The Uncharitableness of Autism Charities


wolf in sheeps clothing Sometimes, you can feel no choice but to speak out about wrongs you encounter.  Sometimes, something happens which triggers you to do so.  Today was one of those days.  This is the tale of autism charitable organisations at both national and local levels.

The seed to this post was sown, when I started questioning what autism charities actually do, initially based on my own experiences but then reaffirmed by liaising with others who had  found the same, as well as reading about the experiences of others on forums.  A little bit of reading of some accounts bolstered these views still further.

A few facts about the National Autistic Society (NAS):

The NAS‘ income includes Government funding and also public donations.

71% of it’s  funding goes on staff costs, leaving only 29% for everything else – including actual support for autistics.  This staff, includes staff for it’s schools and admin staff. NAS schools support only 500 autistic children across the UK.  The UK has a population of around 150,000 autistic children.  So…tokenism?  Smoke and mirrors?  A very conservative estimate of how many autistic adults there are in the UK, is based on 1%, 641K – but I have seen the figure quoted as 700K and research shows that for every 3 diagnosed people there are at least 2-3 undiagnosed (and it also cites the rate as 1 in 64).

I once asked some questions about their accounts on the NAS’ Facebook page, I was instructed to message them privately – as if they were scared to let the cat out of the bag and then they blocked me from commenting at all, no reason given.  All I had done was quote some figures from their accounts and make associated points. (you can read their accounts here.)

The NAS runs campaigns, does surveys from which they produce reports, has lots of information about autism on it’s website and runs conferences and training courses.  Of course conferences and training courses are at a charge to delegates and attendees, to at least cover their overheads in running them.  They also have some regional coffee mornings etc. and people can apply to be NAS ambassadors to run things under the NAS flag.

But what physical difference do most autistics feel from such an organisation?  How does it translate on the ground, in day-to-day life?  The NAS has a helpline, when I once called it prior to my youngest child’s diagnosis (whilst on the waiting list to be seen), I was told “We can’t help you without a diagnosis.” and that was that.  I was stunned, as well as left high and dry.  On other occasions having used their email helpline, I discovered that they could not take any action to assist in any form and they sent generic information and links, all of which I had already tried the avenues for, before reaching out to them for help.  And some of their replies took about 4 months to arrive.

The NAS has also failed to speak out about the issue of parents in autism families being falsely accused by professionals, with those accusations sometimes even resulting in children being taken from their families.  They are fully aware of it, they even ran safeguarding workshops to see what angles professionals were dealing with autism families from.  An email conversation and long telephone conversation with a relevant member of NAS staff is also how I know how very aware they are of this problem.  But they have not spoken out publicly whatsoever.  They took the softly-softly approach with the safeguarding workshops, I attended one.  They did not challenge a horrific CAFCASS professional there, who had the most shocking ‘parents are the enemy‘ attitudes towards the family in the role-play.  The most they have stretched to, is giving one such falsely accused parent speaker, Tim Gilling (who also happens to be Deputy Chief Executive and Director of Health and Social Care at The Centre for Public Scrutiny), a platform at a January 2015 safeguarding NAS conference “Getting it Wrong: The Impact on Families”  (Most parents however will never have such a platform and no recourse or help, when they find themselves falsely accused, and most professionals will carry on regardless).

Where was the NAS when Monique Blakemore of Autism Women Matter went to the United Kingdom Human Rights Committee “Human Rights Violations Against Parents That are Autistic, Have an Autism Spectrum Condition“?  Why didn’t they publicise the call for research participants for the important survey on autistic motherhood on their website?

I have previously contacted the NAS’ campaigns department over important issues that need raising by them, they are after all the UK’s main autism charity and so have the largest voice and it could be argued, the largest responsibility.  They didn’t respond on any occasion.  I also had cause to contact their legal department over an issue involving an authority’s breach of various laws in regards to autism, three emails and a year later, they never responded there either.  Not a bean.

I additionally contacted them asking for their assistance in organising a fashion show to highlight the issues of females with autism being under-diagnosed.  They were initially enthusiastic – when they thought I wanted to do it all myself and they would just put their name to it as a ‘supporter’.  Why not after all, free publicity which makes them look good.  But once I clarified that I wanted them to fund it and help source a venue etc. they told me their funds were all already spoken for and they couldn’t help.  Really?  What are ticket sales for then if not to cover costs?  And surely a charity’s funding is there to highlight issues for the people it represents anyway.

The NAS cannot police the Autism Act 2009 or the Autism Strategy 2010 (and nobody else is either).  They never highlight that the Government is not policing it either, at best only pointing out how local authorities are faring on implementation of provision across the UK.  Don’t bite the hand that feeds you eh?

A recent post on their Facebook page was met with a string of comments of people speaking out about how neither they nor their children saw any benefit from the NAS and asking what their funding was being spent on.  Some of these people send monetary contributions to the NAS and pay to be members.  As I used to, but found the quarterly magazine didn’t confer any practical help in everyday life and membership didn’t benefit me in any way.

No Better the Devil You Know…

dancing with the devil

But it’s not just the NAS.  I have encountered a dismally woeful and shocking provision from a local Asperger’s charity which has also shown me how these organisations fail the  very people they are set up to support.

This charity, among other things, assists autistic people with benefits such as DLA by liaising directly with the DWP on their behalf (phone calls and letter writing can be difficult for autistics, especially dealing with layers of departments to get through and staff who don’t explain things clearly).  I gave them authority to do this for me, by signing their requisite letter and was assigned a caseworker, who I met.  Twice.  Other autistics will understand what I mean when I say, that being required to attend meetings is often very stressful, meeting new people is very stressful.  Communication itself, is at times stressful.  It’s a condition with social communication problems, so doesn’t it go without saying?  Other parents of autistic children will also understand when I say, that supporting an autistic child requires a lot of work, assessments, meetings, reports, forms, frequent school liaison, EHCPs, DLA, tribunals …ad infinitum.  When you have two autistic children as I have, you can double the stress, exhaustion and time involved.  When you also have autism yourself…well, you get the picture.

So when this caseworker (who had a pattern of being very tardy – and sometimes non-existent – in responding to status update request emails, involving lots of waiting and chasing) went on maternity leave without a word to me, or what was happening with my case (and apparently not handing it over to anyone either), leaving matters (it transpired) unresolved and with much time having wasted, needless to say this was difficult for me.  In chasing up and finding out there was a new caseworker, he was insisting on me going to meet him at their offices, it was even more difficult.  Especially as they knew I had a school-refusing child on my hands and it involved a train journey to-and-from a not well-served station and multiple other regular commitments to contend with – plus having Ehlers Danlos Syndrome, I am frequently physically exhausted.  Finding out that his manager backed him up on this demand, despite that I had previously met his predecessor and they had all my personal papers and details and therefore knew exactly who I was.  I reminded them that I was entitled to reasonable adjustments and that it was very difficult for me to comply with their request, but they wouldn’t budge, so reaching stress overload with it, I ended up cancelling use of their  service – even though it meant me taking on a challenging matter alone, the like of which they were set up and funded to help people with in the first place.

Fast forward to today, they sent me some of my DLA post they had received, reminding me indignantly (replete with exclamation mark and the envelope only having reached me by great luck, the charity caseworker having totally missed out the whole first line of my address resulting in an associated Royal Mail sticker on the envelope, telling me to inform the sender and with RM having worked out where to send it) that I should have notified DWP of the change in arrangements.  At no time when they ceased providing me their service, had they told me I needed to do this.  As it was them who instigated the arrangement with my signature of authority, I assumed they would have taken whatever action was required to reverse this.  Us autistics tend to take things at face value, we are not good at predicting or knowing peoples’ intentions.  And I kinda had a whole host of other things I had to deal with taking my attention too.  So, with my PC freezing, making emailing impossible at the time and feeling this needed imminently dealing with (indignant exclamation marks can make you feel that way), I had to ‘bite the bullet’ and phone this charity.

Just phoning them dredged up the emotion and stress they had caused me previously by refusing to meet my reasonable needs  and putting barriers in the way to assisting me, so when I asked for the manager (didn’t trust the caseworker with his exclamation marks and inability to even address the envelope correctly) I expected it to be simple to resolve.  How wrong I was.  For the duration of this call, I was made to feel I was in the wrong and that they had tried to be so flexible.  Autistics can find using the phone very hard, I am one of them.  It’s hard knowing when it’s your turn to speak and often you misjudge and can blurt out your points – often at moments you are intending to be helpful, but also the act of communicating over the phone is fraught with uncertainty.  So when this manager started to say something and I uttered a short contributory sentence related to what she was saying, she tersely told me “Can you let me finish!”  How silly of me to expect an autism charity to be autism-aware.  It was like being a naughty schoolchild being told off.

I explained how stressful it was having this situation arise, especially after them having caused all these delays in the first place and having refused to proceed without putting me through another stress-inducing meeting.  She couldn’t see it – and she wouldn’t have it.  She told me they had tried to be flexible by offering to come to my home.  But I am not alone among autistics in hating having people come into my home, especially strangers.  And by the point this had been suggested, they had already ramped up my stress by being obstructive and causing me to worry about the whole DWP issue still being unresolved, due to the previous caseworker not dealing with it during all that time, that this was no good either.  It wasn’t even a policy requirement – this was their personal preference!  I again questioned why they needed to meet me again at all.  The manager staunchly defended the caseworker’s insistence on a meeting, saying she too “…would feel uncomfortable assisting someone they had never met, with something”.  I asked how it was right, that an autism charity would put their own personal feelings above the very people they were set up to support.  She had no answer for that.  Stony silence.  I pointed out that even if it was a policy, I would be entitled to reasonable adjustments in having things done differently, according to the Equality Act 2010 and was told that they knew all about the Equality Act as they advised other organisations on it!  I was given buckets-full of excuses as to the reasons previous handling of my case was so delayed – including part-time staff, people going off sick etc. – despite these supposed pressures, they still had the time to insist on superfluous meetings based on their own personal preferences (do busy people with a lack of resources have time for such things!).

The emotion of having to deal with this whole scenario had made me upset.  My voice was wobbling.  You could hear I was upset, though I definitely wasn’t shouting.  But instead of offering sympathy and empathy, this manager told me accusingly “you’re raising your voice!”.  I truly wasn’t, I had not been rude or offensive in any way and it was clear this was upset and not anger.  Aside from the fact that voice prosody in autism is often affected as part of the condition and we can speak too loud without meaning to or knowing we are doing so anyway, so she should not have made such an accusation even if I had seemed to be raising my voice.  But she wanted to belittle me and accuse me, and had no understanding of autism.  She wanted to defend their indefensible actions.  I was blameworthy.  She even said to me “well sorry you feel that you’ve not had a good service” (this response is intended to imply it’s untrue, and you are blamed for having that wrongful view, or are being unreasonable – it’s almost legalese to deny liability).  This autism charity, funded by the local authority and barely hanging onto their funding as it is, was discriminating against me – the very person they are supposed to help.  Isn’t charity work about being caring and compassionate?  Isn’t it about having full understanding of the very people you support and meeting their needs?  Isn’t it about providing a service that is accessible and behaving responsibly?  Don’t they have a duty to use their hard-won resources correctly?

And when you point out the effects of what they have done wrong, to still not accept it and try to right the wrong, just makes it cruel.  Quite ironic that their website claims part of their service is to improve wellbeing!

And before I end this post, the ridiculousness of it is, I just had an email from said manager, telling me that the caseworker had only set up the arrangement to receive my post (what would be the point of that!)not to liaise on my behalf with DWP as she had told me she was doing!  So for all those months (at least a year) they were a glorified post office for me and any DLA issues that needed dealing with, I was totally unaware of.  Having handed me back a pile of correspondence that I now cannot face.  At least when I had to deal with it myself I knew where I was and what was outstanding.  And after all that, I am left with having to also now contact DWP to sort out redirecting my DLA letters, as this charity won’t reverse the arrangement they set up for me in the first place!  Who knows with all the other stuff I have to contend with, if or when I will be able to sort this out.

I can’t bear incompetence.  We all make mistakes, we are all human.  But to not have any pride in your work or thought for others in doing a good job and getting it right, especially in charitable work, to treat people with such disrespect and contempt is a gross failing.

Shame on them.  But this issue brings it home, that charities exist, flying their own flags bragging about what they do, with their staff no doubt patting themselves on their backs for their philanthropic endeavours (“Me?  Yes, I do charitable work luvvie.”), but it’s largely lip service.  The true measure of whether a charity is doing the right thing, is if as many people as possible benefit from the service, if they meet their service user’s needs, if they bother to learn about the condition they supposedly support and if they spend their money to benefit the people they serve.  Hence the wolf in sheep’s clothing – the outside is an admirable cause, but the inside is all about the money, self-serving, self-glorification and self-aggrandisement.  So I say to these charities:

charity justice quoteYour Job

25 thoughts on “The Uncharitableness of Autism Charities

  1. My daughter had the same problem when ringing for advice. Extremely unhelpful when you feel so out of your depth coping with the situation and all that it entails. Thanks for the info on running costs one charity that won’t be getting our support.

    1. I’m so sorry your daughter had such trouble Jill. It’s really so very hard, because people look at a ‘high-functioning’ autistic person and see they are of normal intelligence and look the same as everyone else and therefore have such high expectations. But the brain is wired a certain way and cannot do everything the same as neurotypical people can. But they just don’t see it. It really is an invisible disability and it’s just so saddening the judgemental attitudes and contempt some people have, when you don’t match up to their expectations. The NAS to all intents and purposes seems to be a sham. Parents desperately seeking help for their children and autistic adults alike, are being failed.

  2. I am really sorry you have both found things so difficult. I also wonder if it is worth engaging with the NAS in any way – however I think that although they do not truely represent autistic people (which is seems is what they represent themselves as doing, and are thought by the public to do) they do some good political and awareness raising work. I think they basically over promise massively and underdeliver because they are run like a business but are supposedly a charity.
    BTW I don’t think your assessment is quite fair in that you quote a figure for staff costs and then treat this as excluding help they give autistic people, some of those staff will be actually assisting some autistic people.

    1. Thanks for your reply Caroline. The point about the figures is that the people they support is a drop in the ocean. So all the funding they get is not giving help on the ground for most autistic people. Hence I suggested tokenism.

  3. With all due respect, I am afraid, this is merely rearranging, the deckchairs on the Titanic.

    NAS, are guilty of far worse.

    You are right, as a paid up member, of both National and Local NAS, for 10 years, I know only too well, they serve no purpose, except their own.

    I have obtained nothing more, than an occasional glossy magazine, selling themselves, and their products, and an information pack giving vague, available on the internet, information .

    And, boy have I tried to get help, through phone calls, local NAS meetings, blogsites.
    But far more damaging, is the role NAS, has played in the autistics, and their families, now dire position.

    Being, mainly government funded, directly, or indirectly, by the huge incomes their schools, or independent away from home supported living brings in.

    They have backed, and gained substantially, from the government, and LA policies, and the MCA, which all conspire to remove the autistic’s autonomy, and, render them, the ultimate cash and pharma cows.

    And, remove parents rights to their own children, or, any say in their education, or treatment.

    NAS have helped to create an autistic empire, creating s its own consumers, by using their charitable money on campaigns to promote awareness, and diagnosis.

    But not help or support.

    Now autism is the UK’s most costly condition, and therefore, a goldmine.

    But the only help, support, treatment is removal to drugged encagement for life or indefinite treatment centres.
    Every day, we see a new horror story of the abuse, and even death in such places.

    Yet, the ‘autistic’ educated in private schools, can avoid the label, and have successful lives.

    So, what are the advantages are there in a diagnosis?

    None, that I can see
    If you are forced into state education, SEN, now ECHs, the autistic, are being educationally written off, and labelled, as having learning disability/intellectual impairment, rather, than difficulty, regardless of IQ, which is then later based on adaptive test, not cognitive to render them incapable under the MCA.
    ECHS now also mean,the autistic and his family’s life from 5 , or if diagnosed later, are controlled by a social worker.

    In any event an autistic child, was already, a ‘child in need’, simply because of his disability.

    If a parent, or child is autistic, this can, and is being regularly, used by LA Care Proceeding to remove, and or control that child’s education, and medication, and silence complaints.

    At 18, most autistics are now illegally assessed as ‘incapable’, of ever being able, to have the capacity to make any decision, past or present, or, even have a relationship with their parents.

    Their parents, cannot make decisions for them, even if they have a power of attorney, as the autistic is deemed ‘incapable’ of signing one.

    So, regardless of IQ, now wrongly based on adaptive, not cognitive skills, the autistic, is now rendered, and treated for life as if’ insentient’.

    All his autonomy removed, for profitable ‘care’.

    You can avoid all this, by paying for a private school, and avoiding a diagnosis.

    In the Autism Act the autistic and their parents, were sold a pup.

    As the Act merely imposed guidelines on Las for treatment/care/support, and therefore can be and areare being ignored, and cannot be enforced.

    Except by judicial review, which is not legally aided, families risk hundreds of thousands costs award, if they lose, which is likely, because of the nature of JR and the fact they are taking on state policy.

    But, the Autism Act, greatly aided the profit, that could be made, by the supported living institutions, most autistic are now forced to live in at 18, without escape for life, and, forcefully medicated for efficient care.

    The label autistic, and the worse the behaviour is made, enables the care providers, to claim the maximum amount, on average £4000 per week, from money, that should be available under the Chronically Sick and Disabled Act 1970 , to the disabled, and their families.

    But, they are allowed, to provide basic, zero hour care, as the Autism Act cannot be enforced, so the profit margin is huge, and that is why supported living is being bought up by venture capitalists.

    So, the NAS billions, over the years, has been used to betray, those they are charged to support, and break the hearts of their families.

    1. Thanks for your comment finnolamoss, we’ve spoken online before and I know how strongly you feel about this. There is no doubt, what you describe happens to some people. But it is a sweeping generalisation to imply it’s the fate for all autistics because they received a diagnosis. Some of it – but not all, may also happen to others.

      It’s important that we don’t generalise, or catastrophise to the point of hyperbole if we are to get people to take the problems that are present, seriously.

      The MCA, is in danger of being used when an autistic (or indeed those with mental health problems) is deemed a danger to themselves or others, no matter their IQ. If they are learning disabled, the state can and often will intervene if they deem the parent/carer not acting in their best interests. The problem with that, is that it is ripe for abuse and things can be fitted to that accusation at will. The umbrella of safeguarding trumps everything else and professionals have a get-out-of-jail free card for any wrongdoing because they are purportedly safeguarding that person. Parents are relegated to the sidelines, without consideration for them being an expert in their own child/adult child and understanding their needs and difficulties far more than any professional working in a generalised sense.

      There is definitely an issue with the law seeing autistics that have capacity to make their own decisions as adults with the right to exlude their parents, even where their understanding is impaired due to ToM, social difficulties, lack of understanding of implications of things. An autistic can often cognitively work out and explain something which makes it appear to professionals they are competent but they can have great difficulty in applying that concept to themselves in real life. This is not taken into account. I therefore dispute what you say about most autistics being assessed as incapable. Many parents find the opposite. You might want to read this:

      I would disagree that education in private schools is a solution to the ills that are present in the system. Private schools usually have no autism expertise and I personally know of a family with an undiagnosed autistic who is in the private school system and cannot cope. Most parents cannot afford private education and the LA won’t be paying for it either!

      I also disagree that avoiding diagnosis is the answer. It is in fact, usually very difficult for all but very obviously autistic people to get diagnosed in the UK. They are withholding diagnoses to avoid providing that costly support. The NAS is also aware of the agenda not to diagnose (“In the UK we are aware of situations where clinical professionals have felt under pressure from their employers to under-assess needs in order to ration limited resources.” Children without diagnoses struggle in education immensely and that will continue in post-education life experience. As I have said before, without legal recognition of diagnoses you have no protected characteristics to request reasonable adjustments where you need them.

      Both my children have EHCPs and they most definitely haven’t been written off as you describe. It’s also untrue that having an EHCP means social care are involved, I know that from personal experience. You are making assumptions that are not true, which I have pointed out before also.

      Legal aid can I believe, still be got in the name of the child. There are also great organisation out there such as IPSEA to assist families.

      Regarding lasting power of attorney, I’ve had it from a legal person “an LPA may not be appropriate if a young person’s mental capacity is not high enough to make an LPA. The alternative for someone who lacks mental capacity is for family or friends to apply to the Court of Protection.” so you are misleading people by your comment. I think the problem is that people don’t find out their rights in this regard and then it’s too late once the state has stepped in and taken over, drumming up whatever they feel like so they can control what is spent on the person.

      The MCA, from something I read recently, for “high-functioning” autistics can only be brought to bear to deny someone liberty if they are considered a danger to themselves or another person. But that is the case for people with mental ill-health too. The sad thing is, rather than understanding and treating or making adjustments for the triggers for the autistic person’s distress which manifests as challenging behaviour, the first option seems to be drugs and lock them up. This is the 21st century and you wouldn’t know it.

  4. I am afraid, you are wrong on the law relating to the MCA,

    What you describe, ie’ a danger to themselves or others’, is the criteria, needed to section under the MHA, which again, is generally inappropriate, for an autistic, and, has given rise now to thousands of them, being indeterminably, held in private and public NHS hospitals and treatment centres .

    The power, given to the state, via the LA under the MCA, to remove and control an autistic,is far more extensive than that, and is for life.

    S48 is being regularly used by the LAs to control the family life of the autistic, and remove them, from their family home, against theirs and their families wishes, to 24/7 supported living, where the autistics have no choice, and families are allowed supervised visits, and have no say in the medication, or care, of their children,

    Although this is an interim order, it can be used to remove an autistic immediately, pending a final hearing, and it can be obtained, from the high court, and is being, without notice given to the parents, who do not attend, or have the right to give evidence, and they then get less than 24 hours notice of the county court hearing where the matter is dealt with,

    All that needs be shown in practice, is for a s48 order, is that the LA, suspect, that a person is ‘incapable’, and the practise is now to assume this, purely on the basis, that a person is autistic per se.

    Parents are not allowed to represent their children, but an Offficial Solicitor is appointed who generally merely duplicates the work of the LA.

    Once a capacity assessment has been obtained by order on the autistic, and they are deemed incapable, they are given no choice, the test is illegal per se as general, and in any event has little relationship or meaning to the autistic mind.

    Once they are declared incapable, then the state decide what is in the incapable’s ‘best interests’ for life, and that is usually to remove to supported living, and enforce a care plan into which neither the incapable nor their parents have any right to input into.

    This process is bypassed often were autistic attend a special school were at 18 it is assumed they are incapable and on transition 16-18 they are moved automatically to supported living I know this happens now in NAS schools as NAS have built their own supported living Units.

    We need FOIA Notices to reveal the number of autistics living forcefully away from parents at 18 and above..

    1. If you have any direct quotes/links about the MCA I’d be happy to read them. But this may be more about devious LA misinterpretation of the MCA rather than it’s actual wording/intended meaning.

      1. The MCA, is being implemented illegally, as appears from the latest MCA action day only this month.

        And, from this, it appears that little will be, or apparently can be, done about the complaints about the illegal implementation of the Act, mentioned in the House of Lords Select Committee Report two years ago.

        The Act per se, is badly drafted, as it allows too much executive discretion, in breach of the rule of law, particularly the capacity assessment, which in any event, is in breach of the UN Convention on the rights of the disabled, and the Human Rights Act, as it removes all their legal rights.

        Rarely, if ever, is s1 being applied to ensure all is done to maximise a person’s capacity, before an assessment.

        But the biggest illegality, is the use by court order of general/ blanket capacity assessments, whenever the LA apply for them, as the act provides an assessment can only be undertaken, in respect to a particular/specific decision, , when it needs to be made without delay in a person’s best interests.

        The effect of all this is, that in practice the Court of Protection uses the Act to declare as many people as possible incapable, remove their rights. and place them in care provisions for life, making every choice for them, under a care plan, in supposedly what the care provider deems, is in that persons best interests under the MCA..

      2. Thanks for the links, will check it out when I can make time! Are you actively campaigning and petitioning the Government over your concerns?

        Have you input into the Westminster forum? This would be a great place to air your concerns: closing date for submissions regarding healthcare for autistics is 5th May and there is a proforma on that link with questions that can be answered. Word limit for replies 2,000 in total.

  5. In view of the contents of my links, I doubt a post in these forums by finola moss, will do any good.

    I have already written personally to Norman Lamb, re my daughter, when he was Minister Of Health see my blog, and again put details in under the hear my voice campaign.

    I also doubt that I have locus standi.

    They know, what they are doing, they do not need me to tell them, this sadly is probably yet another a diversionary tactic, when action is very much needed.

    As this illegality has now been going on for nearly 10 years, that is a lot of people, whose rights should not have been removed.

  6. It’s not a forum as per an online members forum where people post. Here it describes what it is:

    It’s very important that you contribute. Without people inputting and speaking out, nothing will be recorded. Once is not enough. Individual ministers cannot alone make a difference. They need pressure and the public continually contacting them and highlighting the issues. It may well be deliberate, but that is why pressure is needed.

    Why would you not have locus standi? The facts are supposed to speak for themselves. If you are confident enough to post around the internet in blogs and comments of what you believe, then you have to be confident enough to make a stand about it. Inaction will mean the status quo remains. If your daughter has been mistreated then you are her voice. All the voices of others in a similar position to your family can join forces as one voice.

    Enough voices and it becomes mainstream media and that will bring to bear the pressure needed.

    1. It is more than once, read my comment, and it was put again personally to Lamb by Leo.

      We had the LB campaign which I posted on regularly.

      What as we have seen is the point of pressure , when no one wants to listen, or more importantly change the present abusive, cash cow system?.

      Media gagged see posts on Thomas Rawnsley All is a one way cabal which know exactly what they are doing and what is going on.

      I have also complained etc in my own case at all levels.

      The form you link, I misunderstood to relate to MCA, but relates to autism care.

      As our own social worker stated, LAs do not pay for specialist care, but they do charge for it, by assessing what is paid to private residential provision, but not family care providers, on the severity of the condition.

      This itself, is a recipe for abuse, as the worse the autistic is made, the more they can claim and drug.

      Even, if they train supposed autism specialists, what is this training worth ? who checks it is adequate? and how can it substitute for a parent, who has known the individual autistic all their life, as all those deemed autistic are very much individuals with their own above all personality.

    1. The Court of Protection usually orders that families cannot get in touch with media, or put anything on SOCIAL MEDIA, about their situation, or services.

      That is why, I believe Thomas Rawnsley’s mother, does not mention anything about what is happening about her son’s death.

      It is also probably why all petitions/campaigns, relate to matters under the MHA, rather than under the MCA.

  7. Well the Court of Protection is now open to media: (albeit I think they have to apply and pay a fee).

    Someone did start a petition about the CoP: so there may be others.

    It was reported last June, that the court of appeal says people should have involvement (including autistics) in legal proceedings about their liberty:

    1. Yes, but this does not stop COP judges, putting gagging orders on parents . Breach of such order, is contempt.

      Few media attend COURT hearings, particularly in local COP, where orders made.

      We see little in media about all the DOLs and why ordered.

      The ‘incapable’ are represented by an Official Solicitor, in the COP, who is chosen, and paid for by the state, and usually follows/ duplicates the work of the LA

    1. Just scanned all these and the percentage of success appears very low say 10% ?

      And what questions, would you suggest number of s48 applications ? What would that tell us ? better number of DOLs, but then would these be to remove forcefully from family ? Or just as needed by Cheshire case ?

      And, most cases, in any event are dealt with without a final hearing by consent. How are these recorded ?

  8. I haven’t had any personal involvement with CoP so I am unable to comment. But you might consider questions like number of MCA applications that were disputed by relatives/carers, asking about the recording itself (what is recorded in what situations). Also you could ask about gagging orders and imprisonment of those breaching them.

    All I can tell you is that to fight, you need information. Knowledge is power. Obtain everything you can under FOIA’s and start from there.

    1. We can but hope then, that this information, can be obtained, and is favourably received..

      Best wishes, and thank you for your all your links,

  9. The NAS is a despicable organisation. For the diagnosis to cost £3,000 for a four-five hour assessment from a non-medical psychologist is a disgust. Deduct room costs and they’re taking home £150,000 pa.

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