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.
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