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 most of 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, an average of £3,500 per week, can be claimed by the 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.
The National Autistic Society was claiming some £ 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 (62), 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, as with me, 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.