Isabel. And the horror of her Future ‘Care’.

Isabel is Isabel.

She has huge black eyes, dark curly hair and the prettiest of smiles. Her skin is silky white. Her voice soft. Her laugh mischievous. She screeches with joy and claps her hands when happy. She is dextrous and agile, never tripping, or dropping the several dishes/videos she efficiently tidies. She giggles as you fall over her quickly drawn out foot.

She loves watching people, particularly in Spain, and loves nothing more than being in a group she knows accept her on her terms, or better still simply ignore her. She likes to do things quickly, hates clutter, and loves walking, and being tickled.

Is hypersensitive to other people’s emotions, needs solitude, and understands more than we could ever know, and has a spooky sixth sense for nasty or fake people.

She is a pure soul, that is happiest when loved. Her hugs are freely given to those she likes, and are the warmest in the world.

But none of this matters, or is relevant.

To the state, she is whatever thy need her to be, and they are the experts.

Her CAMHS psychiatrist, stated, as an autistic, she could not form relationships, (very convenient for the state machine), her educational psychologist, refused to allow her to be described as ‘bright’, despite her tested IQ, being well over a 100, (very convenient for her SEN funding).

The state’s answer to her malnutrition, abuse, rotten teeth, faecal impaction, and depression in her residential school, was not a dentist, impaction removal, or change of abode, but, an expensive inpatient stay, to enforce anti- psychotic drugs, in a CAMHS assessment centre with an admission required IQ of less than 50.

Issy’s future state carers, will be an anonymous, ever changing, people service. The system would not need, or indeed allow them to know her. They will be a sea of itinerant, oppressed ,poorly paid, zero hour tools, in an impersonal, risk assessed, profit hungry machine, that will process Issy for every penny- housing benefit, government subsidies, disability allowance, special care allowance, educational packages, mobility allowance- all can be made available to her corporate carers in just 4 months, when she reaches 18.

And fortuitously, for the state, the worse her behaviour becomes, the more money they can claim to encage her, and as always, her behaviour can be blamed on her autism.

Issy’s birthdays were always tinged with sadness, no discos, no boyfriends, no exams, more judgement, but her eighteenth on the 17 th December will be the saddest.

As soon as that day dawns we can no longer legally make any decisions for her- even ring the doctor or dentist. All our parental rights disappear overnight.

Under the Mental Capacity Act, Issy can, and will be deemed ‘incapable’ of making her own decisions, and the state, not us, will make them for her.

Her valiant, persistent efforts to stay with her family, will have all been in vain- as will our care and love.

Process rules.

A social worker, known as a ‘best interests’ assessor, will assess the state’s interests, as those in Isabel’s best interests. But will ‘consult’ with us,  our social worker has already reassuring us, ‘We would let you know if we intended to remove Isabel’.

The Court of Protection then, in secret, with us gagged for life, will rubber stamp the social services ‘best interests’ decision.

Isabel will have an ‘independent’ mental health advocate, a stranger, preferred, to her parents, and paid indirectly by government. But they cannot be involved in any decision making process.

Her legal representation will be an Official Solicitor appointed and paid for by the state.

All will be a one way unstoppable cabal.

The judge no doubt, will convey similar sentiments to the judge in Northamptonshire NHS Trust v Another 2014,

I have been struck by how similar their concerns are to fears of every parent whose child leaves home on the first steps to independent living. The sheer normality of their reaction signals to me that ML like any other young man is entitled to the opportunity to fulfil his potential’.

This despite ML’s previous torture at the hands of the state, his parents, and his own wishes, his inability never to be allowed anywhere without two guards, let alone be ‘independent’, and no one having a clue, as to what was meant by his ‘potential’ .

Only a few months earlier, Northamptonshire NHS trust had been responsible for the horrific deaths of two young male autistic inpatients, from untreated facial impactions, force fed respiridone, constipation being a side effect, until their organs closed down.

Their agency care workers forced to watch.

One report in the Telegraph their only eulogy.

And still no statistics, or control on the GP use of such medication, despite NHS issuing yellow cards for autistic deaths from antipsychotics for years.

This sad young man, had been made subject to the latest, most costly ‘extinction theory’, subjecting him to things, he had an aversion to, his own everlasting Room 101, until an ‘extinction burst’, if ever achieved, unbelievably, ‘experts’ thought this would cure his aversions, despite his autism.

It did not work, and his parents had the horror of trying to undo the terrible state damage with their love and care at home, where he eventually improved.

Despite this state ‘care’, the judge sent him back for more of the same.

Soon, as with an increasing number of autistics, his teeth will be removed to stop him fighting back, and his ‘potential’ will have to be achieved in indescribable anguish, in a padded cell, ‘eating’ through a straw.

Issy’s fate may be similar, if she survives the respiridone, she has already suffered two untreated by the state impactions.

She will be removed to live in an ‘independent’ no choice 24/7 survellience living unit, usually one of the many flats lying vacant in our city centres.

Her social worker wanted to use it for respite, and I am suspicious conversations, and possibly a visit to a unit, may have triggered the big melt down in the city, which preceded her now 4 month refusal to go out.

Adult services already met with us in May, and filled up their forms, which despite its many ‘domains’, has none for medical care/existing conditions.

Officiously the  adult services social worker informed us, they do not pay for ‘specialist’ care.

Evidenced by the mixed disability line of backpacked walkers, one a wheel chaired autistic, with their chatting together care workers, I spotted going towards one of the city’s apartment blocks recently.

The adult social services manager proclaimed, ‘Well what do you want for Isabel in the future’,

Apparently the novel idea, of a disabled, vulnerable adult remaining with those who have known and loved her all her life and she them, rather than alone with strangers, could not be in that person’s ‘best interests’, as it wasn’t an option.

One of workers in the kitchen reassured me,

They will allow you to visit her’.

But how could anyone stand impotently by, watching their vulnerable, disabled daughter encaged, and tortured, wondering if every visit might be their last, as the self preservatory,  caring cabal, might deem such visits, not in their daugther’s ‘best interests’, as they upset her?

The frightening reality was, that the carers in the kitchen, would have the opportunity to spend more time with my daughter  than I would, and, the option.

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5 Comments

  1. Finola – heart breaking isn’t the right word, its far far beyond that. Agasin and again – God help us and our children (CHILDREN OF A LESSER GOD)

    Reply

  2. Thank you Shirley.

    There has never been such a modern day scandal, or, cause of such misery, and, illegality in this country, as the states implementation of the MCA.

    And, all done in the guise of increasing the disabled’s autonomy.

    The reason for the act, being to prevent others making decisions for those, who were capable of making them.

    It is quite impossible to believe, but it is true, and has been happening, as you of all people know, now for 10 years, ………………………………………………….

    Reply

  3. Finola, can you recommend me any studies or books on the implementation of the MCA over the last ten years? I want to know more about this. Thank you for writing this.

    Reply

    1. Sorry Shonagh, for not getting back sooner but missed your comment.

      I am afraid, after googling and looking in Amazon, there appears no decent book, which is not surprising, as the procedure under the MCA, is all supposedly inquisitorial’, but is anything but, and dealt with by local county court judges, designated by the court of protection out of London.

      It appears, few get to a final hearing, all is mainly ended in case management, such decisions now since last year, can only be appealed to High Court locally.

      Once they get the capacity assessment, which is needed to give the court jurisdiction, and then the LA Adult social services decide on a placement, and they draw up care plan and that effectively is the person sorted for life, if is unclear, but I don’t think those, in so called supported living like Thomas Rawnsley, and now all LD/autistic at 18, even, come under the new tick box DOLs procedure.

      I used the primary legislation ie MCA and Code for posts, and a small book MCA a pRACTICAL guide to MCA graham cowley, Working with the MCA rICHARDS, I FOUND OF LITTLE USE, just set out Act really.

      For procedure, best book is LAG book by Keene, very useful, how to appeal orders and there is a mental health on line with cases.

      If you need any help, or want to discuss, please email me on finolamoss@gmail.com

      Best Wishes,

      Finola

      Reply

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