‘Just off the coast of Autonomy, across the Bay of Good Intentions, lies the fog shrouded Isle of Best Interests’.
If you have arrived at this blog today looked for cheer and sympathy for your woes – snow bound, central heating boiler broken down, redundancy imminent, then I am sorry for you – but you would be better off elsewhere.
My post today concerns a young man who needs our help and support.
Steven Neary is a 20 year old man with Autism trapped in a Kafkaesque nightmare.
It is a story that should be trumpeted from the front page of every main stream newspaper – but it won’t be. They will keep silent.
Autism is a ‘broad’ word, describing a wide spectrum of conditions with defining characteristics involving a difficulty in communicating with other people, and a restricted range of activities and interests. It can range from the mild to the profound. It is most definitely NOT a mental illness.
Some of those on the milder end of the Autistic spectrum are able to operate in ‘our’ world with relative ease, by choosing occupations such as computer programming where the ability to concentrate on repetitive tasks and not to be distracted by idle chatter is highly prized – almost certainly the software that allows you to read this post involved people who might be diagnosed as ‘Autistic’ – many of our greatest composers and artistes have been autistic so it is a mistake to see the condition as an entirely negative attribute.
Some autistic individuals suffer from an inability to empathise – to see their actions as other ‘might’ see them. They only see their own factual intention in those actions.
It follows, therefore, that those with autism find it easier to function in a familiar environment, where those who surround them can take an understanding view of their actions and utterances.
Steven lived in such an environment, with his single parent Father, Mark Neary. One story will serve to illustrate the value of Mark’s long expertise in understanding Steven’s unique thought process.
Together they watched an episode of Mr Bean, where Mr Bean put the Christmas Turkey on his head. They both laughed. Steven likes to see his Father laugh. He promptly disappeared to the kitchen, and his Father figured out his probable pattern of thinking just in time to prevent the family’s freshly roasted Christmas Turkey being forced over his head….Steven certainly couldn’t live alone without support.
Finding himself in a situation where others ‘misconstrue’ his actions makes Steven agitated and frustrated, for he can’t express himself or understand that there might be more than one interpretation of his actions.
One cold winter’s day, Steven’s father succumbed to the flu. Genuine flu – you don’t suffer from ‘Man Flu’ when you are a full time single parent carer. He rang his local authority’s respite centre, where Steven had been once before, to ask if they could look after him for three days. They could.
At the end of that first day in respite, despite the fact that Steven had been there many times before, the staff felt themselves ‘unable to cope with Stephen’. He was aware that his Father was ill and upset at being separated from him. The respite centre transferred him to the ominously named ‘Positive Behaviour Unit’.
Now the Positive Behaviour Unit is a mighty politically correct place. Tap someone on the shoulder to attract their attention, and they don’t think ‘that is how Steven has always attracted my attention since he was a child’ – they say – ‘he touched me, that is an assault’ and promptly record it in their daily log…..
When Steven’s Father went to collect him after three days, they had logged many such ‘assaults’ – and announced that they were retaining Steven for ‘assessment’. No! His Father couldn’t take him home.
There is no danger of Steven being ‘sectioned’ under the Mental Health Act, for Autism is not a mental illness and not covered by that Act.
However, there is another, newer piece of legislation which does cover those who ‘may be at risk of harming themselves’. It is known in shorthand as DOLs. Deprivation of Liberty Safeguards. It applies to hospitals and care homes and describes the circumstances under which they can – not ‘lock someone up’, for that is the province of the Mental Health Act – but turn the key in the lock and not give that key to someone ‘in their best interests’……it is a fine piece of legalese that may leave you baffled.
The ‘best interests’ requirement:
(1) The relevant person meets the best interests requirement if all of the following conditions are met.
(2)The first condition is that the relevant person is, or is to be, a detained resident.
(3)The second condition is that it is in the best interests of the relevant person for him to be a detained resident.
(4)The third condition is that, in order to prevent harm to the relevant person, it is necessary for him to be a detained resident.
(5)The fourth condition is that it is a proportionate response to—(a)the likelihood of the relevant person suffering harm, and(b)the seriousness of that harm, for him to be a detained resident.
It certainly left Steven baffled, for he could no more get through that locked door than if he had been ‘locked up’ under the Mental Health Act.
The longer they kept Steven behind that locked door, away from his Father, the more upset he became, the more people he tapped on the shoulder to ask when he might be allowed home again…..eventually the ‘Positive Behaviour Unit’ had logged 306 such incidents over a seven month period, and decided that Steven’s behaviour was ‘so challenging’ that he could never be allowed to return home.
Despite the fact that by this time the unhappy Steven had been assessed as ‘extremely challenging’ – too ‘dangerous’ to be returned to his Fathers care, Steven, unattended by these ‘professional behaviour managers’ managed to slip out of the Unit, in his pyjamas, and attempted to return home. During the course of this futile flight, he met up with a Vicar – and according to one report, removed his glasses ‘aggressively’. The authorities are unable to even name the Vicar, far less file a report from him.
Now comes the interesting bit – thank-you for reading this far!
Whilst Steven lived happily at home, he had the support of professional carers from the ‘Trinity Noir’ company. Steven’s father was very happy with the level of support and had no complaints. The Local Authority footed the bill, as is their legal duty. Changing Steven’s diagnosis from “autism, severe learning difficulties and challenging behaviour”, to “extreme challenging behaviour, learning difficulties and possible autistic spectrum disorder” may seem hair splitting to my readers, but on such finite definitions rest the liability to pay for Steven.
The new diagnosis could shift the responsibility for care onto the NHS Primary Care Trust…..the current suggestion is that Steven is ‘sent to a care home in Wales’, many miles from his home in London, who will ‘assess the reasons behind his behaviour’ – I would think most of my readers will have figured out for themselves by now the reasons for his behaviour. He wants to go home! His Father wants him to go home!
Those of you with a modicum of legal knowledge will be saying ‘but surely he can get legal representation and go before the mental health tribunal – I’ve read about cases like that?’
No, he can’t, he has no access to the Mental Heath Tribunal – Autism isn’t a mental illness. This action isn’t being taken under the Mental Health Act – it is being taken under the Mental Capacity Act. Under the MCA he only has access to a ‘Best Interests Assessor’ – who is appointed on a consultancy basis, and paid, by…..the Local Authority.
He can be deprived of his liberty for up to a year, which period can be renewed indefinitely, for the purpose of ‘assessing’ him – see above – being sent to Wales to ‘assess’ why he is unhappy at being locked up.
The only Court to which he has access – purely for ‘appeal’ purposes, is our old friend, the secretive Court of Protection. Assuming that Steven can figure out how to make an application to the Court and represent himself….
As it happens, the Local Authority have already done that, not on Steven’s behalf, but on their own behalf. They wish to have a full ‘Welfare Deputyship’ so that there will be no awkward parent demanding the return of their child – and his support package. It will be their decision where he lives.
Remember, Steven only went into respite care for three days, that was last December. Almost a year ago to the day.
His distress at being parted from his Father has been treated as ‘challenging behaviour’. His attempts to escape have been treated as ‘a risk to himself and others’, including his Father. (The risk to others is no part of the Mental Capacity Act!)
After next week, no one will be able to write of Steven’s case. It will vanish behind the stone walls of the Court of Protection. Just one more file.
You can help by giving this case as much publicity as possible over the next few days.
You can sign the petition demanding he be returned to his family. (Currently 2,286 signatures).
You can write of Steven’s case on your own blog.
If you still have time to spare, might I suggest that you write to whichever Daily Newspaper you read and ask them why their pages are full of tittle tattle from illegally released diplomatic cables – and yet they can never find the space to illustrate true injustices happening to a British citizen right under their noses?
See the latest update: http://www.annaraccoon.com/annas-personal-stuff/politics/hurrah-for-common-sense/
Steven will be home for Christmas – it took a year, but Steven’s father won in the end!