What is autism?
The truth is startling.
No one has a clue.
There is no pathology, no gene, no biomarkers and little understanding .
It is an intrinsic part of an individual’s personality.
And as such, many maintain is not an ‘impairment of mind’, under the Mental Capacity Act.
And, it was not until recently a mental disorder under the Mental Health Act.
It is a spectrum, we are all on.
Like quantum mechanics, it does not exist, until observed and labelled.
Only 70 years ago, it was merely a Greek word, meaning, ‘absorbed in self’.
Associated with loners, high intelligence, gifts, cold mothers, and, the children of academics.
Newton, Mozart and Einstein, who at 7, constantly repeated certain phrases, all showed autistic traits.
On reading Plato’s description of Socrates, he could well have been autistic.
A study by University of Sterling this year shows it is associated with creativity
Yet a ‘lack of imagination’ is one of its main diagnosis criteria.
Read this lady’s account of the genius of her autistic son.
Scientists have urged it should not be treated as a disability but a different way of thinking with advantages
Here a mute autistic writes how wrong the experts are about him.
But today in the western world autistics are made the biggest cash cows .
They cost the UK more than cancer,or heart disease.
Yet a recent study shows, they are 2.5 more likely to die prematurely in comparison to the rest of the population.
Why, as autism is not a physical illness ?
Is it because the autistic are huge pharma cash cows, earning billions for the autism and pharma industries, yet receive little or no proper medical treatment.
And as a lucrative commodity the number of autistic in the UK has increased ten fold, in the last 15 years, and 50% in the last 5 years.
In the US, study shows, it will cost one trillon billion dollars by 2025 http://consumer.healthday.com/cognitive-health-information-26/autism-news-51/u-s-autism-costs-could-reach-1-trillion-by-2025-study-701789.
Surveys increase the epidemic.
So there is an awful lot of money to be made out of autism.
It is likely, some disorders diagnosed as ‘autism’ is not but reaction/effect of vaccines- compulsory in USA, put under autism’s vague umbrella.
Autistics are now assessed, as intellectually disabled, based unfairly/discriminatory on adeptive skills alone, irrespective of IQ.
And then taught, medicated, and treated, as if mentally retarded.
This allows inappropriate ‘special needs’ non- education, drug administration.
And, worse still, autistics being assessed, at 18, as being ‘incapable’ of the most basic decisions, as to who they have a relationship with or where they live.
The Mental Capacity Act 2005 is being illegally enforced, allowing the state to declare the autistic, incapable of making any future or past decision.
Yet, educationally, autism, is a conditioning disability, not a learning one.
Autistics are not intellectually disabled.
Autistic children’s IQs, have been shown, in recent research by Swansea University, to be underestimated, as IQ tests are designed for non autistic children.
They merely have a different perception of reality, and therefore think, and learn differently.
Autism, is explained and defined, as a difficulty with social imagination, communication, and interaction.
A vague, expansive, meaningless definition.
What is social imagination ?
Autistics, once labelled, are perfunctorily and simplistically stereo typed, with little regard to the individual.
All like routine, all have sensory problems, all do not look you in the eyes, all hate transitions, all do not understand others emotions, and, the most damning judgement, all are insentient, under the Mental Capacity Act.
And all this is wrong and discriminatory.
The different, are penalised, because they do not behave socially, learn or communicate as they should.
This, and, ever more blunted psychological diagnostic tools, make it, far too easy to label, a person, who merely, has an unknown, educational, communicational, and social ‘difference’ from the norm.
The diagnosis based on adeptive skills and misdiagnosed intellectual disability.
With such a cash cow, is it any wonder, more autistics are sought.
By awareness campaigns, in their best interests.
The latest is, to harvest autistic girls, on the basis, too few are being diagnosed.
Yet, the proportion of autistic girls, accords with the biology that the X chromosome masks the disorder in a female.
Who is merely a carrier of the ‘autism’ gene.
And a female will need both her X chromosomes to be affected, so an affected X from each parent, to manifest autism.
So is 50% less likely than a male to be autistic.
Mandatory Universal Autism Screening has been called for.
The ‘at risk’ who might not be autistic are sought, and research into genetic causes and biological processes paid for presumably to market drugs and vaccines but specific genes cannot be found.http://www.medicalnewstoday.com/releases/308185.php
It can now supposedly be detected in babies and now before symptoms appear.
An autism label has already proved devastating for over a million in the UK.
Who with America, form an epidemic in the western world, but not in the East, and, autism, is virtually non-existent in the third world.
The, ‘in the know’, late developing eccentrics, with private means, can avoid detection, and labelling, research proper education, and, like the characters in the New York specialist school in the book, ‘Bring in the idiots’, become high flyers, in literature, and technology.
But not, the ever increasing majority, destined, to be cash cows, for the burgeoning autism industry.
Which spans charities, pharmaceutical, educational special needs, NHS, social care, and independent living.
74% are on anti-psychotic drugs, and, imprisoned for life in NHS ‘treatment’ centres, or ‘independent’ away from family living.
Autism is a social conduct development ‘disorder’ at most, and was not within the Mental Health Act until recently.
It is not a mental illness.
But recent campaigns that autistics’ mental health was being neglected, enabled, autistic conduct to be perfunctorily diagnosed as separate mental disorders.
Even normal reactions of autistics to crowds, noise, muti stimuli has now been labelled a separate disorder of Pathological Demand Disorder and Petitions supported by NAS have had it recognised in Scottish Parliament.
How can a mere facet of autism be recognised as a separate disorder, when this should have been appreciated as part of ASD and educated, treated cared for already ?
It serves to surreptitiously widens the net of cash cows by more diagnosis and will not improve care.
ASD has only be placed in the MHA fairly recently and is not a mental but a conduct disorder.
Continually government money is spent to show autistic are mental, the latest Cambridge and Coventry University report on their greater risk of suicide and depression January 2017.
This is the worst form of discrimination and misrepresentation of the autistic and allows autism to be a mental disorder and other mental disorders to be added.
Each requiring profitable medication- OCD, psychosis, anxiety, depression, self-harm, OD, ADHD, and increasing the amount that can be claimed for their care.
So they really are a useful, lucrative feed to the mental health industry and pharma.
How did this all happen? Is no one fighting for the autistic ?
In 2007, the National Autistic Society was the 8th largest charity in the UK, rich with government funding, and, 177,000 per annum residential school placements.
But, was, strangely, precluded by its trust deed, from researching into the causes of autism.
Its campaign for autism rights, embodied in the Autism Act 2009.
Resulted in worthless, Local Authority Guidelines.
Which need expensive, complex, costs risky judicial reviews, by individuals to enforce.
To date I know of none.
So Local Authorities can ignore the Act.
As shown LA’s adult services policy of non-provision of specialist care.
But, the LA, commission, and the NHS pay, independent living providers, like the National Autistic Society, Autism Care UK, on the ‘severity’ of the individual’s disability.
Using the money available for disabled, and family support, under the Chronically Sick and Disabled Act1970.
But now neither are given an option except private enforced secret care.
The autism industry, and venture capital, profit from creating ‘difference’.
The autistics have lost their lives, and, we have lost our visionaries, and eccentrics.
See here how a definition of autism allows the state and care workers to decide all your decisions for life even when you are obviously capable and high functioning.
See fate of this 20 year old diagnosed as autistic at 18, when Dimensions who own independent living support and the LA got involved in her life. And an LA behavioural psychiatrist who decided she was MCA incapable of deciding, who she had relationships with and where she lived- terrifying stuff, happens nowhere else in the world.
Read here latest book dispelling the myths about Autism by Steve Sliberman, The Legacy of Autism and the Future of Neurodiversity
Despite or because of being made cash cows a study revealed they die prematurely
Dr Hirvikoski says that she was “shocked and horrified” at the results.
Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.
Friday 6th March
All is very bizarre,
All is very dire.
We, as always, are kept in the dark, until, whatever happens, happens.
As you can imagine, in between my waves of nausea, and caring for poor Issy, I have been kept, very busy, coping with officialdom.
I await the arrival of the other lady from the agency, who attends the social services’ weekly ‘surveillances’.
We had our 5 th ‘surveillance’, with our 2 social workers, two days ago, the sixth, next week, is the psychologist’s visit, to declare Issy a vegetable, and, observe her emotional state, and, no doubt, ours.
We are not told, nor dare ask, not that any definitive answer would be given, how long the ‘surveillances’ go on for.
It is now 11. 00 am, the lady was due at 10. 00am, so I assume, she is not coming.
We have no timetable of hours.
Angel Eyes , has supported for three weeks, from 10-4 Monday, 10-3 Thursday.
We received an invoice, from the agency, for £710.50 for 50.75 hours support for February, at £14 per hour, yet Angel Eyes, is paid £8 per hour, and, no traveling expenses.
And, has to put her time sheets online.
She also, appears, to organise support, and, inform us.
Personal ( direct payment ?) services, the basis, I assumed, this agency was paid on, allows £7.50 per hour, and a £30 per month administrative fee.
A little over half, of the agency invoice.
Adult services wouldn’t pay the £710.50, as the agency, is not approved by them
But, as the LA pay, are the source of all future lucrative, reliable business,and the piper that calls the tune.
The agency boss, assured us, he could have, our ‘pot of money’, held by the previous education package, (‘fist lady’ and co, no show), transferred over to his company.
Remember, the only alternative support, we were offered, was ’ Fist Lady’, and, new friend……
So, what can we do to be reimbursed this, and future support?
Sue the Local Authority, if we can find the forms, pay the court fee, cope with the hassle, -service, posting etc, and pay for the extra support, to attend court, and risk the LA’s legal costs, if we lose, which would be more, than the £720.
Courts are now profit making, and provide no legal advice, just an expensive, time consuming answering machine service.
We have already paid out, £900 on officialdom.
No, we have no law, as, it cannot be enforced.
And complaints mechanisms are shut down on a court application.
So are living in the wild west.
Just a reminder; the new agency support, is in lieu of Issy’s education, social care, respite, and NHS care.
Another reminder; we have had no overnight respite, other than, the three nights blogged in July 2014, and 3 evenings, in over 2 years.
The adult services lady told us, the insisted on, by social services agency support, of 2 workers in the kitchen for 7 months, was to ‘interact’ with Isabel, as she fleetingly appeared in the kitchen for juice and food, and not to help me with cleaning or even Issy’s personal care.
No one knows, the role ‘support’ has, is it education, personal care, respite ?
Nor indeed, if they will turn up, or, leave, never, to be seen again.
Nor, more crucially,what the lies/spin, they report back to social services.
Do note, under the Chronically Sick and Disabled Act 1981, up to £82,000, can be claimed, legally, just for Isabel’s social care, and,a similar amount, from the NHS.
If Issy is in residential state care over £4,000 will be paid to her private provider.
Hence, the push for Issy’s independent, away from family living, so this statutory entitlement, in addition to her benefits- housing, mobility, DLA, ILF, CA,can be claimed.
Clearly venture capitalists, have realised the autistic are a gold mine.
But has, or will, all this public money, help Issy ?
It hasn’t so far.
In fact it has caused her problems.
She is still suffering, reignited post traumatic disorder, from her abuse in NAS care, exacerbated, by the fear of leaving her home, and, not returning, created by her first ‘education’ package, who informed her, she could not live with Mummy and Daddy.
As l write , Issy is echoing the words of the same NAS key worker, in the worker’s actual voice, replete with Yorkshire vowels, and, sneer.
Issy must have said to her, ‘Where is Mummy and Daddy?’,
the worker repeats this question, as Issy echoes, in the workers mocking voice,
‘Where’s Mummy and Daddy’, followed by a bellow of,
‘They’re not interested’.
What has been done about this abuse?
Nothing, as denied and usefully to justify antipsychotic medication, interpreted, as Issy hearing voices.
Her 48 bruises in NAS residential school we declared and recorded for all time as self harm.
A National Autistic Society claiming £ 60,000 per annum, up until 24/5/2013, from the NHS, according to an NHS letter to me, despite the fact Isabel returned home, on the 29/1/2013, where she has never received any NHS care.
In addition, a further £60,000, for her education, as education and NHS paid 2/3rds of the £177,000, ‘tax free’ per annum, paid to the National Autistic Society School as a charity.
There was no deduction the third of the year Issy was with us.
We paid NAS pocket money, and towards clothes.
All paid until May 2013, three and a half months, after Isabel returned home on 29 the January .
So much for cost cutting, value for money, and helping the disabled, and their family.
During these years, we were paid £20 per week Disability Living Allowance.
And still only this amount, for 4 months after Isabel had returned to live at home.
Isabel now receives £125 ( reduced to£105) DLA, and I receive £77 carer’s allowance ( reduced to £62.50p), no free nappies, no beds, no nothing….. Just the privilege now, of paying, through the nose, for agency care.
Here are the statistics of number of hours of unpaid care by family.http://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures
Why can family carers not even claim any of their time caring, and worse still any LA support is deducted from the disabled’s DLA.
Who’d want to be a disabled family in this country, think of our plight, when ‘Pudsey Bear’ and ‘Children in Need’ come begging.
The door bell rings.
My heart leaps.
It’s difficult not to be paranoid, when you are secretly and silently surrounded.
But it’s just the nice post lady, a kind, familiar face.
And my fifth letter, 4 from the NHS hospital, and 1 personal one from the GP, about my failure to attend a Diabetic Eye Screening Appointment.
I have not got diabetes; even my 2 GP results 2 years ago were insufficiently raised.
I have no symptoms, but what does that matter.
Truth is irrelevant.
The box has been ticked.
So let us explore, what appears, to be the Local Authorities practice, in relation to capacity assessments, since, the lucrative, ‘independent/community living’, away from family living industry was created.
Anyone, suspected of ‘incapacity’, all autistic, learning disabled, and, mentally disordered.
Including, potentially, anyone in need of ‘special’ education.
Funded under Education, Health, and Care statements.
Which unlike SEN, make the social services responsible for ‘protecting’ a child’s ‘welfare’.
So now, all ‘special needs’ children, are deemed in need of the protection.
Discriminatory of parents and children,in breach of the Equality Act, and,s 8 Human Rights Act.
Strengthening a disabled’s status, as a ‘child in need’, under the Children Act, see my article NLJ ‘The Disability Trap’.
EHCS, also allow care, health, and educations distinct roles to overlap.
And, their funding to be mixed and transparency even more obscured..
SEN/EHCS, do not apply to private schools.
So, the rich, can avoid, state intervention, and, are, allowed, their legal rights.
ECHS, do not fund schools after 16.
Instead, schools are replaced, by ad hoc education packages,consisting of skills for independent living, until 25..
These, combine support at home.
And, these ‘education’ providers, unknown a family, will be charged to notify social services, who approve them, of any ‘intervention issues’.
At 18, Adult Services fund everything.
As, the only LA policy now, is life in for profit, private residential care units.
All decisions are removed from the disabled, and their family by the MCA 05.
By showing ‘incapacity’ to make decisions.
So, the LA will insist, a capacity test is carried out, before, providing any adult services.
So social services, will suggest, your young adult child see a psychologist.
This ‘seeing’ includes a capacity test, but, you are unlikely to be made aware of this and there appears, no duty on the local authority to inform you.
It can also provide, evidence of emotional abuse/neglect, to cut you out of your child’s life.
If you ask for clarification of such assessments, and/or feel them unnecessary, the Local Authority, will apply to the Court of Protection, for an interim order under s 48 Mental Capacity Act 2005.
This application will be served, 24 hours before the court hearing.
Social services witness statements, in support, are not on oath, so not subject to the Perjury Act.
Matters to support this court intervention, can include any reported hearsay, from any source, care workers, GP, educators etc.
The first you may know of these ‘concerns’, will be 24 hours before the hearing.
No one is under a duty to discuss concerns with you first and under a tightly prescribed, managed service will be told not to..
Despite Social Workers and Mental Capacity Act Codes of Conduct, and, the Human Rights Act.
The Local Authority will ask the court for a list of expansive orders.
Including, any assessment and/or inspection, they wish.
If you do not agree, you may be warned your child could be taken that night.
So, you are given little choice.
This, is all an abuse of the MCA, and its five overarching principles, and its Code of Conduct.
The MCA provides, ‘capacity’, must be assessed specifically, in terms of capacity to make a particular decision, at the time it needs to be made.
The LA, will allege incapacity, in respect to the following decisions,
To litigate the proceedings
To make decisions about where they should live
To make decisions about the care they receive
To make decisions about the contact they receive from family members.
Clearly, only the first two, are in fact particular decisions, the others involve several particular decisions, should they have a bath, wash hair, brush teeth, depilate their arm pits etc.
Similarly, family members, are many decisions, to see mother, father, sister, brother, granny.
Remember the MCA provides an assessment should only take place,
‘At the time it (the decision) needs to be made’
But these decisions do not need to be made, at this, particular time.
Just because a person is 18, and now funded by adult services, a capacity test per se, is not allowed by MCA.
In relation, to the last three decisions, the disabled person, will have been making these decisions, all their life, whether to have a bath, sleep in thier home, see their granny.
How can they suddenly become incapable of making these decisions, and, the LA make them for them for them, under the MCA?
How can an assessment be justified, when these disabled, have already made these decisions in the past.
And by making them, shown their ‘capacity’ to make them, just because LA funding, requires it?
In relation, to the remaining decision, capacity to litigate, no one, unversed in law, would have such capacity, and, in any event, it is not be necessary, if the other capacities are present.
The MCA, was not drafted for the convenience of funding, only, independent living provision at 18, and enabling this by illegal removal from the family home.
The MCA was drafted, to protect a person, by allowing another person, to make a decision for them, in the least restrictive way, and, as they thought, that person, would have made it, in that person’s best interests, if thought, that person, had become in capable of making that particular decision, and, it needed, to be made.
The MCA, was not drafted, to declare people ‘incapable’, and, allow all their future decisions to be made for them, for profit.
Or was it ?
What a long, long, week.
As if being up at nights for months, with no personal care, or respite for over 2 years wasn’t enough.
I am now being tortured by the social services.
The snow is thick, my husband had to take the bus to work.
Issy was up at 11.00am, and eventually after much effort in the bath.
And, I managed to get photos of her stomach..
It would appear, all those in need of support, are at the mercy, of any itinerant, zero hour, or, unpaid placement stranger,apparently, desperate, to do the State’s dirty work.
A friend in London told me, carers in care homes, demand ‘protection money’, from relatives.
What a disgusting moral compass is now the norm.
The snow has conspired, to make even walks down the drive scary, Issy doesn’t like slippyness.
Just before noon, the ‘funding lady’, our social workers manger’s manager rang me.
The last thing my psyche needed after Issy’s bath at a moment when she was demanding never ending juice and I was alone.
With the usual infuriating, social worker prescribed conversation,
‘How are things?’.
‘You surely must know how things are’. I replied.
‘You will know more than me, about what’s happening’.
‘The nice affable lady, did not turn up on Tuesday two days ago, and the Lodge Lady hasn’t today’.
‘We received no prior, or post notification, or indeed, any communication from anyone.’
‘Except from our adult social services social worker, and GP, demanding to see a non- existent lump on Issy’s tummy’.
This is the ‘intensive, specialist, highly expensive service’, provided to an autistic girl, not yet out of the trauma, the state, for the second time, threw her in’.
The funding lady, then tells me, I have ‘strong opinions’, and, the workers had not felt ‘comfortable’ in the house.
They had not mentioned or looked as if they were ‘uncomfortable’.
Let alone why .
Its non- stop coffee, tea and chats, magazines, and two books on autism lent, and, never returned.
And, they do what they want with Issy.
I have spent the last two years, having all my cupboards rearranged, without asking, and my washing machine broken.
Being a complete tit, I have given away dresses, shoes, coats, tops, CD radios, face creams, shears, masses of legal advice etc. mainly to the lady, who had the first hissy fit.
10 Nintendo games to another worker who befriended Issy, groomed me, and after an outing with him, Issy repeatedly asked,’ Why do men like having willies up their arse?’.
He was never seen again, as not offered ‘education’ work, (more money and security).
Poor Issy has been so let down, by the itinerancy of workers, but, her fate would be much worse in ‘independent’ living.
And,Lodge Lady ( the latest since November education support worker), had arrived daily, with a Private Eye, or, internet article, or, own experience of a care scandal, to elicit/encourage my ‘strong opinions’.
I remind the funding lady,
‘as zero hour workers, every worker can be specifically chosen, and prescribed’.
She retorts, ‘they are all individuals’.
So the inference is the 30 + previous agency workers, must all have felt ‘uncomfortable’…. For 18 months…. but this, was the first I’d heard of it.
She tells me the affable, independent of the state, with a conscience lady, does not want to support Issy anymore.
So why did she choose Monday, without warning to leave ?
Why did she make me chutney and chat so freely never mentioning her ‘uncomfortability’.?
It was a loss, as she loved the autistic, and Issy liked her.
But she had said ominously, she, ‘had nothing to do, with ‘education’’.
Now, we know why.
I assume, she didn’t want to get involved in their dirty tricks, of the lucrative, independent of family living, industry.
I noticed the nice workers disappeared.
One, had a two week mystery illness, just when the trainee and social workers, were moving in for the kill, but, had a hissy fit, never to return.
I suspect, their reputable international agency, were worried about bad PR, from this blog.
Their head office, monitors the net, and had picked up my mention of their name, as a zero hour employer, in a Guardian comment, and, had banned me, from naming them on social media.
Such is the self- preservation, of our all-powerful, privatised monopolies.
The funding lady asked, if I would consider, having Lodge Lady, and a new worker.
I told her to read my blog, and then objectively decide, whether, she would.
She replied she didn’t read blogs.
Issy was demanding juice, the bath was run…. I did not need this.
I mentioned all this.
Which she must have already been aware of from Issy’s shouts.
Eventually, I forced an exit.
But the phone rang 20 minutes later.
She had read my blog.
And some points were incorrect.
It was not the Adult Social Worker, who had rung the GP, but her.
So much, then for her asking last week, what she could do, to rebuild my trust in the social services.
But, did not explain why the GP, had given the social workers name.
Nor why, the same social worker, rang us earlier reporting the lump.
Nor, why this was so important.
Secondly, she said the blog incorrectly stated the support worker, had not discussed her concern, when she had.
I said, read the blog again.
The worker had pointed out a non-existent bulge.
And then, when I, and the affable lady, had said it was pre period swelling, had said no more about it during the 4 hours that remained of her shift.
She had not pointed out,‘ a red mark, the size of a fist’ as was reported to the GP.
I couldn’t bear this cross examining sophistry any longer.
And Issy needed attention.
Why was no one concerned about her ?
‘For the mother of God’, I cried.
And Issy on cue, decided the phone had to go back in its place, and grabbed it.
That night, I reflected, on what the GP had actually, been told.
I had been distracted by the impaction discussion, and the bulge comment.
I analysed the reported ‘concern’,
‘A red mark on the side of Issy’s tummy, the size of a small fist’.
I realised, it wasn’t describing a bulge,
It painted, a shocking picture, of abuse.
It could not be accidental, self-harm, or, neglect.
It was on soft tissue.
It could only be…………… a punch.
And, as small, my fist, as the primary carer, and most alone with Issy.
How might this be made to appear in court documents;
‘An education worker, who had formed a good relationship with Issy over several weeks of support, and, had just managed to get her out of the house for the first time in 9 months, noticed a red, fist sized mark on the side of Isabel’s stomach.
She pointed it out to her mother, who ignored her.
So she reported it to the social services, who rang the parents, but they would not let them see Isabel, so they rang the GP, but the parents also refused the GP’s request to come to their home and examine her.
The GP, now very concerned for Isabel’s safety, arrived at their home, he was verbally attacked by the mother, didn’t manage to examine Isabel, as she refused to undress, or cooperate. (but did see her running around happy not in pain).
The mother then refused any more support, or engagement with the social services’.
I had walked right into that one…..
If I did nothing, as photos can be air brushed, this would be taken, as irrefutable evidence of a vicious assault.
And we would be cut out of Issy’s life for ever.
The LA would have their £6,000 +a week, cash and pharma cashcow, the Lodge Lady a career path, a loving devoted mother destroyed, and a father heartbroken, never to see their child again unsupervised.
And Issy doomed to live in an abusive hell, alone.
Such is evil.
Such is morality.
Such is adult state protection costing millions
And the danger of care/education workers.
I rang the GP, apologised, and, asked him round to try to re -examine Issy…..
He arrived but did not touch her stomach only viewed for marks
Yet recorded later in Issy’s medical notes that there was no hot bulge on her stomach.
Education workers mentions Issy’s stomach bulges on one side
other workers agrees with me that due to her due period.
Not mentioned again by Education Worker to me during rest of her shift
Education Worker notifies social worker ‘Issy has red mark size of small fist on her stomach’
SW rings GP attends , observes Issy’s stomach but does not touch her.
Yet records in notes hot bulge at side of stomach with no explanation/follow up
Neither worker is ever seen again.
I am in a nightmare.
Issy has been taken. She was no longer in her bedroom.
It hit me. She was gone. I cannot find her.
Worse still, what was happening to her?
What horror was she suffering?
Her pain, unheard.
And, I cannot help her.
She will never be home again.
Could I bear to see her, if they let me?
She is in her bedroom.
Pheww….. I make a coffee, and write this.
It is my one day without the ‘education’ package.
Which, we have had now for three weeks Monday 10-1 , Tuesday 11-1, polished, affable PA of measured lady, who holds our ‘pot of money’,
10-4, 11-4, Monday, Thursday, Friday, with lady sent up from The Lodge ( Issy’s proposed 2 day a week ‘school’), replete with I- pad, keyboard and bubbles.
Lodge Lady is doing an autism MA at Hallam, but has a music degree.
I suspect Issy may be an unpaid placement, but am told she is not.
Neither, were given Issy’s care plan, I managed to force on the measured lady, and, appeared to know nothing about Issy, so all is repeated again.
Despite this, The Lodge lady, asked a string of questions, and, on my becoming exasperated, opened her arms out to give me a hug. ??
All is bizarre, prescribed, and controlled.
Impersonally, too personal.
Issy remains in her room most of the time, has banged the keyboard a few times, and made sparkles on the ipad, and likes being tickled by the Lodge Lady.
After a two week break over Christmas, both returned.
Bizarrely, neither ask about Issy.
The modus operandi of no enquiry, let alone discussion, of Issy ’s health, sleeping, eating, behaviour, as for the previous workers.
Clearly their must be a reason for this.
Yet, on Christmas Eve, the Lodge Lady, unconnected with anything, asked, ‘How do you cut Issy’s hair?’.
Their role and agenda, are unknown.
But, it is clear, they are instructed what to ask, and what not to talk about.
Conversations stop dead, or, are rudely diverted, on certain topics.
If you mention this, as tactfully as possible, faces are attentive, but blank.
And no matter how dire the situation, Issy in bed till late, distressed, up all night, and no respite, the farewells of,
‘Hope you have a nice weekend’, are never customised.
It is now Thursday, the lodge lady arrives.
I now, deliberately, do not mention, anything about Issy.
And again she does not ask.
Issy was in fact, up all night.
In my bedroom light on, for juice once, crackers and cheese twice
Education funding, as stated in Issy’s March ‘education’ report, is available until March 2015, provided parents consent.
We withdrew our misappropriated consent in April, and appear to have no option, but to consent to this latest incarnation, but suspect, the full funding, will still have been claimed, on the back of this latest provision.
Who checks the LA’s accounts?
We have no other support, or respite.
Our social worker rings, her first contact since October.
‘I thought I’d ring to see how things are going?’
‘I am having a meeting with the Measured Lady tomorrow’.
Why, I am not told.
Yet, this lady has my pot of money and employs her worker, supposedly chosen by me , and provides the package by my express consent.
And meets with my social worker.
Behind my back.
I reply, ‘as our social worker, you should know how things are going. As should the Measured Lady, if not, there is no point in you meeting’.
‘I thought, I’d ask you first’.
‘As you should know from the workers, nothing much has changed, Issy still won’t go out’.
‘And I still haven’t heard anything about my complaint’.
She replies, ‘But X has sent you a letter’.
‘Yes, it was not about my complaint’.
‘I can’t comment on that’.
‘As X told you she is concerned about Issy, and why she is not going out’
‘But I didn’t give permission for X to be in my house to observe Issy for intervention issues, but to visit about my complaint. ‘.
The social worker agrees.
’Would Issy be prepared to see a psychologist, to find out, why she is not going out?’
‘How could they achieve this, when no one else has ?’
‘I don’t know I’m not a psychologist.’
‘’The first thing, she’d need to find out is what happened on the days, just before Issy stopped going out. And no one has or is willing to’.
‘It was the education packages push to her ‘independent’ living that caused all this’.
‘Well what do you want for Isabel’s future?’.
‘Surely, by now you must know. I have told you, and everyone often enough. What anyone would want for their very vulnerable daughter, to be at home, cared for and loved by her own family, where she desperately wants to be’.
‘But surely you don’t want her to stay in her bedroom for the rest of her life’.
I am the abuser, keeping Issy, in her bedroom.
I left it, asking our social worker to send a letter from the psychologist, stating the purpose of her visit, her qualifications to fulfil this purpose, and what she intended to do to achieve it, and for the psychologist to be briefed accurately, as we would like to be, on what happened on the days, now 9 months ago, immediately before Issy stopped going out.
I did not receive one.
I also asked why, we hadn’t had a single hour respite from any agency, since October.
She said she hadn’t wanted to disablise Issy, a different excuse from the last, of being unable to find an agency willing to support.
SEN, special educational need statements have now been replaced by EHCs, Education Health and Care Plans..
This seemingly superficial mnemonic change hides a multitude of sins.
Funding for special needs day schools after 16 no longer exists.
EHCs are not subject to OFSTED or tribunal challenge and providers are untested, unregulated, and unassessed.
The Local Authority fund, whatever ‘provision’ they choose, and, they alone, decide its adequacy.
A clear conflict of interest, and, recipe for corruption, and, inadequate provision.
As Care is now part of special education needs statement social services are involved in a child’s education reinforcing the treatment of autistic/LD as automatically ‘children in need’ because of parental neglect/incapacity/abuse.
The LA can intervene, at any time, and remove your child by court order to care if under 16, if over to ‘independent’/community living.
So the draconian power of the state is by virtue of the Children and Families Act 2014, now incorporated into education, and, can be used to silence any criticism, or dissent.
At 16 special needs schools are replaced by ad hoc unregulated ‘education’ packages, that teach only, ‘independent’ living skills which most already have ie eating properly, helping cook, getting drinks, sorting clothes, throwing out rubbish.
My daughter’s ‘education’ skills were inter alia table manners, carrying a bag, mixing a cake, getting her own coffee and juice, all things, she could already do, if she wanted to.
‘Independent’ living is heavily risk and health, and safety assessed to avoid legal claims and maximise profit.
And requires residents, to be supervised at all times, so most of these skills will never be used or indeed needed except to make support cheaper and more profitable.
So at 16, all special needs teenagers are deprived of everything a school, and its community have to offer, and taught ‘skills’, they already have, until they are 25.
All deeply patronising, and discriminatory to those deemed to have ‘learning difficulties’.
And a good tick box, unaccountable source of income.
Norman Lamb’s consultation on the implementation of the strategy for adults with autism in England, published earlier this month promotes this system, by providing money, to train the trainers and create, and teach ‘employability’ skills.
An industry, has already been created on the basis of these ‘emperors clothes ’ and is set to increase.
It would appear from these initiatives;
Disability, will create jobs, but not for the disabled.
Spends money, but not on schools.
Isabel, is now on her second ‘education’ package.
It is now 8 weeks, since our ‘education’ package meeting, I posted about in, ‘Where is the cavalry?
The owner of the provider company, asked to meet us again the Monday after that meeting.
‘What we thought of the meeting?’
I replied it served no purpose.
She made no comment.
She continued with questions about Issy’s care and communication, my advice, the same as in our 2 hour meeting in August, only this time she took notes.
It occurred to me, but apparently not to anyone else, that Issy’s care plan might be useful, so I provided it.
She had neither asked for it or been provided with it.
Three months ago, both the LA education manager, and this measured lady, confessed to knowing little about Isabel, and, it would appear, nothing had changed.
Why, still no sharing of children in need meeting minutes, care plans, education report, or liaison with Issy previous education package manager.
She left promising to send her ‘proposed plan’.
It arrived via email two days later.
It was less than one side of A4, and consisted of 3 stages, the first concluded,
‘ we are not able to make a reasonable long term plan, as we don’t yet have IB’s voice to influence and shape such a plan’.
The third concludes,
‘Our aim is to build sufficient trust and confidence to encourage IB to start getting out of the house and to start attending Yewtree House. At this stage will aim to make another, longer term plan which will be shaped by IB’s voice’.
This plan, gave no inkling, as to how, she proposed to do this, or even the hours, or tasks, the PAs, would undertake, nor in what way we, as promised, employed them, nor mention of the ‘pot of money’, the LA funding lady, had repeatedly told us, this lady, held on our behalf.
And it had taken 7 and a half months and 9 hours of meetings to get it.
And, it appeared, excepting, to allow Isabel’s voice the same as the previous ‘education’ package.
But, instead of an agency worker, and an assistant teacher, and the package’s office, we had 2 PAs, and, an empty Lodge.
‘is a longer term plan going to be shaped by ‘Isabel’s voice’?
And what was that plan?
LA funding, facilities and policy, appeared to allow, only one future plan, the suggestion of which, appeared to have forced Isabel into her bedroom for the past eight months.
Was Issy’s her voice, still not loud enough?
The lady, who owned the education package company, insisted on introducing her two PAs, necessitating, two more meetings in the kitchen.
Despite in August, exclaiming,
‘I could get 2 PAs in tomorrow, but things had to be done properly, and it won’t be cheap’.
Our social worker had emailed, without being asked, that the PAs were not CQC approved, restraint trained, nor risk assessed , so could not be left alone with Issy, nor support me with Isabel’s personal care.
Why not ?
The measured lady, arrived in the kitchen, with the first PA, we were not informed, if she was, as stated in the plan.
’The person who would be stepping into the role of senior PA is highly skilled in intensive inter reaction’
The Measured Lady greeted us with the usual,
‘How are things?’
My husband shrugged his shoulders, with a
‘What can you say’.
She looked bemused, but, made no comment.
Our proposed, ‘Mary Poppins’, was slight, quiet, appearing in her mid twenties, and, wonderfully unobtrusive.
I told her she had a heavy burden resting on her shoulders.
But she remained silent.
She declined coffee, so I made some without asking, for her boss.
As no one spoke, or asked, I wittered on about Isabel… in bed, lack of appetite.
The slight ‘Mary Poppins’ to be, confessed she knew nothing about Issy.
There’s a surprise.
Their silence forced more wittering by me, lack of any medical care, 3 such Isabel’s dying needlessly a week, but still no reaction.
The slight lady asked if she could go into Isabel’s bedroom, so I took her in, and, not wanting to interfere with her, hopefully, magical powers, I left.
She returned to the kitchen, several minutes later, without comment.
Surely a good sign ?
Later, she went in again, this time without asking, a really good sign.
Two days later, the second PA was in the kitchen.
Some bad news, from the measured lady.
Our proposed ‘Mary Poppins’, had, on her first visit to Issy’s bedroom, sat on her bed.
Aptly, singing along to Issy’s Mary Poppin’s DVD.
Issy had probably told her to go, as she did sometimes but then had pulled her hair which Issy rarely did.
Maybe this incident never happened it was an excuse as this young lady did not want to be part of spy and remove?
The truth can never be known.
A new PA had to be found.
All our meetings, Issy’s background, which she was ignorant of.
And common sense, had not stopped her sitting on Issy’s bed on a first meeting, and staying.
Our remaining PA was to come on Mondays and Tuesdays, but, no specific times or hours, were mentioned.
I suggested later in the morning, so the remaining PA, a sophisticated, polished, extremely affable young lady, promised to see me at 11 am, the following Monday.
She arrived at 11.20, and Issy was up.
Having been up all night.
She stayed in the kitchen, I made her a coffee, and chatted.
Issy came in three times for juice, and the PA left.
On Tuesday, she arrived later, about 12, and stayed just over half an hour, Issy was not up.
She said, she’d come on Friday, with the beads, she threads, which Issy might want to join in with.
The measured lady, rang on Thursday, asking if we could meet the next week, to discuss how things were going.
I updated her, and, that her PA was coming tomorrow. She said good.
But the PA did not arrive on Friday, so I thought she must have meant Monday, but she didn’t arrive on Monday either, and there were no phone calls.
She eventually arrived at 3.30 on Tuesday, with no mention of Monday, or Friday, nor why she was so late.
Issy, was still in bed, so she sat on her bedroom floor for half an hour, Issy told her to go, and she left.
On Monday the PA arrived at 12.40 pm and stayed 40 minutes, chatted over a coffee, and stood in Issy’s bedroom, whilst I tried unsuccessfully, to get her up.
She asked, if it was OK to come again around 7.00 pm sometime, but not which day.
I said she could drop in, whenever, she wanted to.
But she didn’t drop in not even on her designated Tuesday.
On Wednesday, within hours of us, relaying this to the social services complaint investigator, in a meeting about our formal complaint in June, the LA education coordinator, emailed me.
He had spoken to the measured lady that Monday, and,
‘She tells me that there has been some progress and the support worker is starting to build a relationship with Isabel.
Our aim is to introduce staff from Lodge, and eventually use this, as a base for Isabel’s learning.
Please let me know if you think we are able to accelerate this process or have any suggestions on how we may be more effective’.
In reply, I emailed back the specific times and outcomes of the PAs visits.
He emailed back.
’Thank you for the update and I will discuss with (measured lady). What do you consider to be most appropriate times to be engaging with Isabel at present?’
Such, is special needs ‘education’.