This is a tricky Posting. The original offer of "Wellness" (have a look at this invitation) was well meant by good people who work in Disability and is intended to be a help. But, as Estelle points out, it does not sit that well with families who are trying to solve the central problem, not the bits around the edges.
Having read the brochure, this is what Estelle said...
"Yes, isn't this just what we need!
We're all going to die on the job, that is, die caring. We will never see our sons and daughters settled in supported accommodation. We will never have any experience of retirement as our peers are now taking for granted. We are setting up our middle-aged adult children who have intellectual disability for the tsunami moment in their lives when in the same breath they will lose primary carer, only home ever known and local community. And this is for a group of people who, by definition, are less able to accommodate change and cope with the unknown. We cannot supervise their gradual transition from home to supported care, we cannot pass on the wealth of knowledge that we have gleaned over a lifetime of caring for our person and we are sick with worry at the cruelness and injustice of it all.
But hey, let's go along and do "Wellness" - have a free lunch on the disability agency that funds these diversions and let's all forget that Australia's ageing parent carers are exploited and abandoned and that its people with intellectual disability are second class citizens, unworthy of essential services.
Let's all have an ayurvedic massage and pretend all's well with the world.
The funding for all this wellness and so many other charades masquerading as "services" should have gone where it is urgently needed: into making supported accommodation for Australian citizens who have intellectual disability. Anything else is just using a bandaid when we need the major surgery.
Estelle Shields"
I would love to see LOTS of families add Comments to this Posting so we can guage what Sunnyfield Members think - do you want Wellness, long-term solutions to our central disability problems, or both?
Let's see those cards and letters folks...
I have to agree with Estelle, but what riles me more than "services" like Wellness clinics is the unending series of conferences, symposiums, etc, which discuss disability services.
ReplyDeleteThese are heavily funded by the tax dollars that should be funding the dearth of supported accommodation and therapies. This funding comes not only in the costs of holding the conferences, but in the form of wages, registration and accommodation costs of the presenters and almost 100% of the delegates who come to indulge in self congratulation. By attending these gabfests these delegates aren't working with or for their clients on the days they are at conference.
For years we carers of adults with ID have been telling governments and service providers directly of the needs of our people, but still they ignore us and feel it necessary to continue their annual gatherings to talk about us, but without us. Carers are rarely invited to these conferences, and if they are the costs are impossible for a group of people who cannot get respite care to attend, are already borderline impoverished and have no way of claiming the costs as tax deductions.
And don't get me started on "advocacy groups". These are more often than not funded by government with money that would be better used for supported accommodation. What riles me most is that they proclaim to represent people with ID and their families. Very few of these "advocates" have ever said anything with which I agree (on behalf of my son with ID).
Two interesting recent articles in the Sydney Morning Herald:
ReplyDeleteDistraught parents of disabled children warn of desperate fight for help:
http://www.smh.com.au/nsw/distraught-parents-of-disabled-children-warn-of-desperate-fight-for-help-20100930-15zd7.html
Mother branded mentally ill after complaint:
http://www.smh.com.au/nsw/mother-branded-mentally-ill-after-complaint-20100929-15xij.html