSW's CP service providers (govt and non-govt)  to be far more publicly honest and up-front about current waiting times for essential services and equipment. It's easy for providers to make vague, entirely correct statements such as "We fund therapy services/wheelchairs/supported accommodation for people with cp". But statements like that raise people's hopes – and if/when it turns out that, actually, there's an 18-month wait for a therapy appointment, or a three-year wait for a wheelchair, or a 30-year wait for supported accommodation, then people are reasonably entitled to feel misled. 

We hope this new grassroots Forum will also prove useful for service providers, giving them some new insight into what their clients are actually thinking and experiencing on the ground, and providing a ready-made client consultation/feedback body.

Please onpass information about the formation of this new Forum to anyone you think might be interested, and also among your networks. There's no membership fee and no one has to go to any meetings because we can all communicate amongst each other online, at cpcff.blogspot.com 

The email address for the Forum is cpcff@gmail.com

Contributions and comments are welcome, and names can be withheld upon request for those worried about Death Squads knocking on their doors at 3am.

Good on you, Sue. Keep kicking against them till very pips squeak. Would that there were the likes of you and your political naus in many another place around the world.

CP Clients and Family Forum: cpcff.blogspot.com

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