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DISABILITY-RESEARCH  April 2010

DISABILITY-RESEARCH April 2010

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Subject:

Re: Assessment For Managing Personal Care Attendant

From:

Zoe Picton-Howell <[log in to unmask]>

Reply-To:

Zoe Picton-Howell <[log in to unmask]>

Date:

Fri, 9 Apr 2010 16:51:02 +0100

Content-Type:

text/plain

Parts/Attachments:

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Thanks for your email Matt

This is an area into which I have done some limited research. I also  
have some personal experience of the problems that can occur.

  I am particularly interested in situations where children with  
disabilities have chronic serious health problems requiring one to one  
care.  There are a number of cases I am aware of where the children  
have such serious health problems, eg frequently stopping breathing;  
hypothermia; uncontrolled seizures, and there is an expectation by  
health professionals that the children will only have a very limited  
life expectancy (usually under three years).  Health authorities seem  
willing to put registered nursing care packages in place.  However,  
when the children then survive (often because they are receiving a  
good standard of health care) the health authorities wish to withdraw  
the nursing care, nervous at the on going long term financial  
committment.  Indeed, I have even seen email correspondence between a  
health authority and a member of staff of a local authority stating  
that it is the health authority's policy to withdraw care once such a  
child reaches the age of three.

My research has been from a legal/rights/ perspective (I am a  
qualified English solicitor and doing a PhD into the law, rights and  
ethics of health care for children with disabilities in the UK, see  
www.law.ed.ac.uk/research/students/133.apsx ).  I have been able to  
find little which is helpful other than some general  
guidance/principles. For example, carers should not make clincial  
judgments and should not work unsupervised with clincially unstable  
children.  However, it seems health authorities do not seem to be  
complying with this guidance.  There also seems to be a question mark  
as to whether the carers working in such circumstances are covered by  
professional indeminity insurance.
I have also been involved with various bodies who have expressed the  
view that proper guidance is needed, but a problem seems to be that  
medical professional want a set of rules/tick boxes, for example if 5  
criteria are met the individual will receive care.  However, the  
individuals in question are by nature highly complex and all very  
different so two individuals with the same number of ticks could be at  
two extremes (but this is perhaps true of any situation where tick  
boxes are used to assess unique individuals).

A fundamental related issue is clearly resource allocation and it does  
seem some health authorities are "deliberately" understating  
individual children's health care needs ( for example describing a boy  
who has had nursing care since birth (now 10 years old) with a  
trachestomy, uncontrolled seizures, daily hypothermia, oxygen  
dependant, repeated respiratory infections who does not produce  
cortisol and had muliptle other life threatening health problems, as  
having "just the normal childhood illnesses" in a report written to  
justify the withdraw of his nursing care)

I would certainly also be interested to hear of any research anyone  
knows off already or to be involved if others want to research the  
issue further.  A multi-disciplinary approach which includes a range  
of perspectives including the law would in my view be helpful.

All the best

Zoe Picton-Howell

Quoting Matt Buckley <[log in to unmask]>:

> Hello all, I am new to this list, so I am looking for any   
> information pertaining to any assessment out there to assist in the   
> evaluation of a consumers readiness  to manage personal care   
> attendant's. Does anyone know of such an assessment? Would anyone be  
>  interested in perusing this project with me, if there is not  
> already  something out there.
>                                                          Thanks,   
> Matt Buckley, M.Ed.,CRC
>
> ________________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 list administration should be sent to   
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>
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>
>



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Scotland, with registration number SC005336.

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