As a parent carer of my 32 year old daughter, Erica
I have just spent two week trying to understand DOLS and whether or not this applies to her. Erica
has profound and multiple impairments plus complex health needs. In practical terms this means that Erica
cannot walk around on her own, she does not use language or any other
conventional system of communication. She requires assistance with all her
routine tasks (washing, dressing etc) plus she has various clinical procedures
which are part of her daily routine and keep her alive. She lives at home, but
goes into a residential setting for her ‘respite’. Her services are 100% funded
by continuing health care.
So why have I started on this quest for knowledge?
A few months ago I mentioned to a health professional that I seemed to be
having problems whenever I tried to contact Erica’s Care Co-ordinator – I was
told this was because he was busy doing assessments for Dols. I then started
hearing via the grapevine that local authority staff we spending 2 days a week
carrying out assessments for Dols and that all adults who had one-to-one
supervision would be assessed for a Dols. Many people said ‘that will include
Erica’. I thought that must be wrong as
I thought Dols were for people with challenging behaviour who were restricted
in some way by another person or organisation.
I then met another family with a son who has very
similar impairments to Erica – the main difference being that he lives half the
week in a nursing home and half the week at home. He has been assessed for a
Dols. I was now into the world of
reality rather than rumour - so I decided to fill the gaps in my
knowledge. I started with the SCIE
factsheet – that states Dols only apply if a person is in a hospital or care
home. But because I remained concerned
that I was being told that my daughter would be assessed I continued my quest
for understanding.
I contacted Steve an ex-colleague who is a
barrister practicing in the disability field (@SteveBroach) and he sent me the
legal information that I was missing.
One of the most helpful pieces of information being a blog by Lucy
Series:
Lucy Series writes about the ‘acid test’ which is
simply ‘is the person subject to continuous supervision and control, and are
they free to leave?’ If this is the case then that person is deprived of their
liberty. This set me thinking – what is supervision? My daughter has one to one staff for all her
waking time (apart from when she is in respite) – but is that supervision or is
their role to enable her to access the world around her and carry out the
health tasks that keep her alive. In other words, my daughter’s staff enable
her to have greater freedom rather than restrict her ‘liberty’ – so I came down
on the side of ‘enabler’ rather than ‘supervisor’ – perhaps I am being
naive.
However, I am still left with the issue – that
whilst we are not stopping my daughter leaving home or anywhere else for that
matter – she cannot leave. She cannot
leave because her impairments are such that she is not ‘able’ to leave. Thus
she is deprived of her liberty by her ‘impairments’ rather than a person or
agency.
Erica lives at home and from my reading of the
court rulings and the law this will mean that however the local authority
define ‘supervision’ she will not be assessed for a Dols. The only fly in the
ointment is that she has regular respite in a residential setting, although she
does not have one-to-one supervision whilst there – does this mean she will be
assessed, although I am sure she will be at the bottom of the priority list.
Whenever I discuss the issue with my husband his
question is always – does it matter? If Erica is assessed for a Dols will that
impact on her life in any way? I don’t
know the answer to that question. I cannot find information written for
families on the impact that a Dols will have on the life of the disabled person
and on their family. If there is guidance for families hopefully someone will
let me know – otherwise definitely ‘a gap in the market’.
Having journeyed down this route of knowledge I am
left thinking – how have we managed to create a response which the system (both
local authorities and courts) now does not seem to have the capacity to deal
with. I read the statistics on the
increase in the number of Dols applications in this last year. Whilst I don’t want to minimise the need to
protect the right to liberty for vulnerable people – my local authority (and I
am sure they are not the only ones) seem to be creaking under the sudden
expansion of workload – and other aspects of their role are being neglected –
thus leaving other vulnerable people more vulnerable. Was there not a more sensible and reasonable
approach to responding to the need to protect ‘liberty’? Have other local authorities taken a more
measured approach or found money to draft in more staff? Once again I write as
a parent carer – my expertise is as a carer and not as a lawyer.
Comments or contact via Twitter would be welcomed.
