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DISABILITY-RESEARCH  March 2006

DISABILITY-RESEARCH March 2006

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Subject:

Re: quality of life

From:

Hazel Frost <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Wed, 15 Mar 2006 08:20:44 -0700

Content-Type:

text/plain

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text/plain (357 lines)

Couldnīt agree more.  I have had the privelege of working in a very small
voluntary project where we had a lot of freedom to do more or less
whatever we wanted, within legal limits, but I have friends and colleagues
who work for state provided services who have to abide by all manner of
rules which mostly seem to be designed to accentuate segregation and limit
opportunity.  Two examples; a staff member may not take a service user
into their own house under any circumstances; a staff member may choose to
take a service user out in their time off, but they may not bring any
other friends or family members with them.  Net result; staff members are
unable to any more than their job description requires, because red tape
prevents anything else.  It doesnīt even make logical sense: what greater
"risk" would a staff member be taking by inviting someone back for dinner,
which they are not allowed to do, rather than going with the same person
to a pub or nightclub, which is allowed by the rules?  Thatīs just one of
the many reasons why I will never work for statutory services, which is
probably not the answer, but it is the position I have come to.


Cheers
Hazel





> Having cared for adults with psychiatric disorders in a previous career, I
> can
> attest to the pressure not to make friends with those with whom one is
> working.
> At the time, the justification seemed to be that one's objectivity was
> lost if
> one got too close to "patients", and that somehow something "bad" would
> happen
> if this happened. Maintaining a "professional distance" was inculcated
> from day
> one of the Registered Nurse training. The concern seemed to be that one
> would
> be "manipulated" into taking risks that might put the hospital - not the
> client
> - at risk. The underlying message was that they were "different", and
> could not
> know what was best for themselves. At the time Crown Immunity was in place
> in
> the UK, so there was little or no risk to the hospital of being sued. I
> was
> regarded as naive, because I, like John who wrote the original posting,
> thought
> that there was a lot to be said for allowing people to take calculated
> risks in
> their own treatment. (Of course, there was also the Mental Heath Act to
> take
> into account in some cases).
>
> Why this continues, I do not know. Risk of litigation maybe plays a part,
> but
> the doctrine was in place long before the changes to the system. If I were
> put
> on the spot, and forced to give an answer, I'd have to come down to it
> being an
> exercise of power - what can an untrained patient tell a trained
> professional?
>
> I hope this adds something to the debate.
>
> Yours,
>
> Jeremy.
>
>
> --
> Jeremy Wickins,
> PhD Researcher, Biometrics and Social Exclusion,
> Sheffield Institute of Biotechnological Law and Ethics (SIBLE),
> Department of Law,
> University of Sheffield,
> 169/171, Northumberland Road,
> Crookesmoor,
> Sheffield. S10 1DF
> UK.
>
> Tel: +44 (0)114 222 6881
> Fax: +44 (0)114 222 6886
>
>
>
> Quoting John Homan <[log in to unmask]>:
>
>> Good morning all,
>>
>> My partner Sandy and I argued strongly in a paper delivered at the
>> International Conference for Community Engagement in Brisbane Qld
>> Australia
>> last year (Paton, S., Homan, J., 2004, 'Learning with Amanda') that the
>> criticals in the quality of life for people who are intellectually
>> impaired
>> (and everybody else for that matter) are, apart from respectful
>> relationships:
>>   1.. The ability and opportunity to make choices, and
>>   2.. The opportunity to form relationships.
>> We based this opinion on existing literature as well as empirical
>> evidence
>> with my daughter Amanda who for more than four years has been supported
>> by a
>> self directing team whose culture lead them to do just that,
>> individually and
>> collectively.
>>
>> Team members have built strong relationships with Amanda and a natural
>> part
>> of that is that they 'hang out' in different places, including each
>> others
>> homes, and that of friends and family. This has been demonstrably to
>> Amanda's
>> benefit, and also that of team members as it expanded opportunities for
>> 'community access' beyond shopping centres and public parks.
>>
>> We have found it necessary to codify this natural practice in policy to
>> demonstrate to service providers that:
>>   1.. Life is risky, but risk may be managed, and by sharing it can be
>> further reduced,
>>   2.. The policy is discretionary (further reducing risk): there needs
>> to be
>> a clear benefit to the client, he family/advocates favour it, the
>> individual
>> support worker wants it, and the service provider agrees to it.
>>   3.. In principle it is no different than the widely practiced Host
>> Family
>> model: 'client visits paid carers home'.
>>   4.. By having appropriate insurance cover and conducting an
>> Occupational
>> Health and Safety check in support workers homes, risk may be further
>> reduced.
>> In spite of demonstrated benefit, more than four years of practical
>> experience (involving more than 15 support workers at different times),
>> credibility through the literature, and a clearly articulated policy,
>> many
>> service providers are reluctant to consider the 'Friendship Policy' as
>> an
>> option. No reasons have been given to me other than that it is not part
>> of
>> their 'policies and procedures'.
>>
>> Why?
>>
>> I would welcome some constructive discussion on this matter, through the
>> lists or direct with me on [log in to unmask]
>>
>> rgds John
>> (in sunny Yeppoon, where the Tropic of Capricorn intersects with the
>> East
>> coast of Australia)
>>
>> Post script: Below the actual 'Friendship Policy'.
>>
>> 'Friendship Policy'
>>
>>
>>
>> FlexiOptions believes that friendships are an important contributor to
>> the
>> quality of life of all people, including people with intellectual
>> disabilities.
>>
>>
>>
>> S. Paton and J. Homan wrote:
>>
>>
>>
>> Operating on a traditional paradigm, many support services and
>> government
>> departments actively discourage the development of close personal
>> relationships between carers and clients. It is seen firstly, as 'not
>> professional' and, in line with the medical model of disability, appears
>> aligned to the doctor/patient model of relationships and in many
>> instances is
>> focused solely on maintaining the physical integrity of the person.
>> Secondly,
>> relationships between staff and clients are frequently presented as
>> placing
>> the staff member in the position of 'conflict of interest.' We must ask
>> ourselves: "How can this be?", if the institution, agency or service
>> provider
>> is truly focused on working in the client's best interests and providing
>> quality of life, as well as physical care. The traditional paradigm
>> assumes
>> that the intellectually disabled either do not require love or
>> friendship or
>> that they are able to meet these needs outside the care network.  The
>> perception from the medical community that 'children like that don't
>> need
>> love' (Smith 1997 cited Croft 2000, p. 170) was in the past also used as
>> justification for institutionalizing them.
>>
>>
>>
>> Work done with intellectually disabled people supports the Schalock
>> study
>> (cited McConkey R., Walsh D. and  Sinclair M. n.d., p.3) which notes
>> that the
>> two most important aspects of quality of life for intellectually
>> disabled
>> people in residential care are: 'the quality and breadth of
>> interpersonal
>> relationships with family and relatives, and the extent of residents'
>> involvement with their local community and their social inclusion in
>> it.'
>>
>>
>>
>> O'Brien (1999, p.2) notes that for many intellectually disabled,
>> 'friends'
>> include individual care workers who have a strong personal commitment to
>> the
>> wellbeing of their client, and are identified by that person as a
>> friend. He
>> further suggests that excluding people from the possibility of
>> friendship on
>> the basis of their role alone runs contrary to the personal experience
>> of
>> many disabled people and their families, noting: 'Such exclusion by
>> definition denies the fact that some service workers do transcend their
>> roles.'
>>
>>
>>
>> The reality for many cognitively disabled people is that they do not
>> have the
>> consciousness, capacity or opportunity to initiate meaningful
>> relationships
>> for themselves. Yet, as previously noted, it is the quality of our human
>> interactions and the depth of our relationships, which add real value to
>> our
>> lives. However the development of equal and respectful relationships
>> does not
>> just 'occur'. Relationships require an initial and continuing commitment
>> of
>> energy from both parties. Paton (2002, p. 8) notes that effective
>> relationships are not warm, fuzzy options but require work to keep
>> functioning efficiently. The level of the input into each relationship
>> is of
>> course inherently linked to the capacity of the people involved.  Yet
>> paradoxically while people with intellectual disabilities may be limited
>> in
>> the conscious contribution they make, many, when provided with the
>> opportunity to form relationships give everything they have to give in
>> love,
>> loyalty and commitment
>>
>>
>>
>> Learning with Amanda, Paton, S., Homan, J., 2005. Pages 9 and 10
>>
>> (Paper presented at the International Conference for Community
>> Engagement,
>> August 2005, Brisbane)
>>
>>
>>
>>
>>
>>
>>
>>
>>
>> This policy addresses:
>>
>>
>>
>>   1.. Relationships between clients and support staff, and
>>   2.. Access by clients to support staff's homes and properties.
>>  Although friendships and visiting each others homes are part of every
>> day
>> living and community expectations, there are occasions where this is not
>> appropriate, and for this reason the policy is discretionary.
>>
>>
>>
>> The process is;
>>
>>   1.. There is recognition of the need to
>>     1.. encourage a friendship between client and support worker, or
>>     2.. it is considered beneficial for the client to access the support
>> worker's home, or
>>     3.. all of the above
>>   2.. A Memorandum of Understanding is entered into between:
>>     1.. Family/advocate,
>>     2.. Support staff (individually or collectively)
>>     3.. he service provider.
>>
>> When access to the support worker's home is included:
>>   1.. The service provider has appropriate insurances in place.
>>   2.. The WH&S Officer is asked to arrange an audit of the support
>> worker's
>> house
>>   3.. The WH&S Officer works with the support worker to establish a safe
>> environment.
>>   4.. If there is contact with other family members of the support
>> worker
>> over 18 then register them as volunteers and request they obtain a 'Blue
>> Card'
>>   5.. WH&S Officers issues a Certificate of Inspection after the house
>> has
>> passed the audit.
>>   6.. Where a house does not comply under the standard inspection, the
>> offending matter is put in writing for the consumer/family to sign an
>> agreement that they are willing to accept this risk.
>>   7.. Certificate lasts 12 months
>> As this system may be abused, regular discussion with all parties are
>> desirable
>>
>>
>>
>> JH, 170106
>>
>>
>>
>>
>>
>>
>>
>> ________________End of message______________________
>>
>> This Disability-Research Discussion list is managed by the Centre for
>> Disability Studies at the University of Leeds
>> (www.leeds.ac.uk/disability-studies). Enquiries about the list
>> administratione should be sent to
>> [log in to unmask]
>>
>> Archives and tools are located at:
>> www.jiscmail.ac.uk/lists/disability-research.html
>>
>> You can JOIN or LEAVE the list from this web page.
>>
>
> ________________End of message______________________
>
> This Disability-Research Discussion list is managed by the Centre for
> Disability Studies at the University of Leeds
> (www.leeds.ac.uk/disability-studies). Enquiries about the list
> administratione should be sent to [log in to unmask]
>
> Archives and tools are located at:
> www.jiscmail.ac.uk/lists/disability-research.html
>
> You can JOIN or LEAVE the list from this web page.
>
>

________________End of message______________________

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