Hi Mark
Thank you for posting this. You articulate eloquently many of the
concerns that I have heard about in acute care rehab. I have seen very
few acute care rehabilitation units in a hospitals but I do hear about the
highly medicalised focus which tends to make staff forget that they are
dealing with thinking, feeling people rather than bits and peices of the
physiological remnants of a person. I too, feel that at this stage, people
need to be given positive messages about their future lifestyle whilst
acknowledging the challenges that lie ahead. Same for any traumatic
injury really.
I have been told also that it can be a couple of years before a person is
'picked up' by a community based support service. I have spoken to
people from such services who lament the wasted opportunities and the
actual loss of skills and function that occur during this critical time. I do
talk to my students about this situation in the hope that if they end up
working in Brain Injury or spinal injury units, they will faciliate positive
visions for the future and offer respite from therapy. They would use a
leisure education model which seeks to provide support in setting goals
and promoting self-determination (Leisure and Health students - not OT).
> I am new to this list. But I feel I have something to
> contribute on the subject of brain injury. I don't
> know quite how that relates to the term "cognitive
> impairment".
>
> I am a brain injury survivor, from an accident in
> 1992.
>
> While I can see some attractive elements within the
> UPIAS definition of disability, I nevertheless have
> significant reservations about the definition of
> impairment. To accept this definition would imply that
> I accept that my brain - a huge part of myself - is
> “defective”. I certainly accept that it is different,
> but I am not sure that I would want to automatically
> concede that this difference should be negatively
> valued. I would much prefer a definition of impairment
> along the lines of the following: impairment simply
> refers to a form of human variation, which manifests
> itself in physical, sensory, cognitive or intellectual
> differences. If you must, you could add that these
> differences are often negatively valued.
>
> This would acknowledge that many people would consider
>
> negatively value my impairment but I do not
> necessarily agree. I think this type of definition
> would be more acceptable to many brain injury
> survivors, and other disabled people who
> are developing disability pride.
>
> Another point that I would like to raise is that
> people using the social model hardly ever criticize
> the process of acute care. But for brain injury
> survivors, this is a particularly important
> human rights area because some survivors receive
> inadequate treatment in acute care. Of course, I am
> not denying that many people (including myself) owe
> their lives to medical intervention in the acute care
> stage, but I am suggesting that the area deserves more
> critical scrutiny than it currently receives.
>
> One of the areas that could be investigated is the
> failure of medical personnel to diagnose and treat
> some forms of ABI because of their emphasis on
> identifying and responding to orthopedic injuries.
> Also, families of people in a coma are routinely given
> pessimistic predictions suggesting that their loved
> one will not survive, or that they will never work
> again. Within a few hours of my accident, when the
> future was still incredibly uncertain, my family was
> told both of these things were likely. Another problem
> in the acute stage is that families are often not
> provided with adequate information to understand what
> is going on in the Intensive Care Unit. Also, once a
> person has been given the label “vegetative state” -
> and this can be as soon as three or four weeks after a
> trauma - any efforts to rehabilitate the person end
> and he or she is moved into an area where they
> receive less intensive treatment. For families who
> haven’t given up on their loved ones at this point,
> this can be a harrowing experience. The treatment of
> brain injury survivors in this state is a particularly
> significant human rights issue for disabled people
> given that a recent medical survey found that such the
> diagnosis of “vegetative state” was incorrect in 37%
> of cases (Childs et al quoted in Shiel and Wilson
> 1998:809). These are areas that deserve critical
> scrutiny from disability activists and advocates of
> the social model.
>
> Even if you are lucky enough to escape the label
> “vegetative state”, your family may still be pressured
> into agreeing to have you put into an aged care home.
> Over the last few weeks, I rang nursing homes in my
> city (Brisbane, Australia) to find out how many of
> them had young people with ABI living in their
> residences. About one-third openly acknowledged that
> this was the case. One nursing home said that they had
> a girl who was 17 with an ABI. She is sent to a
> special school during the day and an aged care home at
> night. Why does this occur? I would suggest that it
> occurs because shortly after a brain injury, at an
> incredibly stressful time in the lives of family
> members, when they are very much still searching for
> information and support to deal with what has
> happened, a great deal of pressure is put on family
> members to agree to the plans of health professionals
> to segregate us. If you don’t have a family that will
> advocate on your behalf, there may be little
> resistance to your placement in an inappropriate
> environment like an aged care home.
>
> Even if you make it through to life in the community,
> you are often abandoned. No services, no support. This
> has been my experience too. Over a long period of
> time, you learn about the services that are available,
> but these services are usually fragmented, inadequate
> and inefficient. People who provide such services
> often have very little understanding of ABI and the
> narrow definitions of eligibility mean that you are
> usually unable to receive any services. In all of the
> time since my accident, despite threats of
> institutionalisation, suicide attempts, constant
> medication and multiple hospitalisations, I’ve never
> had any lifestyle support. Never. Not any. And the
> situation is the same for nearly all the survivors I
> know.
>
>
> =====
>
> __________________________________________________
> Do You Yahoo!?
> Bid and sell for free at http://auctions.yahoo.com
Best regards
Laurence Bathurst
School of Occupation and Leisure Sciences
Faculty of Health Sciences
University of Sydney
P.O. Box 170
Lidcombe NSW 2141
Australia
Phone: (62 1) 9351 9509
Fax: (62 1) 9351 9166
e-mail: [log in to unmask]
Please visit the School's interim web site at
http://www.ot.cchs.usyd.edu.au
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Not one shred of evidence supports the notion that life is serious
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