Rip off social care.. the plight of the disabled family.

ghost

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.

She didn’t.

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.

Issy  in nursery

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The Love of Money…….

Since Isabel’s diagnosis, her state ‘support’, except for her  outings from May 2013 to March 2014.

Has been enforced containment in a NAS residential school £177,000 tax free for 9 months a year for 5 years,resulting in psychological, physical, educational, medical abuse, and neglect.

All was, and is, impersonal, bureaucratic standard letters, meaningless reviews with no attempt at humanity, changing stories,  covering up and lies.

Over 25 workers, have been in my kitchen.

Some daily for months, never without noice to be seen again.

Disappearing, without explanation.

I am not  allowed contact details.

How must all these itinerant ‘relationships’ affect a traumatised autistic teenager ?

We have been processed, through a ruthless, self-preservatory,  machine.

Issy has had 10 social workers, 3 independent reviewing officers, 4 speech therapists, 4 educational psychologists, 3 psychiatrists, 2 paediatricians,  1 CAFCASS Officer  and innumerable meetings, and reviews.

Which produced;

7 mouths respiridone medication, inappropriate, regressive, enforced ‘education’, 2 faecal impactions, 2 rotten teeth, a  48 bruise restraint,  PTSD, and now a refusal to leave her home.

Costing the public purse, well over a million.

Causing far far more problems, than her autism..

Had Issy been afforded proper medical treatment, education ( Brentwood the private German owned autistic school five minutes walk from home), and community support, from dedicated people, that  understood her, Issy would not be in the sorry state she is today, and, have suffered so much.

The  final straw, was an education package, telling her, she could not live with Mummy and Daddy.

This is the real scandal, and, the tragedy.

She would not have had, two faecal impactions, which both coincided with inappropriate care, one after ill- advised respite in her special needs school in 2006, the other in 2011, after a forced attendance, and a long wait at her GP’s practice, produced a meltdown, that necessitated a 48 bruise restraint.

The symptoms of these impactions,  ignored for years, and would remained so, had, it not been for our continued insistence they existed.

And our insisting our GP physically examine Issy’s stomach.

Issy’s NAS home also caused, and failed to notice her rotten molar and wisdom teeth.

And, fed an impacted child, ‘build up’ drinks which cause constipation.

We will never know, and no one will ever investigate, the permanent damage this neglect, may have caused poor Issy  physically and mentally.

And agencies/professionals refused to connect, the pain, and discomfort, of  impactions, to Isabel’s increasingly aggressive behaviour.

Instead, blaming her autism, to justify psychotic medication, an enforced 52 week inappropriate, school placement, and, a proposed 12 week CAMHS’s residential assessment, to enforce permanent psychotic medication.

This, enabled NAS, and CAMHS, to claim the maximum, from the public purse, and made Isabel’s ‘care’ easier to manage.

And off  social services books.

All was and is prescribed process in self interest and very much not in Issy’s interests.

In January 2013, had we not insisted on Issy coming home for the weekend, when her social worker said she was ‘too distressed’.

And a kind van driver, had not risked snow and ice, and, waited an extra 20 minutes, Issy would have been sent to a CAMHS Care Pathway Centre, Ruby Lodge for an assessment.

Social Services, and NAS had tried get our agreement to this for weeks.

Our permission, could then be dispensed with, by sectioning under the Mental Health Act.

To allow, £60,000 to be spent on, an illegal, as her IQ is well above 50, 12 week residential assessment.

In addition, to the £177,000, still being paid to NAS.

Issy would have been medicated with anti-psychotics for ever, despite it being licenced only, for short term severe behaviour.

This policy of sedation, chillingly promoted, in Ruby Lodge’s promotional materials, as the use of the

‘least restrictive alternative’, and,

Finding alternatives to restraint’.

With an outcome of,

A care plan that indicates the least restrictive alternative’,  ( powerful neurological suppression by anti psychotics ) to impact on ‘frequency, intensity and duration of challenging behaviour’.

Their discharge list including,

Medication/prescriptions to cover two weeks post discharge’.

Such Care Pathway centres, have been built all over the country.

Now ‘specialist hospitals’ in monopoly, enforced community living like Lifeways/ Cambian.

These centres/specialist hospitals are where Issy would be sent, if we, or the care workers were attacked, or Issy’s behaviour worsened, and we rang the police, the only option, we have ever been given by our GP, and social services.

The psychiatrist, who heads up this multimillion pound lodge complex, is no other, than the CAMHS psychiatrist, who prescribed Issy’s ‘off label’ Respiridone trial at 9, without our informed consent, as we were not told it was a trial.

She dismissed Issy’s side effects of crying, breathlessness and incontinence, as not side effects, as not on her list.

Issy had received no physical examination.

And when we had complained, we were served with a court care supervision application order.

One of side effect of anti-psychotic medication is constipation.

And at 7 stone, Issy still be being fed build-up drinks, 70 bottles were dumped in our kitchen on Issy’s return, cause constipation.

Issy’s impaction, was unacknowledged, and greatly acerbated, and now zombiefied, she would have been unable, to express her suffering, even by aggression.

It could not have been long, before she succumbed, to a long painful death, on her body filling with faeces, forcing her organs to close down.

As so many autistics have died before, unseen, unheard , no inquests, dying of ‘natural causes’, no serious case reviews,  very expensive state murders, silenced for ever.

Issy’s GP wouldn’t, and doesn’t visit residents for their £177,000 per annum.

When we complained of this, the Independent Reviewing Officer told us, it was our duty to arrange medical care at a distance of 25 miles.

We tried, but got nowhere.

A locum was prepared to visit the NAS home, but then left the practice.

One of the dedicated carers, who disappeared, before the final onslaught said, on my bemoaning enforced independent living,

‘She wouldn’t let them look after her dog, let alone her child’.

If Issy were a dog, the RSPCA would have prosecuted her state carers, yet it is the threat of care, and ‘best interests’ MCA orders, that have facilitated Issy’s abuse.

There can be no whistle blowers, and social and medical care goes unchecked, and is unaccountable.

The conflict of interest between, what is best for CAMHS, GPs and NAS,to make as much money as possible, and impose a government system  and what is in Isabel’s best interests, flaws the system.

The state, have complete control.

And, I dread the thought of Isabel’s future.

Physical medical examinations are perfunctory,  by a  nurse/practioner.

50% not even given this superficial observation, if deemed to refuse permission.

Medical conditions, and treatment are not a ‘domain’, in the adult services forms for independent/ now ‘community living’.

There is no central audit, or, control of this medication by anti- psychotic and mood enhancers.

The administration left to individual GPs and CAMH’s teams.

Administered without physical examinations.

No wonder 3 learning disabled die needlessly each day.

It is now three weeks, since the agencies workers, had a hissy fit, and the agency without reason, withdrew their contract.

And over two weeks, since the last email from our social workers, stating she had been unsuccessful in obtaining any other agency cover, again without reason.

No matter how poor, or abusive the service, the provider is paid up front, and there will be no reimbursement of the £200,000 spent on Issy since 2013, nor, the million spent before that, on her abusive NAS residential school.

Under s2 of the Chronically Sick and Disabled Persons Act 1970, £82,000 can be paid per annum for Issy’s social care, and under the Education Acts more than 50,000, even without SEN until she is 25, and some £73,000 from the NHS.

The funding for her £177,000 NAS school, split between the 3 authorities, and judging by the NHS ringing me last month, to request a home inspection for her continuing health care checklist, this is set to continue in independent living.

Yet, we, can only claim £200 in DLA and Carers Allowance per week, and personal services of 7.50 per hour and administration fee,if we could find our own staff.

Such is the huge financial incentive to encage Issy.

And  the potential for abuse and corruption.

Issy, is a huge cash cow.

And, the love of money, really is, the root of all evil.