John
Your article is good because it causes me to reflect. One of the things I
thought about when considering that your "assisted decision making" was
that it could really be extended at least theoretically to an ideal where
the decision is singly and absolutely that of the individual with the only
assistance being the presentation of options. I was then prompted to think
of how things were just 15 years ago when I worked in an institution and
was one of the new staff brought in to instigate the new concepts in "care'
such as "decision making and choice", a notion scoffed at by existing staff
and parents too! It does sound easy doesn't it? Offer a person a range of
options and they will choose one or maybe more - or maybe a choice that
just requires a yes or no answer - a nod or shake of the head - a lean
forward to indicate willingness to participate.
It wasn't as straightforward as that. I was working with people who had
been allowed no capacity to make decisions for their 35 years (or so) of
life. I still remember some of the responses to questions like "do you want
to go swimming?" and instead of a nod of the head or shaking of the head or
just walking away, I would get a person throwing themselves to the floor
apparently racked with pain and a full blown crying fit thrown in for good
measure. THIS is how they used to say "no" before this new-fangled decision
making and choice thing came in. I began to see a general improvement in
people's ability to say "yes" or "no" after about 5 years of
encouraging "yes" or "no" responses.
Its sometimes too easy to think of such basic human rights as being
accessible to all by applying principles of decency and respect...and its
just going to happen. Its a darn good place to begin the process though.
At 02:20 PM 9/19/2003 +1000, homan wrote:
>Good afternoon all,
>
>Attached the result of my labours on 'Community Access' Thanks to those of
>you who have contributed. Some I have quoted, all of you have influenced
>this paper.
>
>I don't believe it possible to create a document that everybody loves, so
>if the opinions losely ilign with yours then I will be happy!
>
>I have forwarded the paper to DSQ Rockhampton who will I trust send it on
>to DSQ Brisbane, where I hope it will be effective in loosening the grip
>of those who think that they know best what is good for Amanda, without
>consideration for what she wants from life.
>
>I also hope that this paper will make others think about this matter, and
>cause a flow on effect elsewhere, to the benefit of people with disabilities.
>
>Again thank you for your help, rgds John
>
>
>
>
>
>Community Access
>
>Background
>
>When Margaret Thatcher said: "There is no community, only individuals",
>she saw the world as an institutional/medical model; rather than the way
>we understand it, as a matrix of relationships.
>
>When de-institutionalization became a priority in Queensland, during the
>Goss Government, thinking changed: where residents had been seen as
>'objects' or 'patients' there now was some appreciation that they were
>persons first, rather than just disabilities. Practice however changed
>very little. The ALS through the 'Villas' phase has now moved to
>'institutionettes' in public housing. The walls may not be as high, but
>isolation is just as real.
>
>'Community access' came into the bureau speak on the back of
>de-institutionalisation. "Community access is a bureaucratic term for a
>process, not an outcome. The outcome is quality of life. The question is
>"Does the process substantially contribute to the person's quality of
>life."1; or, as Jane Sherwin put it: "I think of 'community access' as a
>funding bucket, not a practice framework."2
>
>Relationships
>
>Relationships are the foundation stones of community, and living a valued
>life. Mohammed Yunis said: "Charity maintains poverty"3. The same applies
>to relationships. The poverty lies in the inequality. For relationships to
>have value and be valued, they have to be respectful relationships, which
>implies relationships between equals.
>
>"Social Role Valorization (SRV) starts with the assumption that all people
>have equal value. If we deny that assumption we have to start making
>judgments on relative values of people, grading their rights and
>obligations, and may be even their relative right to live. Philosophically
>it would get us into a great deal of trouble. Hitler had a go - and
>observe the result! It is enshrined in the Indian caste system which is
>accepted but not admired, and Aldous Huxley played with it in his 'Brave
>New World'. So, although not original as a concept, the grading of the
>value of humans is certainly unacceptable in our society."4
>
>Through developing relationships people become the centre of their
>individual communities, of which there may be many, serving different
>purposes and interests; all interwoven and overlapping the communities
>built by others. These relationship communities may range from quite small
>to a wonderfully complex tapestry, rich in texture and colour.
>
>Building relationships with people is an important element, but not the
>only one. Relationships with nature, the visual arts, books, the
>performing arts, music, sports, and many other facets of life around us,
>are just as valid and rewarding.
>
>
>Community Access
>
>"'Community Access' is a very imprecise term, and is fairly meaningless as
>it is not how most people would talk about their lives. The name has also
>contributed to a 'dumbing down' of the possibilities, and a reduction in
>many cases to 'outings' that might have little or no developmental
>potential."5
>
>'Access' may be the wrong term to use: "'inclusion', meaning accepting and
>valuing the person for who they are, within a relationship (between
>individual people; between individual and wider community; between
>individual, community and environment; and between one's individual and
>community's values and actions), is a more useful term."6
>
>So, what then is 'community access' meant to achieve? Very simply:
>"Community access should enable a person with a disability to become a
>participant in community life, through the building and maintaining of
>relationships."
>
>Participation may be passive or active: reading a book, or writing one,
>listening to music or playing an instrument, watching a football match or
>being on the field, they are all forms of participation. Jane Sherwin
>warns: "I would recommend that services do the most potent things with
>people".7 Activities should not be just a filling in of time between
>meals, but be meaningful and fulfilling. Should all our endeavours be
>focused on a 'higher purpose'? John Pini does not think so, and "suggests
>that part of the message is about an ordinary life. One where when you
>choose you can go to the theatre, to sporting events, to have a meal out
>or to go to passive recreation. It is not every day to each of these, but
>the opportunity to be involved when you choose."8 Martin Pfaffel agrees:
>"For me "community access" varies from going to South Bank with my wife
>for a seafood fest to popping down to the local for a chat and a six pack
>or off to the Lyric theatre for a concert. Thank God I don't need
>legislation to do these things, but for some people with a disability and
>for some service providers, such simple activities become very complex."9
>
>Focus
>
>A respectful relationship demands that the focus is always on the needs of
>the disabled person: "Community must be constructed by the disabled
>person, and not around what the support team or family like to think of
>what the community could be."10
>
>"To ensure quality the customer must come first. To be able to put the
>customer first we must know what the customer needs, not just in terms of
>shelter food and clothing, but also in terms of his or her spiritual life,
>personal development, aspirations, at times whims, or what is now loosely
>referred to as 'quality of life'. Particularly with disabled people who
>may have no, or poor communication skills, this assessment and continuing
>reassessment of needs is difficult and demanding and in many ways
>subjective. The quality of service however begins with the quality of this
>assessment of needs." 11
>
>Where there is a lack of perception of options the support person may, and
>should, want to make suggestions for consideration. This is where
>'assisted decision making' has a role, not in a didactic, paternal,
>directive, or otherwize disrespectful manner however.
>"Assisted decision making is to enable ownership in a decision the person
>is not able to make by him/herself".
>In this way the disabled person not only shares in the decision, but also
>shares authority and responsibility, empowering the person; as it should
>be in a respectful and equal relationship.
>
>The bottom line
>
>What is the pay-off?
>
>My daughter Amanda's development in the last couple of years has been
>breathtaking. She has gained in confidence and self esteem. Her zest for
>life makes the sun shine brighter wherever she is and has a real effect on
>the people around her. She follows old and new pursuits with enthusiasm.
>The theatre is a particular highlight for her, the dressing up, being out
>in the evening, the programme, which gets examined minutely, engaging the
>usherettes in conversation, then the show, the synergy of light, colour,
>sound, and spectacle; then coffee after: these are big events in her life.
>
>These things did not just happen, they are the result of funding used
>imaginatively and creatively by a team of very switched on, and very loyal
>support workers: "Whatever it takes!" says Charlie.12
>
>Some years ago I asked myself: "What do I want most for Amanda?" The
>answer was simple: "An inclusive and meaningful life". Yes!
>
>John Homan
>180903
>
>
>
>
>
>
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Laurence Bathurst
Research Assistant
School of Health Information Management
Faculty of Health Sciences
The University of Sydney
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