Autism and Deprivation of Liberty: The Shocking Tale of What the State is Doing

Deprivation of Liberty 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:

It’s interesting that the following article states:

http://www.theguardian.com/society/2014/aug/05/councils-struggle-deprivation-liberty-tenfold-rise-mentally-vulnerable-patients

“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:

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.Gagging OrderAbusing 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: office.ofthechiefsocialworker@education.gsi.gov.ukDr Maggie Atkinson is the children’s commissioner for the UK and can be contacted here: info.request@childrenscommissioner.gsi.gov.uk.  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…

Speak Out

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8 thoughts on “Autism and Deprivation of Liberty: The Shocking Tale of What the State is Doing

  1. Please read my blog,’ Life with my severely autistic daugther’, by googling finolamoss .Particularly the posts ‘gathering evidence from social care’- describing how care workers in my house did this, and are trained to distort for deprivation of liberty orders, to enable enforced, secret independent living and medication, with family excluded.

    Also read post Ripped off disability care and education. Billions are being made, and set to be made, from autistic cashcows under the MCA 05.

    The House of Lords select committee have stated that the MCA is not doing what parliament intended, but is it,?
    It is, if the intention was to remove autistics from society, and their family and make a fortune out of them for privatr corporations and venture captitalists.

    There is a huge conflict of interests. The worse the social care, the more likely the autistic will be distressed, and incapable under the Act, and it be in their best interests to remove from home and family to encagement.

    This is abuse of your taxes and human rights. Education Acts Carers Acts and more importantly our most vulnerable.

    Read my blog and take action

      • Thank you for sending link to NICE guidelines, review and consultation docs on control of drugs in care homes.

        As with all such government information, it is often difficult to see the wood for the trees. They do not appear to show the following crucial control
        In any event, do Independent living units, provision come under the definition of care homes ?
        I think not ?

        Even if they did, these consultations, guidelines etc do not appear to regulate the actual amount of prescriptions, and use of drugs given to those in these homes, and, as far as I am aware, no central record of this is kept, let alone monitored.

        I know from Hansard, this was the position in 2010. But would be interested to know if this still were the case, particularly as, at that time several yellow cards had been flagged up for the large number of learning disability autistic asperger people, who had died directly from the use of such drugs. See my NLJ article Disability Trap .

        The amount and use of these drugs being apparently left to the discretion of individual GPs, CAMHs psychiatrists

        Whilst quality documents of CAMHS residential assessment centres, show that refused medical examinations are as high as 50%, I also wonder how these patients, are then deemed fit, to be given, as they are being long term and present prescriptions for antipsyhotics like respiridone, particularly as these are enforced, through lack of capacity of the patient

        The huge cost to the NHS for these drugs was also highlighted in Hansard by LIAM BYRNE in2009/10, and I can only assume this has increased for mental health treatment, whilst in 2010r GPs were advised not to use on Alzheimer, dementia patients.
        .
        This unmonitored drug use must contribute to the 3 a day needless deaths of the mentally disordered and disabled, that the government review has disclosed, which they as yet, appear to have done nothing about.

        And amazingly, in view of the huge number of deaths, which are continuing, there is also nothing in the media.

  2. Forgot to mention, a recent government report states that 3 people a day with learning disabilties,, die needlessly per day in social care.

    Yet nothing is being done about it.

    There are no spy cameras in independent living units. And autistics cannot communicate what is happening to them, and even if they could, they would not be believed.

    My daughter has PTSD, repeating over and over again, the abusive comments made to her by her NAS enforced residential school care workers, like ‘you can’t live with your f… in // family. f,,in idiot, stop asking your fin questions.

    I listed and recorded these, and all Safeguarding officers, indep reviewing, social workers et al said she could have picked them up in the street when she has never been out and then from TV.

    Worse still CAMHS said they were voices she was hearing, as did her then Social Worker, to justify a stay in a CAMHS assessment centre with an IQ requirement of under 50, she has been assessed at over 100, and enforced anti psychotic medication. This would have exascerbated her faecal impaction and her two rotten teeth which had to be extracted and alone with the workers abuse was the reason for her attacking behaviour.slowing with pooh

    If she had gone for this assessment , all these matters would have been left untreated , she would have been zombiefied, and returned to her NAS residential school , not even able to scream her agony, filled up .slowly with pooh, and eventually have died the most horrible of deaths. And we would be yet another parent, fighting for an inquest . And she would be one of the 3 that die today.

    Her 48 BRUISES from one restraint in her NAS school were similarly white wasjhed by all as self harm

    She has had two huge faecal impaction untreated by the state- 2 adults died of such in a Mental hospital last year. Again I screamed to everyone to have them treated and they were not until poor Issy refused to go back to her enforced school placement at 16, too old for a care order enforcement to send her back, and exclude her family.

    So at 18 they can as we lose all rights over her And do this to her again…

    They can do anything to these people and it appears claim a fortune for doing it.

  3. It is also important to note, that the Court of Protection Judges in the press last year, complained on the increase of 60 % in applications under the MCA, that their case loads were unmanageable.

    I can only assume, they still are. Which means expediency can but only force them, to almost rubber stamp the LA’s applications.

    And albeit it will be blamed on cost cutting,, this is the result the government intended..

  4. I think it’s at least helpful to peoples’ cases where they can quote laws and regulations that support them in getting things like medication reviewed. You might be interested in this letter recently sent to the Government:

    Jan Loxley-Blount
    Parents Protecting Children UK

    Wednesday 3 September 2014
    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.

    Dear Sirs,

    We are writing in the wake of the much publicised story of the family of Ashya King, who found themselves under legal attack for challenging the medical establishment over the care and treatment of their seriously ill son. It seems that they were threatened with draconian child protective measures and that this, as well as their desire to get their son to the Czech Republic for treatment, precipitated their decision to flee to Spain. We are delighted that this family are now reunited. Our hopes and prayers are with the family as they strive for Ashya’s recovery.

    However we wanted to alert you to the fact that this case is merely the tip of a terrifyingly large iceberg of cases, in which families, who challenge certain medical personnel, are vilified and victimised and find themselves subjected to unnecessary and unwarranted child protective interventions. These actions are not benign and usually cause serious harm to children and their families, as has happened to the Kings.

    The processes are frequently blinkered and insensitive, producing the wrong result which sometimes includes the removal of a child with illness or disability to state care or adoption, when the families should have been listened to and supported in staying together. Chronically sick and disabled children do not have good outcomes in state care. Placements frequently break down when adoptive parents find themselves as Carers of a child with additional needs.

    Recent moves towards interagency working are creating situations where more people are working beyond their sphere and level of competence and making tragic errors of judgement. At particular risk are families with difficult to diagnose, genetic, familial and multi-generational conditions, in which parents may be struggling with their own health or neurological difficulties, as well as coping with the immense medical, educational or socialisation problems of their child.

    Families who are particularly at risk are those with:
    *Autism Spectrum Difficulties & Differences affecting educational and social functioning.
    *Collagen deficiency conditions such as Osteogenesis Imperfecta, Ehlers Danlos Syndrome and Marfan Syndrome, giving rise to other conditions including brittle bones and Postural Orthostatic Tachycardia.
    *Other rare genetic disorders and deletions including 22q11.2 deletion / DiGeorge Syndrome which causes multiple symptoms including heart defects.
    *Children who develop Myalgic Encephalopathy (ME/CFS) which is recognised as one of the main causes of long term school absence but is frequently misunderstood.
    *Pregnant women who challenge the care on offer, or who exercise their right to choose how and where to give birth.
    *Children with vitamin D deficiency which can result from lack of sunlight, milk intolerance or genetic disorders with consequences including broken bones and symptoms of Rickets.
    *Parents who request second medical opinions from another clinician or hospital.
    *Parents who ask for their seriously ill child to be moved to somewhere providing a higher level of treatment eg to a leading UK heart unit or for cancer care abroad
    *Those who have put complaints into hospitals in relation to their child’s care.
    *Those who choose to home educate (often because of Local Authority failure to provide or implement a Statement of Special Educational Need).

    It is frequently difficult to get proper diagnosis and desperate parents find themselves scorned and accused of Fabricating or Inducing Illness in their child, merely for asking for further investigation of their child’s difficulties. Numerous families are threatened with Child Protection proceedings and a number find themselves in court, if they won’t comply with medical and social care plans, which from the parents point of view, appear not to be in the best interests of their child.

    These situations can arise when medical, educational and social services personnel have insufficient or no knowledge of these conditions and illnesses and of the consequent stresses on all aspects of family life – living with a sick or disabled child is not easy. Misunderstandings can occur because clinicians are not always good at listening to or reassuring frightened parents.

    The 26 week rule for procedures in the Family Court is causing additional difficulties, as local authorities seek to meet targets by taking things further before moving matters into the justice system. This frequently means that, to the detriment of many families, independent scrutiny is denied until a very late stage in the proceedings. What is of note is the failure by child protection teams to implement the guidance on genetic tests issued by the GMC in January 2013.

    A couple of weeks ago the Prime Minister said that there is a need to check that systems put in place to support children are working properly – it is clear that for families with illness and or disability, there are a frightening number of cases where supposedly child protective measures are going tragically wrong.

    Parents Protecting Children UK has some raw research data which appears to confirm this view. There is a proposed in depth research project by Dr Clive Baldwin, Professor of Social Work, St Thomas University, Canada, to build on this preliminary data. Other organisations and individuals, including those listed below have their own research data and observations, which they would be happy to share with government.

    We recommend that you discuss this matter with Earl Howe who, when in opposition, did considerable research in this area and knows most of the people on the list below. He notably described the condition of families with illness and disability who find themselves at odds with the statutory agencies as a “parallel universe”. He and Lord Clement-Jones requested a parliamentary enquiry which has never been undertaken.

    Please also contact John Hemming MP and his organisation Justice for Families, who have considerable expert knowledge and experience in this area and have helped many families. The Family Rights Group also have relevant experience. You may also wish to talk to the Countess of Mar, Baroness Williams of Crosby, Lord Clement-Jones, Rt Hon Dr Liam Fox MP, Rt Hon Dominic Grieve QC MP, Rt Hon Caroline Spelman MP, Timothy Loughton MP, Claire Curtis Thomas former MP, and several others parliamentarians who have some background knowledge in this area.

    This letter comes with the support and involvement of several organisations and individuals with experience, knowledge and concern in this area. With more time this list could be much more extensive, but speed seemed imperative. Those who have agreed today that their names should be included here are:

    Parents Protecting Children UK – Jan Loxley Blount, Charles Pragnell & Revd John Alan Cox
    Parents Against Injustice Network – Trevor Jones & Alison Jane Stevens
    False Allegations Support Organisation – Margaret Gardener
    AIMS – Association for Improvements in the Maternity Services – Beverley Beech
    The Five Percenters – Rioch Edwards Brown
    Forward-ME – Countess of Mar
    Tymes Trust – Jane Colby
    AYME – Association for Young People with ME – Mary-Jane Willows
    Autism Women Matter – Monique Blakemore
    Education Equality – Evelyn Ashford
    PAFAA with SOFAP – Helga Speck
    Professor Dr Clive Baldwin (St Thomas University, Canada)
    Dr Lynne Wrennall (Liverpool John Moore’s University)
    Peter Dale & Associates – Dr Peter Dale Independant Social Worker
    Carolyn Canavan MEd – Writer on Autism (LiterAuti)
    Fiona Woollard – Support Worker for families with DiGeorge Syndrome & related difficulties,

    We look forward to an early opportunity for knowledgeable individuals and representatives of the organisations listed above to meet with you to discuss these urgent matters.

    Very Best Wishes, Yours sincerely,

    Jan Loxley Blount TCert, TCert., Dip Child Development.
    parentsprotectingchildren@live.co.uk https://www.facebook.com/PPPC.UK

    • I am not asking to get medication reviewed.

      I am stating, that individual GPs, CAMHS, appear to be able to prescribe, and enforce drugs, on those in their care, without checks on the amount prescribed, or medical examination if refused by the autistic.

      We have the nonsense, that a restraint can’t be made to examine autistics, yet a hugely greater invasion can be made by enforced medication with no checks.

      Thank you for letter, but I think we will need a lot more to change this modus operandi of the state..

      Our governments and previous one, has always been to enforce whatever care, medical treatment and education upon us, no matter what the detriment to us, or quality of service via care orders and now MCA orders

      We have no choice, and no effectively enforceable rights

      The enforcement is done in secret, nothing can be published, all are gagged, under laws which are totally skewed towards state, courts rubber stamp NHS, and LA decisions. 80 % of care applications are successful, and I imagine applications for deprivation of liberty by LA’s even higher

      Families are terrified of losing their children/relatives/ parents, so will not campaign, complain or even put their names to petitions

      This is fear UK, for what ? To make money for NHS, Care and Fostering, and now independent living industries.. .

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