Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs.
Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. This blog has given parents the opportunity to share their individual experience of their unplanned life with a vulnerable adult/child.

Some parents have had great support with wonderful professional guidance, whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of their disability. Facts about their family life have been distorted and manipulated into many untruths, making parents aware their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling their story in Warrior Mums puts their truth 'out there' for all to see.

A major concern is that when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. If your loved one is in the care of the state and you upset the care staff or social workers then the chances are they will stop you from visiting or from having any contact. Information regarding medication or any other health issues about your loved one's welfare is withheld, all under the guise of your loved one's 'best interest', pulling out the Court of Protection/Mental Capacity Act gagging cards. The cruel message to parents is clear - - toe the line, stop asking questions and taking too much interest or lose contact with your child.

It's hard to believe this government are locking up people with special needs, people who would have had more freedom in the 70s living in big 'institutions' than they do in 'independent living' today...

We have to do something to stop this abuse of power. We have to do something today...

Michelle Daly


26 September 2014

WARRIOR MUM - FINOLA MOSS







Happy 18th birthday, Issy!!













We all hope you had a fab day! xx





The first thing that hit me when I began writing this harrowing story was how beautiful and carefree 17 year-old autistic Isobel appeared in the family photos.
Free as a bird, and as happy as a lark, Issy lives at home in the bosom of her family. She's well travelled and has  enjoyed holidaying in places like Ireland, Majorca and Bruncana, but soon all that may change.

Issy's days with her family are numbered, and if the 'powers that be' have their way, Issy will be removed from her family home and forced into independent living. Of course we all know that independent living really means independent 'of family' living, because many of us have a son or daughter with complex physical/psychological issues who in independent living would still require 24 hour care, a far cry from independence as we know it.

It used to be court orders that detained people in long stay hospitals, now court orders are being used to detain people in independent 'of family' living. 

What is going on?

Where are all the major charities? 

And why aren't they screaming from the roof-tops?

Issy's  story is alarming and I'm sure many of you will agree this 'right of passage' 'best interest' clause, when a vulnerable person reaches the age of 18, these days, is being bandied about a bit too often.

I will say no more about it and leave you to read Issy and her family's story.

Many thanks to you all for your constant support for these amazing warrior mums. Your regular comments and tweets are so appreciated.

Love from

Michelle





"The clock is ticking, and it is now only just over 10  9  8  7  6  5  4   3  2 1 weeks to it's from today when they can send the police in, and take Issy away for ever."


Issy on family holiday in Majorca

“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.”







M. Hi Finola, Solicitor, and previous Senior Law Lecturer, born and bred in Liverpool, lives in Sheffield, Mum to two beautiful daughters, welcome to warrior mums. 

Read this and Weep!

Finola's story

 
It was a cold December night, the delivery room’s huge bowed frosted window reminiscent of an artic voyage. 
After a normal delivery Isabel arrived, happy, healthy and just under 8 pounds, all was well with the world. Her hair was golden, soft and downy. Her eyes, huge and black. She breast feed quickly, and then lay contented on my shoulder.

Her only prolonged crying was after her three months injections, her temperature was high.

She was cared for by Janice, a child minder who adored her, whilst I worked, walked at 18 months and adored the Teletubies, passed all milestones, but refused to go near a potty.

Whilst shopping she would run away, and in Woolworths was found happily eating a chocolate orange, so we used a wrist reign until she was 4, and she was addicted to her dummy.


Recently, I discovered videos taken of Issy at 4, shouting ‘ Shut up you noisy bugger’, at her sister crying in her pram,  watering  flowers in the garden, with what she called a tea pot, I asked her did she like Harry, her sisters pet name, she remained silent, but her reluctance to say ‘No’ expression, said it all, so I persisted, 'Is Harry your friend', she looked away, and then turned to me with the cutest of smiles, and stared intently at me with the words, ‘You are my friend, Mummy’.

At the time I did not realise how lucky I was to have caught this moment for ever. It was to be, effectively our only close mother and daughter conversation.

Isabel was to start our local parish primary school. We had high hopes; it was top of the Sheffield league table. I had described her as lively, and bright, but Isabel still refused to open her bowels on a potty, and our road through the bewildering world of experts began.


Her University nursery, mysteriously talked of ‘these types of children’, a child psychologist diagnosed a specific language disorder.

Issy spent her time continually describing Bob the builder videos, ‘Wendy’s got her hair up and make up on’, she would shout, and then details from the next scene, even when out of the room. At 5 she read age 7 ‘Peter and Jane key word’ books for hours out loud, faster and faster, instantly memorising the words. 


A week before she was to start school Isabel sat a battery of tests, at the Sheffield’s Children’s hospital, the assessors robotic question, ’What is wrong with the picture?’ remaining unchanged, despite Isabel’s obvious confusion, until I eventually rephrased it after several pictures, to, ‘What is missing from?’, wondering at the competency of the expert, and the validity of the assessment.

I went back alone for the results, the same apathetic, robotic assessor  informed me Isabel did not have a general learning disability, her IQ was above average, but she  was on the autistic spectrum, I didn’t have a clue what that meant, nor, where on this mysterious spectrum she might be.

I had previously looked up the definition of autism, and as a severe development disorder, that manifests itself before 2, concluded it could not be the problem. But the lady said no more, and handed me an information folder compiled by the National Autistic Society. We had been processed, their job was done.

Nothing more was forthcoming. Politely I attempted to elicit some clarification, and wittered ‘I’m pleased Isabel hasn’t general learning disabilities, as that means she’ll at least get some GCSEs’, the lady showed no reaction except to say that was unlikely. I persisted, asking if she might ever marry, again, apparently unlikely.

So I had no option but to leave with my folder, which contained an application form to join the National Autistic Society, together with a Bank standing order, and a glossy leaflet describing the three vague and meaningless impairments of this, apparently devastating disorder, which could apply to anyone,- difficulties with communication, socialising and forming relationship, and Isabel always looked people in the eyes. Later attempts at any clarification were patronisingly dismissed as ‘parents in denial’.

I walked back to work numb, and bewildered, feeling I’d been hit by something, but didn’t know quite what.

Now Isabel could not start school later that week. She now needed a SEN statement. This took over 6 months, forced a £100 per week payment to her nursery, and meant Isabel, after phasing her in, only started school  just before the Easter break, but was expected to keep up with the rest of her normal classmates. This was the start of the nonsense, that is ‘special needs’ education.

The school did nothing to accommodate Isabel, other than allow one of their dinner ladies to assist her in class, arrivals and departures were a nightmare, because of the crowds, and Issy still waited until she was home in a nappy, before she would open her bowels. A fact, I was forced to point out, might account for her worsening behaviour in the afternoon, rather than merely her autism. And so began a future of her behaviour being divorced from a physical reason and blamed on her autism.

But Isabel did make her first, and only real friend, Rebecca, and together they would hold hands in the playground, and go to the park at the weekends, until her mother, without explanation decided the relationship must end, and teachers were told to separate them. This was a sad day for Isabel, and her reaction was as always blamed on her autism- she had become a mysterious disorder.

Isabel was invited to parties, and behaved well, but if someone was hit, or objects broken, parents were all too ready to blame her even though she was not the culprit. My daughter would always be the perfect scapegoat.


At 7 Isabel could write anything, if you spelt it phonetically, and wrote little notes to her class mates, thanking them for being nice to her, or playing with her, the children were very good to her, but sadly not the parents, the vocal minority resented a special needs child, and reminded me in a very nice way,’ this is not a special needs school’.

Towards the end of year 2 the school decided Isabel was, (understandably) monopolising her classroom assistant and the assistant was moved to another class. Clearly Isabel took this as a rejection, and must have attacked her at dinner time, and the assistant had slapped her.

The facts and reasons for the incident were covered up, as necessitated by our litigious self preservatory culture, and within two weeks, a meeting was convened and decided her school was not now appropriate for her needs, despite the meeting a month earlier agreeing it was. Her SEN statement for year 3 was changed to fund a mixed disability special needs school placement.


And so commenced Isabel’s scholastic decline, she went from SATs to P Scales, and regressed, despite more and more money being ploughed into her ‘education’.  Such is the scandal of our ‘special needs’ provision.

Isabel became increasingly unhappy in school. She refused to go some days, and social services got involved, their answer to this, and to provide our first overnight respite, was to take her to the respite facility after school, without telling Isabel.

This inept handling  proved a disaster, and Isabel returned the next day, soiled, bruised, and in a terrible state, but we could not find out what had happened, and she now totally refused to go in the school bus, and we had to take her by taxi, restraining her in the back.

The Local Authority had again let Isabel down badly, but as they could not be blamed, we as her parents had, not only to pick up the pieces, but also take the blame, along of cause with the ever present excuse of her autism.

Eventually the journey proved impossible, and Isabel was forced to attend  Sheffield’s Children’ Centre for 8 months, and continued to soil herself. Children and Adolescent Mental Health Services (CAMHS) became involved, but merely put her on respiridone, unknown to us, this was an off label trial. When we complained of the devastating effect on Isabel- breathlessness, huge weight gain, crying all the time, overeating and regurgitating of food, incontinence, black under eyes, we were told these were, other than weight gain, not on their list of side effects, so were not a result of her medication.  Isabel’s received no physical examination. Such are drug trials.


I complained to CAMHS, we had a meeting with a manager. Within two weeks without notice, or even inkling from social services, their last email was to arrange a meeting to discuss future education, as I had found and been in touch with the head of a National Autistic School nearby, we received a court application for a care supervision order, and were summoned to appear before the Magistrates Court within 48 hours. My request for more time as we didn’t have a solicitor was denied, so we rang a solicitor named on the list provided with the Summons and she said she would meet us at court.

That day, as usual, my husband took our other daughter to school, went to work, and I was left to get Isabel up, bathed, as is usual she was covered in faeces, due to her continued impaction, for which despite 8 months of requests, had still not been addressed. Isabel’s behaviour was becoming increasingly violent, particularly when covered in faeces, and as usual I was alone, the taxi arrived, and I took her to the Children’s Centre, and then went on to the Magistrates Court.

We went into a small room, and our solicitor announcing, ‘I used to shout at my children until I started to working part-time’. Continuing with ‘I believe you have not been well’, to which I pointed out I worked full time, and had just finished marking 280 exam scripts. ‘Social services will need your GP medical records could you sign this consent, and the court will need psychological reports on you both’. All of which thank goodness I continued to refuse, despite her threat that if the court do get these they will have nothing to go on and may presume the worst.

 I've just had a word with the social worker, and she is prepared to provide you with restraint training’,’ your case is a very complex, it will need to be transferred to the county court’, fortuitously allowing her to claim her time at a higher rate.

So the Magistrates, one who I recognised, duly agreed, complimenting us on making the progress by agreeing an offer, which we had been requesting for years, and to date has never been provided. We picked Isabel up from the children’s centre covered in faeces.

The case continued, us both being forced to turn up at 10.00 am, our solicitor then giving us an order from the social services, which I then amended, with lots of ‘if’s and ‘reasonable’, aware that if we failed to comply, due to Isabel's school refusal, the order could be enforced by a care order, and the police’s removal of Isabel for ever, despite the supervisory nature of the application.


We stood huddled in groups in the court foyer, the social services solicitor and social worker, the Children and Family Court Advisory Support Service (CAFASS) guardian and her solicitor, and us and our solicitor. At one point so close, I remarked to our social worker,’ you could get us to court but you couldn’t get us nappies’.

Social services did not need this expensive, timewasting charade, we had never not complied with their requirements,- access to Isabel, attendance at the Autistic School I had found in September, attendance at Children’s centre, a hospital appointment for a bowel scan, which we had also fought for.

The position was quite the reverse; it was the Local Authority who had failed in its duty to provide support; education and medical care not us. They needed the legal enforcement and worse still were using the law to cover this neglect, with the ultimate threat of an interim care order. They could also remove our other daughter.




At the second court hearing, now in the plush surrounding of the purpose built care courts, our solicitor went into the judge, without us as  appeared the practice, but I have since found, shouldn’t be. She returned with an ‘agreed’ court direction that my other daughter be assigned her own social worker, and undergo a psychological assessment.

I told her social services had not even discussed this, so how could we have agreed it. She would have to go back, and disagree it. Furious I stood up and said,’ if they go anywhere near her we’ll be on a plane to Australia, to which she sneered ‘I’ve never acted in an abduction case before’.

She then said told me if I didn’t agree, the court would have nothing to assess my daughter’s welfare on, and might apply for a care supervision order in respect to her. As if on cue, the guardian’s barrister then rushed in to announce the judge wanted them in court. Despite my solicitor’s speedy exit, I stood my ground. She returned to inform me the judge had told the social services, if they wanted their direction, they would have to apply for care order.

And the pressure for such an application was kept up throughout the proceedings by the guardian’s barrister, voicing her concerns for my other daughter’s welfare.


Eventually some 8 months after Isabel started soiling herself after our one and only overnight respite, we arrived at the clinic to investigate bowel problem. Isabel was a star, the terror of ketamine and inpatient attendance was avoided, and we were shown the scan, faeces could be seen almost to her chest. I could only guess at the pain and discomfort this must have caused her. How brave was she, and how appalling were those statutorily charged with providing for her.

We were charged with clearing it out, which despite the mess we were desperate to do.

Sadly I suspect the real reason the NHS were now forced to sort out the impaction, was not Isabel’s welfare, but the National Autistic School not wanting the mess of a continually incontinent child.

I spent the following weeks camcording my statement. I still have the DVDs. The poor solicitors typist typed more than 30 pages, I bought her a bottle of champagne.

The social services submitted no expert evidence and the application was withdrawn.

We tricked poor Issy into leaving home by a return journey to the clinic, but drove on past the hospital, and for a further 20 miles. Amazingly Isabel looked sad, but resigned, as if she had always known this was inevitable, she went freely with a care worker to the swings, whist we were shown her new home, a sparely furnished, bare walled, clinical box with a small view of a wall.

The team leader said this must be the hardest thing a parent could do – how many times already had she said that, and tissue boxes were strategically placed in the reception and office, the buildings resembled Auzwisch.

Our social worker asked us to sign some documents, again we didn’t know what they were or that this would be required. It was a s20 consent form. Isabel was now ‘a looked after child’ a prerequisite to the £177,000 per annum funding. I asked pathetically, what would happen if we refused to sign, she said we would have to take Isabel back home with us… it hung in the air unsaid ‘and wait for the care order’.


My last glimpse of 10 year-old Issy was from our car as we drove off. I strained to see if she was happy on the swing.

I remained numb throughout the journey back, we did not know  when we would see Issy again. Suddenly on arriving home the strongest feeling I had ever experienced suddenly hit me full on, I couldn’t bear to live another moment without Issy. It paralysed me.


We were only allowed a visit once a week through to November 2007, during this time we did not know if she would ever be allowed home again it was a terrible time, and then a weekend. 


We had wanted a 38 week placement but they said Isabel would have problems with bus-- rubbish as we took her back and forth and on buses etc to Ireland; they just wanted the money. They said she had to be assessed for 6 months but no evidence of any assessment taking place in NAT school, and care worker who did agency work in school said as did her assistant teacher that she was not severe enough for such a school and was similar to pupils in our local special needs school.



By December 2007, we fought for 3 week ends every month, on the fourth, we would go up on Friday and have dinner with her in the family room, and two weeks holiday in N. Ireland, EASTER, CHRISTMAS AND SUMMER, where her fathers family are. We hired an apartment over the road from her granny and granddad and Uncle Sean near to her Aunties Roisin, and Fionnuala and her nieces Naimh and Eve and Christopher, so plenty of people in the apartment, and to visit, She loves babies. And a week in Majorca... So a third of the year she was with us, but no deduction to the NAT £177,000 and we had to provide pocket money and some clothes money- We got £80 a month DLA-- its all about the money to them.
 

Part Two - Finola's blog
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.
Issy on family holiday in Bruncana
But none of this matters, or is relevant. To the state, she is whatever they need her to be, and they are the experts.
Her CAMHS psychiatrist stated as an autistic, she could not form relationships, 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 be provided with her own representation, an ‘independent’ mental health advocate, a stranger, preferred, to her parents, and paid indirectly by government. 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 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 a visit there 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 lady told 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’.

 
Issy with her Dad


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.


M. Finola, thanks so much for sharing your story. I'm so sorry you've had all this heartache and stress. I ask everybody reading this story to please please share on Twitter and Facebook by clicking on the links in the blue box below. It's a cautionary tale that affects all of us! 
 
Twitter @finolamoss


To read Finola's blog - http://finolamoss.wordpress.com/   


Northamptonshire Healthcare NHS Foundation Trust v ML

@copyright No part of this blog can be printed without the author's permission


32 comments:

  1. My God, I'm struggling for words!

    This is horrendous, and on a personal level (as a parent of a child who will never survive without support) bloody terrifying! (excuse language)

    I'm struggling to get my head around this, I hope to God that someone (other than those who love Issy) see sense, because what they are doing to this child (and effectively she is a child) and to her family, is unimaginably cruel.

    I'll pray for Issy Michelle, and for her family, and the way things are going - for all parents of disabled children/adults (myself included)

    Take care, Kimmie x

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    Replies
    1. Thanks Kimmie! It's pretty frightening what's happening to these families and in Issy's case, yes, let's hope someone does see sense. xx

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    2. Kimmy it's just like Stephen in so many ways. I was in tears. All I want is to help. And shout from roof tops. Xx

      Delete
    3. Anonymous yes it's Steve broach, it's horrendous. I feel numb as this is so hitting me hard. Xx

      Delete
    4. Anonymous09:32

      horrific, like a story from the middle ages.

      Delete
  2. Anonymous09:56

    Hi Finola, well I don't even know where to start. I found myself gasping out loud at several points during your story. After having read about #justiceforLB #justiceforNico #bringstephenhome #keepclaireinswansea and the horrendous experience of Steven Neary, you would think I could no longer be shocked. But I am shocked. I can`t believe what you and your family have had to endure, and now you face the thing that terrifies us all - someone else making decisions about your child`s future, knowing the criteria will be based on financial and convenience issues, not on what is truly best for your beautiful daughter. I know autism campaigner Kevin Healey is helping some of these families, and specialist solicitor Steve Broach (I think that`s his name) and maybe that is something to look in to. In the meantime, maybe we could all write to our MP`s and the government? Are the NAS helping you at all? Something must be done for your family, for Claire`s family, for Stephen`s family, and to get justice for LB & Nico. I have the greatest respect for you as a Mum, and can see how hard you have fought for your daughter. Issy sounds like a very sweet and loving young woman, with a warm and nurturing family, and clearly being with you is in her best interest! Take care Finola, Jane xxx
    Michelle, thank you for sharing this story and highlighting Issy`s situation, Jane xxx

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  3. Anonymous18:30

    Thank you all so much for reading about poor Issy, And taking the time to make a comment.

    Lets hope we can all work together to stop, what is an evil government policy, which has obviously been planned for years, and for the past year has been put into practice by LAs, GPs, courts, NAT, independent living providers, and care agencies.

    It is a big cabal to fight . And its worth a lot of money- billions now, and in the future- guaranteed...... and profit is almost impossible to fight.

    The first step would probably be a petition to Cameron and Lamb with change, com, asking to stop this cruel, abusive, dangerous nonsense, which has been deliberately laudably named 'independent' living, supposedly not only in the best interests of autistic children, but all learning disability, and physically disabled. They, could all be encaged for ever at 18. ..... and as always, it has all been done by stealth- no media, no vote, no consultation, and with NAT endorsement.

    NAT provide independent living. Isabel would be moving to such, a place built only last year Thurnscoe House, had she not, at 7 stone, with 2 rotten teeth, suffering PTSD, and an impaction, refused to go back to her NAT school.. We could not have got her out of her school, no matter how abusive,as a care order would haven then been used to prevent us from even seeing her. She poor thing, had to do it herself, and what a brave girl was she.

    Please contact me, strictly in confidence if you want, on finolamoss@gmail.com

    And a big hug from Issy to Michelle for being her voice.

    Love and Thanks to you all,

    Finola


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  4. Independent living has been suggested to me. And I do not want it thank you very much islingon. And Hun. Norman lamb hard to get him he is a weak so and so. However I have met his associate at Whitehall. Listen I am going to do everything in my power to help you together with Michel. Meanwhile Hun Steve broach is amazing. Can you get bindmans law office in London? They work with Steve. Steve is a QC and he is working on a plan. Please contact bindmans , as you are a solicitor. Contact john halfor. I can pass his details to Michelle. They are now working with me. Isto hen been their Clint for 4 years.

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  5. Sorry Halford. John Halford.

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  6. Dear Finola I am so sorry to hear of your awful fights and struggles from the very services who should be making life easier for Issy you and your family. This is such a travesty, I truly am shocked at what is happening to your daughter and you as a family this seems to happen to all of us families, who have children with special needs. We, love our children and what nothing less than the best for them, it seems to be hard for these professionals to understand that is always what we want. I hope that someone will help. Sophie xx

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  7. Anonymous04:00

    In tears here, how utterly horrendous. Words fail me, truly... I just hope beyond hope that the #LBBill becomes law.

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  8. Anonymous10:53

    Please see my comments and replies to Steve Broach on the LB Bill blog page.

    Thank you. And please, [lease, when or if you ever get the time, have a look at my blog by googling finolamoss

    We need effective action. Find out, if you can what has already been done on your behalf by NAS and other charities, and what is now proposed by the LBBILL We are wasting time , more of our children are suffering, and even dying, and being removed from us, we owe it to them, ourselves, and society to do something about it, or at least find out what is going on.,

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  9. This is why the MCA is so very, very, wrong! Regardless of the supposed intentions, the reality is that it is being used and Abused to remove choice and exclude families and to force the opinions of officialdom onto the individual rathe than allowing them to make their own choices. It isn't just those who lack capacity who are caught up in this - people with capacity are being deliberately labelled as lacking capacity in order to use the MCA against them.

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  10. Anonymous14:43

    I am extremely grateful to Michelle for allowing my story to be aired for another week. And for all her efforts to continue to stop, what is now a policy to encage all who can be, and that is a lot under the Mental Capacity Act 2005.

    This Act fully came into force in August 2013, and since then court applications to the court of protection under it, have risen over 60%, yet the judges have not been increased, and have complained of too many cases i.e. LA applications appear to be being, almost rubber stamped. So we are very much at the mercy of our individual LA’s.

    The more severe the disability, the greater will be the push to encage, as more money can be claimed by the encagers.

    Frighteningly this means that the more distressed a vulnerable person is, likely made so by their inappropriate care, or removal from home, the more evidence LA get of their’ incapacity’, remember it need only be temporary, and the ‘best interests’ of their proposed ‘ care’, and the more money they can claim, and encage. It is win win.

    Do not let anyone fool you with smoke mirrors, and diversionary timewasting techniques.

    Continued in next post due to word limit

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  11. Anonymous14:49

    Nor that this is about cost cutting. It is a well orchestrated, long planned policy by governments, to make huge profits from need and disability.

    Look at Issy. Since 2013,£ 200,000 has been spent on her, previously another million in her 5 yr 6 month stay- a third at home- in her NAS residential school, and she has had no school ( as no SENs now after 16 ), or any overnight respite. Respite centres are not now available to the over 17’s, only the independent living unit, where eventually they are to be encaged in for ever, so might never return from respite.

    Nor is it about individual carers, or social workers, they are deskilled form filling cogs, in this efficient, clandestine, ruthless, organised onslaught to encage and it happens as follows;

    Support via agency at home gets dirt on parents, as to their inadequacy and abuse. Made up and spun. Social worker, care agency pay for SS training courses for care workers, you will not be told they are a social workers or trainees. If and when you find out, it will probably be too late. And even if it isn’t you will have problems refusing them access to your house, as they will say that they have genuine concerns over the vulnerable adult in your care.

    Meanwhile if under 21, there will be an education package provided by a LA public/private partnership like the one we had , they now operate a drop in for all parents with teenagers with behavioural problems in confidence, so they can get you to spill all your problems, and use them with SS, to allege you cannot control and/or your parenting is abusive and/ or neglectful, and in your child’s best interests to live independently. They work with the social services and will use the same agency staff. They need your express permission to start, or continue an education package for their LA funding.

    The SS will then offer your child/ adult psychological help, this will provide them with the lack of capacity report, and feed into best interests ( any emotional abuse at home ie isolated , targeting mother, not allowed to choose own clothes , being kept a child, not given boundaries etc), for the court.

    Meanwhile for support they will ask you if you are depressed, anxious, and offer you psychological help, again you will be assessed, and not in your favour. No doubt one of the 300 disorders they can chose from will be diagnosed. The favourits are fabricated illness disorder- the renamed munchausen, depression and an anxiety disorder. They will also get your on message GP, as they are now part of the encaging process, to examine you, if you have any likely future illness, at moment diabetes can usually always be diagnosed, or are just old and fat it will be used against you.

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    Replies
    1. At least someone got me to laugh; "...or you are just old and fat it will be used against you." This makes the point so well - anything and nothing can be used to justify the decision of professionals for profit, which is how I see those who have to power to make "Best Interest" decisions.

      Delete
  12. Anonymous14:55

    If child 16- 18 needs adult support services, which effectively other than encagement appears now not to exist, transition forms will be filled up, to cover what accommodation services they need – all forms are now in place to be rubber stamped by court for removal. These will also allow a deprivation of liberty order and your child will be removed forcefully if need be by police involvement.

    It is likely they will be distressed, so recently, ( 2008) CAMHS emergency assessment centres have been set up where, although they receive no medical examinations if they refuse, which is likely, they receive ketamine to protect staff and control, Issy got it for just a tooth extraction, and then enforced resperidone for life . Government has spent millions on this MP Liam Byrne Hansard 2009, commented on it.

    This is not a conspiracy theory, as they will allege it is. Please read my blog googling finolamoss.

    I will write more on the law we have, which has been overridden by MCA encagement, and what we need . Did summarise on the LB BILL my blog comment.

    Remember the MCA and the horror of independent living was as a result of all those expensive campaigns i.e. ‘I exist’. ‘Difference not indifference’.

    What difference did all these campaigns make, particularly if they are all encaged? No one will know they exist. Care is in secret. Difference is not being tolerated they are being removed from society.

    How come things are much worse now for all disabled, but particularly the autistic ?

    In the Times it advises families how they can set up spy cameras in their relativities care homes.
    We will have no such rights.

    We now have no support all is silent waiting and poor Issy still in bed.

    We have had billions of campaigns. Our children have been used as cash cows for too long.

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  13. Anonymous19:40

    I have supported your story in my latest blog post:

    http://planetautismblog.wordpress.com/2014/10/12/autism-and-deprivation-of-liberty-the-shocking-tale-of-what-the-state-is-doing/

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    Replies
    1. Thanks so much for your comment and supporting our post.

      I see you also linked the case of the 19 year-old woman from Somerset who went into respite for two weeks and ended up staying for 14 months until Judge Nicholas R Marston saw sense and found the council had unlawfully deprived the teenager of her liberty and she returned home.
      http://www.dailymail.co.uk/news/article-2777976/Judge-condemns-council-illegally-removing-autistic-teenager-parents-keeping-care-14-months.html

      It's like an epidemic, people with special needs are being bullied and pushed around, deprived of their freedom of choice and liberty up and down the country.

      Delete
    2. Thank you annon, for putting link in Planet Autism Blog. I have only today seen it. And have made a comment there yet to be moderated.

      I hope you, and all readers, can read my post in my blog on googling finolamoss about why this is happening in Rip off of Disability and Education.

      No one could but believe, this was not always the intention of our former and present governments, and not as they want you to believe mismanagement, cost cutting, and subversion of all the legislation and Codes of Practice since and including MCA 05- they were smoke and mirrors.

      Delete
  14. Anonymous19:43

    "In the Times it advises families how they can set up spy cameras in their relativities care homes.
    We will have no such rights." But the point is this is done secretly, so they wouldn't know? Spy cameras come disguised as all sorts of gadgets, watches, clocks, pens, glasses etc. It's worth looking into.

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    Replies
    1. Mental Hospital staff, independent living etc will be looking out for spy cameras.

      And families are usually very quickly, particularly if they raise issues of care, excluded from even visits, on the basis, no doubt from experts, that the visits are upsetting their children/ now physically adult, but given a mental age of under 8.

      It is an appalling visa of our society's mindset, that this should even need to be suggested, as it presupposes quite rightly abuse, and is saying, we accept profit will be put before care, and we must try to see if it is.

      We have a society now which is forced not to have morals, and not to trust. As it is accepted that the end justifies the means, and you should do anything if you can get away with it.

      Honest, dedicated people in care, are leaving it, or not given any zero hours, so must conform.

      This abuse is systemic, to make as much profit as possible, and is made deliberately unaccountable, hence the suggesting the answer is spy cameras as in the Times, rather than police it properly or give relatives the option to remove their loved ones.

      We should be horrified by the need for this, and ask why we cannot trust care, and if we cannot make it accountable and/or at least give us the chose to remove our relatives, from a potentially abusive regime, over which we often have no control, be it of the old, or disabled, as it is enforced.

      We only have to remember the poor little boy with brain cancer , his parents threatened with a care order , multimedia coverage, such is the all powerful cabal, had they not had a car, a place in spain, and you tube, that little boy would have had his brains fried, and they would be excluded, and in prison if they went to media, who wouln't want to know had they not got out of England.

      This gov is all about enforcement for money And boy do they have the power. They have made sure they have..

      Delete
    2. Finola, preventing a relative from visiting a loved one in a residential setting used to be a rare thing, so rare it was covered by the media, but that's no longer the case. Carers have turned into jailers and one cross word, genuine complaint or (natural) interest in their welfare and day to day living from a visiting relative means they can be banned from having any contact.

      There was a time the very mention of the Care Quality Commission would have wiped that judgemental expression right off their faces, but today staff know that as long as they've done their health and safety courses and the files are up to date, the CQC don't give a damn.

      With this uncaring government and an indifferent media there is no redress and the message parents are getting is clear - keep our vulnerable relatives at home or risk losing them forever.

      Delete
    3. Anonymous12:43

      With Care Orders and Deprivation of Liberty Orders under the MCA 05,,governments past and present, have ensured, that we will not be able to keep our relatives at home, no matter how much they want to stay, or how much we love them.

      As they are cash cows, and the establishment have for seen a growth industry, and the perfect business model. And via the courts, they have a captive market, that cannot complain.

      It also gets all these old, disabled ,vulnerable people off the social services books, and into the secret care system, where no information can be got out, and all is unaccountable, even the service users death.

      I have a friend, who is rich enough to be able to pay for his mothers own carers, this policy of cause doesn't effect the rich as they can keep the social services out of their lives, and acts for families, who have had care workers, demand protection money from them.

      These workers can do what they like, as can their paymasters to your loved ones, and they know it.

      They can exclude the family at any time, and there is absolutely nothing you can do about it.

      If you apply for a review to the Court of Protection under MCA or high court under MHA, you will get nowhere, you have no experts, they are all paid by the government.

      The official solicitor acting for your loved one is paid by the establishment, as is the Independent Advocate that represents your loved one. The power is terrifying, and all in breach of HRA s8, but courts will say the action of the state is proportionate !!

      No one voted for any of this, and were where all the 'independent' voices of the vulnerable and their families ?

      Delete
  15. Anonymous09:37

    NICE guidance do not address the fundamental flaw in drug use,, ie that there is no central check, or even audit, of the amount,, or type of drugs, used in residential care homes, and it is unclear, if NICE regulations even apply to the many independent living units, that have been set up for all those 'adults'1, with learning disabilities and autism removed from their families.

    It would appear, the prescriptions for all the drugs used,, is left to the discretion of individual GP practices, and CAMHS teams, and even, it appears sometimes, the managers of care for profit homes themselves.

    With government policies to encage via the MCA 05,particularly altzeimers, and autistics, in care homes, and independent living units, it is of great concern that there is no central check on the amount, or type of medication used, in these commercially run places

    With families, often deliberately excluded from these vulnerable people’s lives, and the fact that a recent report has revealed that 3 a day learning disabled die needlessly, this is very worrying.

    As we have seen with the many scandals disclosed in the media, care in homes can be abusive, as the model is to put profit before all.

    As drugs make care more efficient, and therefore more profitable,and make money for very powerful drug cartels,, and GP’s prescriptions also lead to profit for GPs,, this is a very dangerous situation for our most vulnerable, and should have been addressed by NICE.

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  16. Anonymous15:13

    If we are to change the law, and stop the terrible abuse for profit, of the mentally disabled, and indeed the power, the state now has to control our society, we must know what the existing law is, and how it has already been rendered unfit for purpose, by the House of Lords, as it was back in 2007, when the then HL refused to allow the MHA 07 through as ‘draconian’ but was resurrected and passed by our coalition.

    Please google, and read, Mental Capacity Act 2005 post legislative scrutiny by the HL Select Committee, particularly the conclusions and recommendations on the definition of capacity and the lack of input from carers and the mentally disordered on page 9.

    Past and present governments have by MCA and MHA 07,and the systems and professional roles created under these, contrived to create a vague, in breach of the rule of law, definition of capacity and an all embracing definition of ‘mental disorder’; to increase the acts and therefore the state’s power.

    Law making decisions are given effectively to the professionals, the definitions of which, are further extended under the act, as the courts do not have the resources, or time, to investigate their evidence, and there can be little opposition, as the mentally disordered and family have no independent legal representation, as there is scant legal aid available, and the disordered is represented, by a mainly on message, rubber stamping Official Solicitor appointed by the court.

    Independent Mental Health Act Advocates merely have a role of clarifying information and informing of rights, and cannot take part in the actual decision making process. And family need only be consulate and can be cut out completely from the court proceeding if any ‘abuse’ neglect shown which is likely to be – see my blog finolamoss.

    All this is done in secret, and all are gagged for life so nothing hits the press.

    It is a tarrying sealed system ripe for abuse, control and making millions and completely changing social welfare and our treatment of the disabled and old as a society
    .
    It would not be law had we not had a coalition government with no democracy or parliamentary debate.

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  17. Anonymous17:20

    Further to my comment above, I also posted this comment below on the LB B. My concern is that even if, as my previous post mentioned, it were possible to sort out the poor law in the MCA,, is it feasible that we could then dismantle, and reverse all the structures, corporations and bodies now in place?

    Yes, it is obvious that the only people who will care for their children, and know them best,, are their parents,.to say nothing of the terrible abuse,and distress, of removing anyone, but particularly an autistic person, from all they know and love, to a sea of impersonal, zero hour workers, a clinical environment, and a prescribed routine, and an unfamiliar environment.
    But what will the National Autistic Society, and other charities, and corporations do, with all the independent living units already built, bought, or leased,needing a constant supply of new autistics.

    Do we now get all those encaged released.?

    Who will populate the empty new development flats, earmarked for my daughter ?.And the newly built National Autistic Society and Autism Initiatives independent living houses.?

    Who will be the captive audience for new autistic drug trials, and feed big pharma ?
    .
    Who will reinstate proper support at home, and respite centres away from home, and schools after 18.

    Who will risk assess, and social work autistics in the community, as the social workers, GPs,, NHS don't want to, and would like to see them safely encaged.

    The system is set up, and has been planned for over a decade.

    To say nothing of all the care agencies and corporations hungry to make future profit.

    How can all this be changed ?

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  18. Anonymous21:52

    Anothe comment as reply I just put on LLB BILL. For all the money they have had now for nearly 20 years big time NAS appearr to have done little to help the autisic.

    Here is comment
    ---For the past, at least 20 years, since before 2004, the National Autistic Society, judging by their accounts published in the Charity Commission website, received large amounts of funding, from campaigns of autism awareness and the government..
    Why then, have they not tried to sort out this very basic issue ?
    .
    My daughter attended a NAS school, and her local GP never, and would not, do visits to the school, even if it might cause an outburst to attend the GP practice,

    My daughter had such an outburst, because she was forced to wait in a crowded waiting room, for half an hour. The then necessitated restraint, caused 48 bruises (all blamed on self harm), 2 years regression, depression,CAMHS involvement, a breakdown in placement, and a 4 stone weight loss.

    Why are NAS not more involved with the LB Bill ? Have they,or anyone got examples of how, as you say these explosive episodes have been ‘successfully dealt with’.

    The government will also ask, what can we do about ensuring safety on future outbursts, which we cannot, because that is the nature of the condition, which is why it should not be within definition in MCA,, but even if it weren’t, would be under MHA.

    The National Autistic Society, by now, should at the very least, have tried to highlight this problem, and notified , informed all agencies via fact sheets, and advised the autistic, and their families of their rights ast the state, rather than merely having a solicitor referral service.

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  19. Thank you for sharing your story, Finola, and Issy's. I will do whatever I can to spread it. Until these travesties are brought to wider attention I fear things will not change. Few people know anything about this, unless, have a special interest. We really need to get it into mainstream media. And keep going, hope it helps that loads of people are rooting for you to beat the bastards

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    Replies
    1. Thank you Jan

      Have just watched, with interest, your excellent lecture, on You Tube, about the history of the treatment of the learning disabled.

      It would appear, we have now, come full circle, and, the venture capitalists, like LIfeways, a Canadian Pension Fund, who own Autism Care, and Kingdom House in Sheffield, from where, Thomas Rawnsley was removed to the ATU, where he died.

      Charities, and such venture capitalists, have built the new institutions, in the laudable guise of supported/independent living, where these vulnerable young people, are placed by court orders for life, earning 3500 per week.

      Your support, and everyone else's, means a great deal, and is, very, very much appreciated, and, needed.

      As we are beleaguered, and in a dire situation, as it appears so are, all families with a child with autism, learning difficulties, or, indeed any mental health, or behavioural issue.

      Particularly, since the secret, draconian, all powerful Mental Capacity Act.

      Please feel free to email me, about anything, on finolamoss@gmail.com

      Thank you once again.

      Best Wishes,

      Finola and of cause, Issy

      Delete
  20. Hi. I'm going through the same kind of thing with my daughter. I've written a blog too. I believe it better my daughter lives with me too. She cries when I leave her after a visit. What's so wrong with a child living at home? I feel the same as you but I'm seen as weird.

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