For many of us in conductive education, our fundamental purpose is that children and young people with motor disorders become independent adults as active citizens. My daughter Sarah lives independently in the community in a supported living arrangement along with two of her friends. She accesses adult and continuing conductive education thanks to Paces. It is a wholly successful arrangement that has enabled her to grow and mature as a person.
You may not be familiar with DoLS - the Deprivation of Liberty Safeguards - so it's odds on that neither are you familiar with Lady Hale and her famous 'acid test'. You may well not be aware of Steven Neary and his Dad Mark Neary, though I do recommend reading Mark's blog if you want to know what it's like to be a parent of an adult with a disability and the consequent struggle to secure a good life for your adult son or daughter. Most of what follows comes from Mark's blogpost on Thursday this week "Lady Hale Comes to Cowley".
"DoLS had only applied to people who lacked capacity and were in a care home or a hospital. The acid test extended the scope of the safeguards to, among other things, supported living and crucially in our case, people living in their own home."
"As I wrote last week there isn’t one minute of one day as I watch Steven living his life in his own home that I consider he is being deprived of his liberty."
I feel the same about Sarah. More than that, living in her own home with her two friends has broadened her world and given her the opportunity to grow as an adult person that we hardly imagined possible. As Mark says of Steven, the idea that Sarah living in her own home is somehow deprived of her liberty "is beyond ludicrous."
And yet, "Today, Steven had his Community Deprivation of Liberty Safeguards Assessment." And "Yes - Steven is being deprived of his liberty in the [the house he calls home]."
"Why?"
"The first part of the acid test is: Is the person free to leave on their own?" Like Steven, Sarah is assessed as needing carers for her own safety and for her to live independently. Like Steven, she has never asked to go out on her own, alone. But that, as Mark says, "is neither here nor there". Is Sarah free to leave on her own? The box that gets ticked is "No".
"The other part of the acid test is: Is the person under constant supervision?" As Mark points out, the language of a DoLS assessment is very different from the language of a Care Plan. Critically, for instance, "support" (care plan) becomes "supervision" (community DoLS assessment). Sarah, like Steven, doesn't need "supervision" in any ordinary meaning of the word that I understand. However, in order to determine if the person is under "constant supervision" some of the factors are:
Help with some aspects of personal care.
Help with changing the settings on the TV from TV to DVD.
Help with cooking a meat and two veg meal.
Help with doing the online weekly shop.
Help with reading letters.
Help with dialing the number on the phone to arrange his transport.
To achieve her greatest possible independent life in her own home and as an active citizen, Sarah needs help with all such things. But for Sarah, as for Steven, as Mark says "All those things amount to Steven being deprived of his liberty in his own home."
Again, as Mark says, "all this feels like a million miles from the Mental Capacity Act 2005, which was designed to be an enabling piece of legislation" - or for that matter, the direction and intent of other 'care' legislation, not to mention the UN Convention of the Rights of Persons with Disabilities.
Apparently the whole process costs some £400 an assessment and across the country potentially every adult living with support in their home will have to be assessed and, like Steven, most likely with the same outcome. Already it's being said that "some unscrupulous LAs are trying to pass the cost of that on to the person. Just imagine – you might have to pay £400 to authorise your own deprivation of liberty in your own home!"
"What happens next?" asks Mark, providing his own answer: "I get the paperwork as the Community DoLS equivalent to a Relevant Person Representative. I’ve forgotten the name of my new title but it certainly ain’t “Dad”. The social worker has “mountains” of paperwork to complete and then the whole lot will be sent off to the Court of Protection for authorisation."
"Oh, and in a year’s time we’ll do it all over again."
For most of the thousands of adults and families affected, like Steven and his Dad, Sarah and her family, this is a monstrous exercise in bureaucratic futility. Of course, you will be able to think of cases where an adult, living perhaps with parents or even in their own home may be so constrained as to be deprived of their liberty. Yet that is not the situation that Steven or Sarah find themselves in. But if Steven has been assessed as "being deprived of his liberty" in his own home, what expectation can Sarah's Mum and I have that Sarah's assessment will produce any different outcome?
Paces' first 'Mission Statement' was "Supporting families supporting children and young people with disabilities into independent adulthood as active citizens ....". There will be children who first come to Paces School who, like Sarah, will benefit most from adult and continuing conductive education throughout their lives. For these children and their parents, as a Trustee, a Community DoLS Assessment process which threatens Sarah and her housemates with the same outcome as Steven, that living an independent adulthood as an active citizen deprives her of her liberty, should be a source of grave concern.
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Note 1: If you would like to read more on this in addition to the links above, a good starting point would be another blog post by Mark Neary a few days before Steven's Assessment: "The Day Cowley Became a Gilded Cage".
This legal opinion may also be worth reading: "A gilded cage is still a gilded cage - the Supreme Court define deprivation of liberty" (the quotation is from Lady Hale). This legal opinion concludes: "The implications of this judgment for local authorities, NHS bodies and private sector providers of health and social care will be enormous".
For a more detailed consideration of this impact see the same legal firm's "All Dolled Up? Deprivation of Liberty in Practice" Nothing in this legal opinion, nor in the Supreme Court judgement nor in the Department of Health Guidance (below) has anything to say about the impact on family life, on families, on Dads and Mums. For that, you will need Mark Neary.
Note 2: Department of Health Guidance: 22 October 2015: Background to the Supreme Court judgement:
"6. The Supreme Court also held that a deprivation of liberty can occur in community and domestic settings where the State is responsible for imposing such arrangements. This will include a placement in a supported living arrangement. Hence, where there is, or is likely to be, a deprivation of liberty in such settings, this should be authorised by the Court of Protection."
The practical implications of the Supreme Court ruling is a tenfold rise in the number of DoLS applications:
"8. In 2013/14 (the year prior to the judgment) there were approximately 13,700 applications. In 2014/15 (the year following the judgment) there were 137,540. Of these, 62,645 applications were completed by local authorities during the year, almost five times as many as in 2013-14."
You might think that the drain on scarce public resources, in staff time and money, at a time of cut-backs in care funding by local authorities and central government borders on the unforgivable. At the very least, it might lead you to think of the efficacy of sledgehammers in the cracking of nuts - and of the gilded cage that can be the Supreme Court.