Michael wrote:
Why are focusing on aspects of the extent to which people mix with people
without disabilities etc. to gauge
quality of life?
I agree we should not NEED to focus on a person's involvement with people
who are not disabled and, indeed, there is no necessary correlation between
the people you mix with and your quality of life.
However, in the deinstitutionalisation of people with an intellectual
disability one of the identified benefits has been integration into the
general community and one very real measure of this is the degree to which
people who are different are involved with those who are not.
If a person who has a disability and is dependant on others:
has no choice over who they live with and who they interact with;
only interacts with other people who have similar disabilities and
similar support issues; and
lives in a house run by staff paid to support them where they have
limited rights.
then I think that will have an impact on their quality of life.
This does not necessarily have to be a negative experience as long as the
person has some control over these factors and the more control the person
has over their life the better their quality of life.
..... a limited argument about devaluation, rather than attempting to
really establish what a subjective "quality of life" for these residents
would be.
The research will attempt to quantify the person's involvement with others.
It will not argue that mixing with people who do not have a disability is
better than mixing with those who do. Rather it will look at how "normal"
is their friendship circle and how much control do they have over who they
mix with.
Certainly people with a disability may choose to only mix with people with
a disability and I would support that decision if it was freely made by
those involved. However if, as I suspect, the outcome occurs DESPITE the
wishes of the person rather than BECAUSE of their wishes then I think we
need to start asking serious questions about the service model supporting
the person.
If the result of structuring support to a person with a disability in small
groups further isolates them and increases their exclusion from their
community then I think we need to take a serious look at the values
underpinning that service model and its structure. Having hard data
enables us to challenge the status quo.
..... If your research were able to challenge some of the blanket
perceptions that people in group homes have to measure their quality of
life against the quality of the friends they may have, you would be doing
the sector a great service.
I do not suggest that friends who have a disability are of a lower status.
They have attributes which are different and measurable and it is not
NORMAL for people to only mix with people from marginalised groups. That
is one of the main arguements in favour of deinstitutionalisation.
Quality of life measures (and there are heaps of them) identify DIFFERENCE.
The hard bit then is to explain what has caused that difference and then do
something about it.
Do we think that people with disabilities should mix with people who do not
have disabilities. If we argue in the positive and then find out that
significant groups of people with disability have little or no contact with
people who are not disabled then we have to ask WHY NOT.
If the explanation is that they have chosen to do so then so be it but, if
the explanation is that there are systemic causes outside the persons
control then we must work to change them.
Hope this is useful
John S
Michael Bleasdale <[log in to unmask]> on 12/03/99 08:53:33 PM
Please respond to Michael Bleasdale <[log in to unmask]>
To: [log in to unmask]
cc: (bcc: John Storey/HeadOffice/DHS)
Subject: Quality of Life for CRU Residents
Dear John, Just a quick question. Why are focusing on aspects of the
extent to which people mix with people without disabilities etc. to gauge
quality of life? Seems very focused on a limited argument about
devaluation, rather than attempting to really establish what a subjective
"quality of life" for these residents would be. If your research were able
to challenge some of the blanket perceptions that people in group homes
have to measure their quality of life against the quality of the friends
they may have, you would be doing the sector a great service.
Yours,
Michael Bleasdale
At 12:15 11/03/99 +1000, you wrote:
>I am currently researching the degree to which people with an intellectual
>disability/learning disability/mental retardation who live in small group
>congregate care facilities (Community Residential Units in Australia)
>providing 24-hour support are integrated into their community.
>
>In particular I am interested in identifying their:
> ongoing contact with people who do not have a disability and who are
NOT
> paid to be involved with them;
> time spent with people who are not disabled; and
> use of generic services
>
>I am interested in finding out about other research in this area.
>
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>-------------------------
>John Storey Phone: +61 3 9616 7956 FAX:
> +61 3 9616 8555
>Statewide IHAS Coordinator Email: BH:
>[log in to unmask]
>Continuing Care, Service Devt, AH:
>[log in to unmask]
>Disability Services Branch, Victorian Department of Human Services
>18/555 Collins St (PO Box 4057), MELBOURNE, Victoria 3162 , AUSTRALIA
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