The Government created an Autism Act in 2009 for adults on the autistic spectrum. Then it created an adults Autism Strategy (ironically entitled “Leading Fulfilling and Rewarding Lives”) in 2010, to remind authorities that there was an Autism Act and that they were meant to be adhering to it – just spelling it out sort of thing. When people kept on reporting that things still weren’t being done as they were supposed to, despite the Act and the Strategy, the Government next created their “Think Autism” Strategy in 2014 just to remind them again (just how dense can these people be!). What is all this achieving? The Government can hold it’s hands up and say, “Look, we made a law for you, we did our bit, look how seriously we are taking this.” …We all know what the term ‘lip service’ means though.
Some autistic adults are getting deflected when they seek referral for assessment via their GP, some are misdiagnosed in mental health services and pumped full of medication and then some that do get assessed for ASC are told “not enough traits for a diagnosis”. You see, organisations love loopholes: loopholes let you avoid putting your hand in your pocket. High-functioning adults don’t usually get any support even when they are diagnosed (and those that do, it’s not obtained without a fight). Whereas lower-functioning autistic adults that may be unable to learn self-care, may be non-verbal, may have challenging behaviours and other difficulties, are much likelier to get interventions, but have something else to fear: the state taking over their lives totally. The Autism Act is meant to protect and ensure the rights of all autistic adults, no matter their level of functioning – so that’s two big fails right there. The Autism Strategy (backed up by statutory NHS NICE Guidelines) also states that all autistic adults must be provided with an ‘autism care pathway’. This can include health professionals, housing, social care and any other discipline that needs to be involved. After all, the Government created the Leading Fulfilling and Rewarding Lives Strategy specifically for autistic adults – and that means irrespective of their level of functioning. How did we get to the options being pretty much, either zero support or total removal of control? What does removal of control actually mean? It means deprivation of liberty. How is it in this day and age, in a supposedly cultured 21st century society, we are locking away autistic adults?
Misuse of the Mental Capacity Act 2005 (MCA) is prevalent, festering away under the surface of this supposedly enlightened society, with it’s legislation and laws. There is a Code of Practice for the MCA, but like the Autism Act and the Autism Strategy, no-one is listening. Who is policing this? Nobody of course. Corruption exists in the state, we all know that, it’s a very harsh fact of life – shouldn’t happen but it does. But when vulnerable people are having their lives destroyed, people have to rise up against it. The House of Lords has found that DoLs are being abused and the MCA is unfit for purpose, in March of this year. Here are just a small handful of representative stories where autistic adults have been, or are due to be, deprived of their liberty:
- Isobel Moss – 17 year old autistic girl (soon to be 18) from Sheffield (threatened with illegal deprivation of liberty imminently following a catalogue of state abuse)
- “P” – 19 year old autistic woman from Somerset (illegally deprived of liberty for 14 months)
- Steven Neary – 21 year old autistic man from Hillingdon, London (illegally deprived of liberty for almost a year)
It’s interesting that the following article states:
“Local authorities are struggling to cope with a tenfold increase in assessments of mentally vulnerable patients when hospitals or care homes want to deprive them of their liberty. A court ruling in March, increasing the number of patients protected under the Mental Capacity Act deprivation of liberty safeguards (DoLS), has seen assessments soar from just over 10,000 last year, to a predicted 94,000 this year, according to the Association of Directors of Social Services.”
Could this mean the motive is financial rather than the wellbeing of the person? Of course, it’s not only autistic people this is happening to. As in my previous blog post on state abuse, people with other invisible disabilities such as CFS/ME and connective tissue disorders such as Ehlers Danlos Syndrome are suffering this outcome too. It’s almost undoubtedly happening to people with challenging behaviour, learning disabilities and mental health conditions which are being mismanaged by the state, resulting in difficulties for the individual which are more expeditious for the state to deal with that way. Conditions that are not understood, or are fobbed off as ‘all in the mind’ or the fault of parents, are misrepresented as psychiatric conditions upon which the state will act as they see fit, often irrespective of evidence and facts to the contrary. The system has a rotten core, or at the very least, is being manipulated for their own purposes by those who work within it. But the system as it exists, closes down complaints, different regulatory organisations state “we do not investigate individual cases”, so where is recourse for people fighting for the rights of their loved ones? If you are the parent of an autistic child who needs ongoing support and care, when that child reaches 18 you currently have no rights whatsoever. The NAS will attest to this fact: http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future/parents-of-adults-with-autism-your-rights.aspx
The trouble lies further with the secret courts, judges can be persuaded with cherry-picked and misrepresentative evidence, presented by local authorities. Local authorities can pay psychiatrists to say what they need them to say. I don’t pretend to know the whole shebang, but just what I have found out in the last few weeks, including the story of Isobel Moss (first link above) in the last couple of days, tells me there may well be a gravy train involved. Anything can be got round by claiming that it is “not in the best interests” of the individual (the term ‘wide discretionary powers’ springs to mind here), incorrect professional opinions will go unchallenged and social services can manipulate and lie regarding parenting of the individual to make a case for the person to be deprived of their liberty. This often means parental contact will be prevented. So then who acts in the individual’s best interests or ensures that those interests are being upheld on a continued basis? The parent has no say in whether their child is medicated and the health impact of side-effects of any medication unattended to, institutional abuse can be blamed on self-harm and that person is reduced to a shadow of what they could have been, with the right interventions and support (again, see Isobel Moss’s story). Autism can bring challenging behaviour, but this doesn’t mean someone is mentally ill or lacking capacity. Their behaviour could be due to illness, pain or sensory issues – and dare I say it, unhappiness in the environment the state has put them in. So the state’s usual answer is to drug them up some more to make them compliant. Quite apart from lives destroyed, deaths have occurred because of state interventions, so this cannot get any more serious:
- Mark Bailey, autistic man, 40, died from choking in Staffordshire care home after forced removal from parents
- Connor Sparrowhawk, autistic man, 18, died from drowing in the bath at Oxford care home
- Christopher Wakeman, autistic man, 23, died after escaping from Kent home and falling (escaping due to unhappiness in the home perhaps?)
When you know that vulnerable people are suffering this sort of abuse in care homes, you know how urgent it is that this injustice stops immediately: http://www.dailymail.co.uk/news/article-2793220/more-100-000-abused-carers-year-cases-led-46-deaths.html
The Government must do something about abuse of, and breaking of, those laws which are meant to protect people, not imprison them. Secret courts need to come out of the shadows and provide transparency. Gagging orders help no-one except to protect miscarriages of justice from being revealed, authorities that really are acting in the best interests of individuals will have nothing to hide.Abusing individuals’ rights regarding medication, restraint, forcible removal, forced adoptions, deprivation of liberty, state abuse and the rights of those that care for and love them is wrong, inhumane and has no place in a civilized society. Everyone has the right to a voice, and for some, that means having someone speak for them, but that someone must be someone that disregards what is the easiest option for others and does not revolve around financial incentives or keeping people in business for the sake of it. There are people who are considered low-functioning autistic, and in the wrong hands they could have had a different outcome than they were lucky enough to have. Read the story of Carly Fleischmann, who despite being non-verbal and having behavioural problems is an articulate and intelligent young autistic woman who surprised everyone. See the video about Carly: http://www.youtube.com/watch?v=34xoYwLNpvw, imagine if she had been viewed as lacking capacity – which she could so easily have been, and been forcibly removed, medicated and deprived of her liberty?
If anyone is in this position with a loved one – whether it be forced adoption (whistleblower ex-SW on that link), deprivation of liberty or any other form of state abuse, please contact Jan Loxley-Blount of Parents Protecting Children. Jan along with several organisations and professionals, wrote to the Government (Right Hon David Cameron MP – Prime Minister, Right Hon Nick Clegg MP – Deputy Prime Minister, Right Hon Ed Miliband MP – Leader of HM Opposition, Right Hon Jeremy Hunt MP – Secretary of State for Health , Earl Howe – Parliamentary Under-Secretary of State, Department of Health) on 3rd September 2014, detailing the nature of the issue and calling for a meeting. Let’s hope this is taken seriously. You can also contact Isabelle Trowler the UK head SW for children or Lyn Romeo the UK head SW for adults, here: email@example.com. Dr Maggie Atkinson is the children’s commissioner for the UK and can be contacted here: firstname.lastname@example.org. If your loved one has had a deprivation of liberty order, the NAS has a page of information and there is a lot of helpful and relevant information regarding deprivation of liberty on the Alzheimer’s Society page which includes information on reviews of DOL decisions and helpful links. You can obtain free legal advice about human rights here: http://lawworks.org.uk/?cID=10916 Don’t wait until it becomes too difficult to challenge decisions, usually there is a 12 month limit on complaints and appeals. And remember…