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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
>
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