A Life without Choice , let alone, ‘Independence’

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The Law on Capacity

The Mental Capacity Act 2005, purported to empower.

The Act, presumes, everyone,  is capable of making a particular decision, until, there is evidence, on the balance of probabilities, by a prescribed assessment,  that, they are not.

As a capacity assessment,  removes a person’s fundamental freedom to  choose.

It should only be undertaken, if ‘incapacity’ is suspected.

And, must only be  of  a person’s ability, to  make a specific decision, at the time that decision needs to be made,  in his best interest.

This assessment,  or, suspicion of incapacity, must not be based, on a person’s mental condition and/or presentation.

Further, the Act’s overarching principle provides;

A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success’

S1(3), and, see also s3(2) MCA.

This requires, as much as possible , to be done,  to maximise a person’s capacity to make the particular decision.

And, to avoid Article 12 EU illegality, ‘substitute decision making’, a joint decision, should be attempted before capacity is assessed.

Assessments, should take place, in a familiar place, and, be by a familiar person.

With the assesse, in optimum physical, and emotional health.

Unless in an emergency situation.

An assessment , can only, relate to a person’s capacity, at any particular time.

Capacity to make, a decision, can be regained.

The Mental Capacity Act, is the only Act, as far as I am aware, that allows, the state, to remove a person’s autonomy.

Prior to 2007, the High Court had such power, but, only if, necessary, in a person’s best interest, and, it was used, exceptionally.

Decisions of the autistic, and vulnerable, were generally made by them, with the help, and, protection of their family.

The Reality Since 2007

As early as year 9, parents, will be introduced to a person from ‘Transitions’, at their child’s SEN review.

This person’s function, will not be explained, other than,  autistics/ learning disabled,  find ‘transition’ to adulthood difficult, and, they are there to help.

At 16, your child’s full time school, is no longer funded.

Despite SEN ‘Education’ funding continuing until 25.

Instead, independent living, and employability skills are taught, and, a base building provided.

Most children attending a special school, will automatically, be deemed ‘incapable’, of making  decisions, as to their welfare,  and, finances, by social workers, and GPs  .

As these assessments, are neither time, nor decision specific, and, usually based on their  conditions of autism, and/ or, presentation,  they are illegal.

Even if, a formal capacity test, is undertaken, it appears, it need not be completed, as required by the Act, as the standard Local Authority Assessment Form provides;

The assessment should end if the person is unable to progress through the functional test. For example if a person cannot understand the decision they will not be able to retain it, weigh it in the balance or meaningfully communicate a decision’.

https://finolamoss.wordpress.com/2015/03/03/standard-capacity-assessments-stephen-hawking-would-fail-without-his-box/

All that needs to happen, is a person be asked ,  do  you know why, you need your medication, or, do you know why you need to pay your disability allowance into your own bank account.

And, show no understanding, and, their reaction noted.

So, effectively, once a person has, an’ impairment of mind’, which the Act makes non- exhaustive, and extensive,Unless, they are a good communicators, with knowledge of modern procedures, and medicines, they are doomed.

It must also be considered, how many non- SEN teenagers, would be able to answer  such questions.

As this standard LA test, is neither time, nor decision  specific, needed, and, can only, if abandoned so early, be based on a person’s condition, and/or presentation, it  is illegal under the Act.

Protection of your child’s ‘rights’,will be tick boxed, by the appointment of his own Independent Mental Capacity Advocate.

Whose only function, is to  explain what is happening to him, and his rights.

Quite what these rights are, is unknown, as the incapable, do not appear to have any under the Act, other than, to consultation.

And, your child’s ‘Advocate’, despite his name, cannot take part, in the decision making process.

At 17, you will be consulted about your child’s, away from home for life placement, but, at 18, it is ‘inappropriate’ for you to make decisions for him, and, you have no right to do so.

https://finolamoss.wordpress.com/2015/07/07/autistic-parents-have-no-rights-and-the-private-corporate-parent-is-unaccountable/

As your child, lacks the capacity, to make his own  decisions, adult social services, will  make them, and, decide what placement is, in his ‘ best interests ‘.

If  you object, to your child living ‘independently’, or, are unhappy with the chosen placement, the LA will make an application to the Court of Protection,  as your child is ‘incapable’ of choosing where he lives.

If you insist he is capable, and wants to live at home,  the court, will declare, your child ‘incapable’ of all decisions, past, present and future,  and, that it is, in his  best interests, to live in whatever placement, the LA provide.

All his future decisions, will then be dictated by his Care Plan.

Even down to how many baths he has, when he takes them, and, how he is cleaned.

Subject to reviews, this will be, for the rest of his life.

This is his ‘independence’, and, empowerment.

The need for a Deprivation of Liberty Order each time a person is locked in his room or supported living facility is not required by the MCA.

So, despite the Magna Carta, Human Rights Act, Equality Act, Disability Discrimination Act and United Nations Convention, millions, now, and in the future, will be encaged without due process.

A Horrifying Abuse Scandal

And, Supported/independent living, is now, the only policy, and support provided by Social Services.

The House of Lords Select Committee on Mental Capacity Act 05  report

Extract from Hansard on no monitoring of substitute decision making by care provision.

98.  There were also concerns that a decision-maker could assume too much power, and sometimes on the basis of questionable legal authority.

Sheffield Safeguarding Adults Board pointed out that

once a person has been deemed to lack capacity to make a decision they become vulnerable to the opinion of the decision-maker and when those decisions are not reflective of their best interests it often leaves them powerless to challenge“.[157]

This was echoed by other witnesses, who expressed concern over the use of the ‘general defence’—the term often used to describe sections 5 and 6 of the Act (Acts in connection with care or treatment and Section 5 Acts: limitations)—which provides protection from liability for carers and others to carry out acts in relation to a person who lacks capacity.

The pre-legislative scrutiny committee foresaw problems with these sections, which were at the time entitled ‘the general authority’.

They worried that it would wrongly give the “impression that the general authority would be assumed by a single individual who would then take all decisions on behalf of an incapacitated individual”.[158]

In response, the Government removed the term ‘general authority’ from the Bill, but concerns have persisted since implementation.

Professor Phil Fennell and Dr Lucy Series described the general defence as providing “tremendous discretionary power” which was “not subject to any routine monitoring”.[159]

Liberty expressed concern about the very wide range of decisions which could be made under these sections, combined with a “worrying lack of oversight”.

And these decisions, are being made on a business efficiency model, in secret, by large private monopoly care/ supported living provision, with no oversight by the courts, only the Adult Services Managers,  employed by the LA, who commissioned the service, and, would therefore, be liable for its inadequacy, so a huge conflict of interests.http://ukhumanrightsblog.com/2011/11/17/severely-disabled-mans-care-plan-is-not-a-deprivation-of-liberty-says-court-of-appeal/

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Stephen Hawking, and the difference between ‘Capacity’ and ‘Competence’

Physicist_Stephen_Hawking_in_Zero_Gravity_NASA

The Mental Capacity Act defines capacity as,

the ability to make a decision’.

Whilst competence is defined as

the ability to do something successfully or efficiently’.

Competence is a far more expansive creature.

It is the ability to execute a decision, after it has been made .

If we run the two together, at most, the definition of capacity, would be,

‘ the ability to make a decision, successfully’.

Not to be indecisive, like Hamlet

But indecisiveness is excluded from incapacity under the Act.

The Act, was not titled, The Mental ‘Competency’ Act.

Despite this  the MCA capacity test requires a person to understand the reasonably foreseeable consequences if he were to actually execute his decision once made.

This requires far more, than the an ‘ability to make a decision’ as  ‘capacity’ is defined by  the Act. As it requires the competence to perform the decision.

This is a person’s competency not his capacity .

Such a distinction may not affect the assessments of delirious patients, or, the alzheimer confused, to consent to medical treatment. .

But, even here, the capacity test allows draconian and dangerous removal of any patient’s autonomy.

And prevents any questioning, of medical diagnoses, and/or treatment.

Were Ashya King, an incapable adult, he, nor, his parents, could, have availed themselves of laser treatment, and, he,  might now, be severely disabled.

http://www.dailymail.co.uk/news/article-3148042/Cancer-patient-Ashya-King-six-parents-arrested-taking-abroad-pioneering-treatment-UK-given-clear.html

The  MCA Code of Practice worrying  provides a  denial of  medical or mental diagnosis to be possible evidence of   incapacity to consent to treatment.

Jack Nicholson, in One Flew Over The Cuckoo’s Nest, would, therefore, be deemed incapable, of consenting to his treatment, because of his denial of his non existent mental disorder.one-flew-over-the-cuckoos-nest-movie-poster

The MCA Code gives little guidance on assessing capacity when considering proactive decisions.

Stephen Hawking ’s capacity to decide to go into space, or out into the community, without his wheelchair..

Or, an autistic adult’s decision to go out into the community alone.

Are decisions both have the capacity to make but not the competency to perform.

If, they were to insist, they did have such capacity, this would be evidence, this would be evidence, they failed to appreciate, the consequences of their decisions, and, were therefore under the functional assessment,incapable.

Although Professor Hawing’s incapacity, could, not be caused by an’ impairment of the mind’, as unlike an autistic, he has a voice box.

As the Act, likes to have its cake, and eat it, it states, reckless decisions, per se, are not evidence of incapacity.

The MCA capacity test is not about capacity, but competence, safeguarding, and control.

And discriminates against the disabled by using, a disabled’s person’s inability to execute a decision, against him by conflating, incapacity with incompetence.

Parliament appears to have modelled, this capacity test, on the test used, to assess a child’s competency to give evidence.

As section 53(1) of the Youth Justice and Criminal Evidence Act 1999 (YJCEA 1999) povides:

A person, is not competent to give evidence in criminal proceedings, if it appears to the court, that he is not a person, who is able to understand questions put to him as a witness and give answers to them which can be understood [section 53(3)].

Having lectured, this for twenty years, I can attest, it is a minefield of semantics.

Case law, arguing, it is satisfied, if a child can distinguish, between ‘fact and fantasy’ ie they know teletubies are not real.

Santa Claus?

And, a child must appreciate, the importance of telling the truth, and the consequences in court. as opposed to a social occasion.

Truth is truth?

Suffice it to say, the competence of a child, is a vague, subjective exercise, for a judge to assess, on questioning each particular child.

So one can but wonder, why, Parliament, chose, a similar blunt, subjective tool, to potentially remove, anyone’s autonomy for life in most cases.

Could it serve the real purpose of the MCA ?

‘The Million Dollar Kid’

0_jLe33ZKodNIffjIdA Mum twittered last night, her autistic son, is nicked named, ‘the million dollar kid’ for the £12,500 per week; he earns for his ‘Treatment’ Unit owners.

Yes, you read correctly.

How could such a sum be justified?

Obviously, because it needn’t be.

And, where, in that sum, is the incentive for effective treatment?

Payment, of such sums makes a nonsense of cost cutting, austerity, and reduction of our deficit.

Another Mum, excitedly decorating  her autistic son’s bedroom, his care package, months in the making, having finally, allowed him home, for his 18th birthday, and Christmas, and, forever ?

Smashed to pieces, in yet another faceless meeting, when ‘they’ decided, her son, needed an adult hospital, and, not the love, and care of his family.

No doubt, the effect of this news, will justify, even more medication in his £4,500 per week, tax free, hospital placement.

Whilst, he tries to cling, to the memory of the love, peace, and security of the home life, he was ripped from.

On his refusal to be ‘assessed’, two…….. long years ago.

Autism, cannot be ‘assessed’, or ‘treated’.

It can only be lived with.

With the care, and love, only parents, can give.

Many, many, more such Mums, Dads, and, autistic adults, are out there.

Bullied, powerless, destroyed by the state, to make extortionate private profit, from public funds.

If there were a word for it, obscene.

Beyond shame.

The state have created, and, found, the perfect market, their children’s future.

There are no day schools, yet education is funded to 25.

No day centres, respite facilities.

They have been closed.

On the audacity of LA budget cuts, which allow, the same LA, or NHS, to commission £4,500/12,500 per week placements.

Venture capitalist investors, are advised, to move their money out of domiciliary care, as the future is not with the family.

The only Adult Service, is institutional state provision, whatever, laudable name it’s given.

‘Service provider centred’, ‘people centred’, but the ‘centred’, have no rights or choice.

The adult ‘learning disabled’ residential sector, has now out grown the old, and Alzheimer one.

A Care Quality Commission’s role, is now to market watch.

The Local Authorities, most likely, via secret societies, like Common Purpose UK, control the commissions.

Many providers, are subsidiaries of Companies, registered outside the UK, so there is scant financial transparency.

These faceless conglomerates, owe no duty to their vulnerable, voiceless consumers.

Only, to use them, to make as much profit as possible.

Their customers have no choice or contract.

The provision, for our most vulnerable, in need of the most ‘people centred’ care is uncompetitive, unregulated, and, in secret.

Ever greedy, accounting machinations, can close these vulnerable people’s homes, and, end their workers’ jobs, overnight.

Neither, the Local Authority Commissioners, nor the Care Quality Commission, nor NHS England, have any effective control over the services, they commission.

And, there is, a conflict of interest, between their safeguarding, and commissioning remits, as if their commissioned services, are inadequate they are liable.

That is, if there were, any effective legal accountability, or, indeed, sanction.

And sharks, can, and are, making a killing, out of our most vulnerable, as the Southern Cross Healthcare debacle, illustrated.

http://www.dailymail.co.uk/news/article-1393294/Southern-Cross-Healthcare-destroyed-Stephen-Schwarzmans-private-equity-firm-Blackstone.html

Yet courts, local authorities, and, health trusts, continue to cost cut and spend billions of our money, not fulfilling, their statutory duties.

And, we continue to let them.

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The For Profit Revolution- Brave New 1984

quote-George-Orwell-if-you-want-a-vision-of-the-431Two years ago, a Mail piece on the inhumanity of nurses in Staffordshire, prompted my following comment;

‘Careerism, academicism, demarcationism, managerialism, professionalism and finally dehumanisation– all maintained through Codes of Conduct’.

We are going through the most significant industrial revolution in history, without even knowing, let alone consenting.

Managerialism, outsourcing, commercial awareness,  and de-skilling, have converted  vocations,- carer, teacher, nurse, social worker, and, professions,- solicitor, doctor, academic, into disparate, cost effective , disposable ‘resources’ to  maximise profit, for  corporate  resource owners.

Deregulation is another word for self regulation.

And in public services  there is effectively no competition.

So, no accountability and no competition.

A recipe, for maximum extortionate profit and poor service.

Laudable verbage is bandied.

– collaboration, commercial awareness, professionalism, practitioner, dignity, codes of conduct, confidentiality, and, most of all leadership.

These  Leaders are often not elected but are everywhere.

And lead beyond authority to places we ought to be even though we do not know we should be.

This Nostradamus Newspeak perniciously shapes our society, and morals.

Replacing  substance, with control, and process.

Collaboration ensures individual compliance.

Commercial awareness allows rip off.

Professionalism, a perfunctory, impersonal, prescribed service.

Practitioner,  interchangeability of expertise/role.

Dignity’s autonomy, beneficence, non-maleficence and justice, is  reduced to, a certain standard of personal behaviour.

Codes of conduct control the individual’s behaviour, work, and communications, mask and justify bullying.

Confidentiality allows ultimate secrecy  and maintains a cell structure. Where misinformation and lies flourish. Manipulation is rife and no one has facts/truth,

Leadership allows the absolute power to dictate without question.

These ethoses underpin, our institutional,public and corporate structures.

Individualism is now heresy.

Autonomy  dead.

All  work’s substance and performance, controlled, and  reduced to zero hour cogs,  owned, by a few large, untouchable corporate outsourcers.

Atos, G4S, Capita, SENCO, are paid 4 billion a year, to act, as a recruitment agency . http://weownit.org.uk/privatisation-doesn%E2%80%99t-work/whats-problem-outsourcing-companies is now

Whilst, the actual worker, is an unemployed, poorly paid, prescribed slave. https://finolamoss.wordpress.com/2014/10/04/prescribed-care-and-communication/

All a recipe for inadequate service.

As the corporate owner monopolises the market, and, is commissioned by the government, so unaccountable.

And, the actual service is provided by itinerant, prescribed, individuals ,with no autonomy, or incentive.

But even this extortioning capitalism isn’t enough,

Now supermarkets have more automated tills, than manual.

Researchers are training robots to ‘care’ for people in enforced state care.

Robots are the ultimate resource.

Human can be dropped from Human Resources.

As an ever more controllable, disposable work force, is put in place.

Huxley wrote a letter to Orwell,  expressing his believe, that no government, would bother, with the psychological hassle of ‘stamping on the face of humanity’, and would prefer, the genetic engineering, and pleasure, of his Brave New World.

http://www.dailymail.co.uk/news/article-2111440/Aldous-Huxley-letter-George-Orwell-1984-sheds-light-different-ideas.html

Our governments, be they labour or conservative appear to be conspiring to do both.

bravenewworld

MCA ‘Incapables’, perfect pharma and research cashcows, with few safeguards

quote-the-more-we-do-to-you-the-less-you-seem-to-believe-we-are-doing-it-josef-mengele-252630

In February 2014, the Independent, revealed, a leaked report, that showed, NHS bosses, allowed, the world’s biggest drugs firms’ lobbying company, to draft a report, shaping, future health policy.

62 Tory MPs have links with private health, many with pharmaceutical companies.

With 200 parliamentarians elected, and non elected, with private interests in private health companies.

https://finolamoss.wordpress.com/2014/12/16/mental-health-big-pharma-big-profits-big-danger/

Pharma, is our third largest industry, main booster of  economy, and, the power house, of our new, privatised NHS.

And, a Transatlantic Trade and Investment Partnership,  effectively,allows private corporations, to dictate our laws, and remain unaccountable.

ttp://www.newstatesman.com/politics/2014/09/ttip-biggest-threat-democracy-youve-never-heard

We must, therefore realise that, despite, expensive altruistic PR, healthcare, is now, driven, mainly, by profit.

And, dangerous to  the public.

We are bombarded with cures, and tests, for cancer, Alzheimer’s, autism, self- harm, PMT, anxiety, depression, shyness.

The Emperor’s Clothes of preventative medicine is  the future.

‘Addiction’, is now a mental disease.

All ‘socially unacceptable’ behaviour has, potentially, a future chemical ‘cure’, and, is a future income earner.

Universities now have faculties of ‘Community Medicine’.

Autism, is a godsend, as no one knows, what it is.

Its symptoms, and, mismanagement, and push to help the ‘disabled’s mental health.

Has allowed, the diagnosis, of a plethora of different mental disorders, ADH, OCD, depression, anxiety, psychosis, self- harm.

All, in need of a, different ‘magic bullet’.

But, not only, are the MCA ‘incapable’, voiceless, permanent, forced  consumers, of any drug.

They are also, the perfect ‘subjects’, to use, if you want, favourable drug trials.

And such trials, are essential,  to create new magic bullets, to sell to GPs, and the NHS.

The statutory ‘incapable’, are both impotent, and,  encaged.

So trials, can be strictly controlled, in favour of the outcomes, the pharma industry need.

How can the incapable, communicate side effects ?

Particularly, as they are deemed, unable to retain information, and, effectively insentient.

https://finolamoss.wordpress.com/2015/05/31/the-mental-capacity-act-in-practice-emancipated-or-insentient/

The pharmaceutical company, then finance, publication of these trials, in journals, and conferences.

Incapables’ consent, to such a clinical trial, can be given by a legal representative, by The Medicines for Human Use (Clinical Trials) Regulations, 2004.

A legal representative, is a person,’ who is suitable to act as a legal representative’

So likely, to be an official solicitor, and, not a relative.

The only safeguard is, that they, must not be’ involved’, in the actual conduct of the trial.

What constitutes ‘involvement’?, and would this not cause a conflict of interests?.

Drug trials involving adults, who lack capacity in Scotland, a legal representative, is any guardian, or welfare attorney, who has power to consent, or the adult’s nearest relative.

But, in England and Wales, were the Mental Capacity Act operates, the Court of Protection, override Lasting Powers of Attorney, and  Deputyships.

And the court or, a doctor, not connected with the conduct of the trial, but, who is responsible for the medical treatment of the adult.

(an on message GP, for private state care provision, profiting from prescriptions and pharma perks), or,

‘a person nominated by the relevant healthcare provider’ (anyone), can be approached.

Not only are the incapables, invaluable, for drug trials, they are also,the perfect lab rats.

As they can legally, be used for any research, the list in the The Mental Capacity Act Rules, being non-exhaustive, social, psychological, physical, therapeutic

If an ‘appropriate body’ (normally a state funded Research Ethics Committee), agrees;

that the research is safe, relates to the ‘person’s condition’.

How could this ‘condition’ be ascertained, for autism/learning disabled?

and cannot be done as effectively using people who have mental capacity,

‘why not ?.

The research must produce a benefit to the person that outweighs any risk or burden.

How can any benefit/risk, be weighed, before the research into it is done?

And how, can these be weighed, in the subjective, ephemeral world of autistic/ learning disabled ?

Alternatively,

if  the research is to derive new scientific knowledge, it must be of minimal risk to the person, and be carried out with minimal intrusion or interference with their rights.

What is deemed ‘minimal’ ?

And, who oversees the Research Ethics Committee?

Carers, (will not be relatives, as the incapables, are all now in state care, but, those dependent upon  the state for their income ), or

nominated third parties must be consulted and agree that the person would want to join an approved research project.

How could they possibly know this, if a person is incapable, indeed, how could anyone judge this, objectively?

If the person shows any signs of resistance, or indicates in any way that he or she does not wish to take part, the person must be withdrawn from the project immediately

How could they, when any non-compliant behaviour, is deemed part of their mental incapacity and in any event, they have been deemed incapable of any objection.and  any resistance, can be avoided by medication.

.

Parents of Autistics have no rights, and are unfairly blamed, Private Corporate Parents have all rights and are unaccountable

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Britain, is a desperately depressing place, if your child is autistic or learning disabled.

As you look at your beloved son or daughter, as you cuddle, and struggle, and sacrifice, remember, your time together is short, and limited by the state.

Remember to, you cannot protect them, from that state,

And, that state affords them no protection.

LB, Connor Sparrowhawk drowned in a bath, whilst having an epileptic fit, in an NHS Assessment and Treatment Unit, costing over £7,000 per week, ( now private £13,000), 4 staff to every 5 patients.

http://www.theguardian.com/society/2014/mar/19/connor-sparrowhawk-death-nhs-care-unit-slade-house-learning-disabilities

Despite, a highly publicised, two year long campaign and hundreds of thousands of public money spent investigating, no one will, or can be held responsible.

Stephanie Bincliffe, died at 25, weighing 25 stone in her sleep of heart failure.

The known side effects of her  anti- psychotic medication, weight gain, water retention, sedation, and, heart strain, were not mentioned.

Stephanie, spent the last two, of her 7 year, at least £5,000 a week,’ treatment’, in a padded cell, without being allowed out to bathe or toilet.

No effort made, to curb her weight, reduce her medication, for the two million, paid to the private company ‘treating’ her.

Her crime?

To be born an autistic cash cow, and  at 18  attacked a stranger, we do not know her reason, in a supermarket.

Shockingly the coroner found no neglect just failure to provide a care plan to reduce her weight.

The effect of her weight and her polypharmacy of medication on her death was not investigated.

The horror was revealed in June 2017 on national BBC News

So such ‘treatment’ will continue and be hidden better, as the industry grows and PR is perfected.

https://markneary1dotcom1.wordpress.com/2014/11/25/no-neglect/

http://www.theguardian.com/society/2014/nov/24/hospital-autistic-woman-weight-gain-inquest

A similar fate, befell 20  year old Thomas Rawnsley, in an enforced under MCA, private Cambian Community Living ATU charging over £5,000 per week.

At 17, living at home Thomas was medicated, became violent, was sectioned and then forced to live in a supported living unit, where he was physically and mentally abused by his ‘carer’.

This abuse, and resultat  PTSD made him difficult to ‘care’ for, so he was medicated.

With such a high dosage, a chest infection, made it impossible for him to breath .

And his brain, starved of oxygen, stopped his heart.

His mother, cannot reveal details of his Coroners Inquest, or this LA commissioned care, as Thomas, was subject to the secret Court of Protection.

https://finolamoss.wordpress.com/2015/02/11/corruption-and-abuse-of-autistics-for-profit/

http://www.drugdangers.com/Risperdal/

Many, many more deaths unknown.

3 daily,torture, and, unbearable suffering, has, and is being hidden, simply because, it occurs, in a multimillion pound, unaccountable, allowed to charge what it likes, industry.

And, all the ‘investigations’, are by the very establishment, who commissioned, created, support and profit from this industry.

So, they will use everything in their power, to hide the truth, and, not to blame drugs  or,  state care. https://finolamoss.wordpress.com/2015/01/01/the-risperidone-scandal/

And the deaths, suffering, and, abuse will continue.

Unlike the USA, we do not have, an insurance based health and social care.

Although even in US private equity investment running disabled institutions has caused abuse see this https://newrepublic.com/article/125477/profit-abuse-homes-profoundly-disabled

But   in the UK, we have no insurance company, with a financial interest, fighting for the vulnerable.

And private actions  by parents are effectively impossible.

As parents, risk all assets even if the could find lawyers and experts.

Parents,  therefore, have  no means to ensure, profit hungry, private companies, ‘care’ for their children for life, let alone, allow them any quality of life, in now, the only adult services provision, of supported/independent living ?.

And the consumer of these services is declared legally incompetent by the very court,the Court of Protection that enforces the commissioned services of the LA.

Here, is the only  information, I could find, on the rights of parents of autistic adults from the National Autistic Society Website.

http://www.autism.org.uk/living-with-autism/at-home/caring-and-planning-for-the-future/parents-of-adults-with-autism-your-rights.aspx

it is considered inappropriate  for parents [ but not for corporate, profit making, parents] to make decisions on behalf of their children by this time in their lives’ [18, even if  they have the mental age of a young child ]

NHS and Community Care Act 1990, says:

“The individual service user and normally, with his or her agreement, [not needed, if Mental Capacity Act ‘incapable’, as most autistics illegally are] any carers [ we assume this means parents,, not paid support ?]  should be involved throughout the assessment and care management process. They should feel that the process is aimed at meeting their wishes.”

This means that care managers should consult parents when carrying out an initial assessment, and in recommending a PLACEMENT ( so your 18 year old cannot stay at home?)


but after that,  your rights as parents are not clear.

at any time, you are not happy with the services provided and feel that they are not suited to your child’s needs, you can complain either through the complaints procedure [ internal, so parents will get nowhere, and, risk all access to their child ] at your ( how are they still yours? ) child’s placement


or through the local authority [as they are commissioning agents, parents, will get no where, as the LA could then be sued], if they are funding the care

That about sums up, parents rights, and, theirs, and their child’s future.

Parents have no rights.

Nor, do the disabled service users.

So enjoy your children while you can.

Transition starts at 16.

Strangely,  NAS do not mention,  parents can obtain an Lasting Power of Attorney, allowing  them, to make decisions on behalf of their children, for the rest of their lives.

Or until the Court of Protection, overrides it.

Nor, your child’s right under the UN Article 12 Rights of the Disabled Convention, not to have all his decisions removed, because of his disability.

Or, his right to decide, where he lives, and be supported there.http://www.un.org/disabilities/default.asp?id=279

And, his right to make his own decisions, and, not to have them illegally removed under the Mental Capacity Act  , and made by profit making private residential care provides in secret. http://www.un.org/disabilities/default.asp?id=272