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The High Ground, Norfolk & Sophie’s Genius

June 4, 2016

What a thoroughly shit week.

I’m still trying to deal with the fall out from the “Mencap Interview”. I still don’t really understand the feelings that it has aroused in people. Yesterday, someone tweeted, rather vindictively: “There are two ways of campaigning. The right way and the Justice for LB way”. The same person was equally dismissive of 7 Days of Action. I don’t understand what prompts that degree of venom. I almost admire that double whammy of a tactic of being extremely wounded and hurt whilst adopting the moral high ground at the same time. It’s phenomenal because its got all bases covered.

Then since Wednesday, I’ve been trying to deal with Steven’s annual pre-holiday anxiety. Several meltdowns that social stories, picture charts don’t even touch. I’m actually hoarse from the number of times I’ve had to reassure and answer the following questions:

“Dad – put batteries in the CD player for singing on the minbus”.

“Dad – put swimming trunks in the big suitcase”.

“Dad – get blue Pringles from Ranjit’s sweet shop & put them in the bag”.

“Dad – put Mr Bean in America in Steven Neary’s backpack”.

On a loop. Several times an hour. And it will all evaporate once we get into the minibus on Monday morning.

And then after a week long diet of shit sandwiches, yesterday along came Sophie Dimitriadis to make everything alright with the world again. Sophie contacted the 7 Days of Action posse a few weeks back and asked to make a film about the dudes featured in the campaign and to explore the wider issue of life in an ATU. She has worked like a trooper over the past month putting the final film together but it was well worth it (in my opinion).

Two lines in particular leap out to me that illustrates her genius and gets to the core of what the ATU scandal is all about.

Firstly, Sophie interviewed Norman Lamb, who came out with the killer summary, “Somehow the State manages to resist the attraction of providing better care at a cheaper cost”.

Spot on Mr Lamb. Baffling. The solution, so near and yet so far.

Then came the interview with Deb Evans, the mother of Eden who featured on Day One of 7 Days of Action. Deb is reflecting on what life might be like when Eden comes home after seven years away: “It would be nice if he popped round for a cup of tea. That would make Eden very happy”.

And Deb smiled. A smile at the simplicity and normality of a cup of tea with her son.

Here is the film. Pour yourself a Double Diamond, perhaps prepare a small cake on a side plate. Definitely have some tissues handy.

Thank you Sophie and your brilliant team.


From → Social Care

  1. Trudy permalink

    No comment.
    Tears and anger.

  2. The ‘Stuck in the System’ video, says 3,000, are waiting to come home. But it is nearer, half a million.

    As few, and, increasingly fewer, autistic/LD, have been allowed to stay, or, return home in the past 5 years..

    And, are being forced at 18, to live in ‘supported’, independent ,24/7 surveillance, without choice living.

    And, sadly,that will remain the position, whilst, they remain cash cows.

    Norman Lamb’s campaign, moves the 3000, from one institution, an ATU, where they should never have been, let alone been kept for so long, to another; ‘home setting’ institution, nearer their family.

    Thomas Rawnsley, died in just such a home setting, and, was previously abused in another, which was near his family.

    These 3000, as, with all LD/autistic, in their home setting,will be controlled by the state, via the Court of Protection under the MCA for life.

    And gagged, so, would risk contempt, if they appeared in a film, and ,neither they, nor their family, will have any rights, as to what they do, or, the services they receive.
    Mr Lamb states,
    “Somehow the State manages to resist the attraction of providing better care at a cheaper cost”.

    At £3,500, minimum per week, paid to Lifeways, and Homeleigh, now both owned by Cambian, for Thomas Rawnsley’s abuse, and death, this, is, on average only £500 cheaper, than the average ATU cost.

    These, ‘home settings’, are run, on, an ever more profitable basis, being increasingly venture capital backed, and monopolised.

    The worse behaviour./complex needs becomes, the more, they are allowed to charge. So the care is not outcomes based

    And, is it really that much better, except for proximity to family better than in an ATU or Winterbourne ? It certainly wasn’t for Thomas.

    All the LD/autistic, and their parents want, is for them to be at home, not, in an expensive euphemism for home.

    If they were, it would cost the state relatively nothing, just a little respite, and support .

    But ,even after a Carers Assessment, a maximum of £500 paid per annum, and £103 DLA and £62 Carers Allowance, and no day centres or respite facilities.

    Why ? Because, our economy, and venture capitalists investment portfolios, can be boosted by this controlled residential provision, which is very lucrative, at the expense of our children, and public money.

    • But it is possible, as mentioned in the film, for people with LD/Autism to live in their own home in their own community fully supported to lead a life of their choice for an average of £112,000 pa.

      • How ?

        This money, will only be made available, for state/private provider controlled away from family living.

        Autistic/LD, are being declared ‘incapable’ under the MCA by the COP of making any decision, and then removed from their parents, even if, they want to stay at home, to residential care for life, in their ‘best interests’ under the MCA by COP.

        They nor their parents are given a choice , All legislation ie Carers Act , MCA only allows for this, and all LA./HSCT funding supports this, as do all agencies.

  3. Absolutely worth it! When will the film be aired on TV?

    • Not sure. The producer is trying to get the main channels interested.

      • Panorama should be interested, it would be an eye opening follow up to Winterbourne View and show up the inertia within our system to correct this scandalous situation and allow people with LD/Autism to have a life as would be expected by any other member of society.

  4. I was offered the money when a provider couldn’t be found, and it was suggested by Social Care that I find the staff, and that would have been ideal, except that I had a month to set it up, because of a notice period.
    There is shared (shared with a housing association) ownership of a house which is difficult but possible, and some families can run Supported Living set ups.
    However, I would have care through an agency to ensure workers are in good supply.
    I would want to be offered direct payments, have a register of care workers, skilled and experienced, who are able to be trained by me, to know the person at the centre of everything, the person that is normally neglected.

    We can’t just say that families don’t have the opportunity, because there are families who do.
    I was told that families can get a personal budget for their loved one, and have some control over the money, how it is spent – which is person-centred.

    I’m not saying that I’d find it easy, but some control is better than no control, as life would be more person-centred.

    • But this is not the reality of what is happening.

      I say no control, because that is what is happening.

      LA/AUTISTIC are being declared incapable of making any decision so can have no control, and their parents at 18 lose any rights over what happens to them.

      The policy of LA/ HSCTs, is only independent living, why do you think they are building units, all over the country and NAS and MENCAP, have built them.

      Adult services at most will fund a day centre, if you can find one, and deduct most of the DLA benefit,

      They are not providing support through direct payments in ADult services, if you sue them under their duty to provide support, they will be held to have fulfilled this duty, by their provision of away from home supported living.

      Court proceedings, can be brought for removal in best interests, particularly in view of lack of support at home.

      • Finola – you’re doing one of your sweeping statements. Steven’s situation is exactly as FF2016 describes. As you know, I can’t stand the extra work but it enables Steven to live in his own home, on roughly the same figures as was quoted in the film.

    • Why would an 18 year old, very vulnerable person, need his own house through a shared housing association scheme, if he has a perfectly good one, that he wants to stay in with his parents, and they with him.

      The average age now of children leaving home IN uk,has now gone up to 26, and that is their chose and they are not autistic/LD,

      Why are LD/autistic, so discriminated against in this respect, particularly, as this option, is much cheaper and available

      • I agree, and more support should be given to enable the person to stay in their home and any therap/treatment required should be available to them within their home in the majority of cases. As we know, reaching puberty is a ‘flash point’ for people with LD/Autism and requires more understanding not torture! However. Parents don’t live forever so it is necessary that at some stage our sons/daughters will need to learn to become independent of us, preferably while we are still around to support this transition. Any change, especially sudden ones cause major agitation and stress and should be avoided. It is also true, as you say, that the type of housing offered to LD/Autistic people is often no better than being stuck in an ATU! But it is possible to apply through ‘Homelink’ for a council/housing association home with a lifetime tenancy where you live. Also you will be given a favourable chance of being allocated a home if you have a local connection. This is the route our son took with our support. He has his own two bedroom house in the village he grew up in close to us and other family members and friends with his dog! He needs 24hr support. It has not been easy to achieve his (exactly what is promoted in the Care Act/Autism Act!) position. But after three and a half years of complaints procedures and help from the LGO he will receive the support he requires. It is not easy but we just have to keep insisting for what is right and refusing what is wrong. The Acts are Law and we want what they state!!

  5. Yes, staying in the family home is ideal, safer and normal, but what being in the system has done to my son I can’t detail in this blog, but I fought for him day and night.
    I realise now, that the only (or most) therapy there was, was going to come from family. As it still does. His best input is from me. No OT ever suggested a fun activity even. I’ve had to do everything.

    For 20 years, he was happy at home, and I never imagined him not being here and it was supposed to be his home after we died – still will be his and his sibling’s.
    I had direct payments of about 4 hours a week from 2002 to 2011, to use until he was 20, on top of his DLA and my CA, and I employed university students to help out in holidays, and they were real friends or even like family towards him, going with us to theme parks, playing games at home, doing puzzles, reading books, and going out, doing everything I asked – not like most care workers now, who I try to build bonds with them – but care providers so far have been mostly about money.
    I was last year offered 24/7 direct payments, tried to find a house, but the care provider caused us harm, too difficult to write about. Have had no time to grieve.

    A house nearby, even adjoined to us, big enough for support workers to give him privacy, with us leading his care, is to work for.
    Shared ownership would mean he isn’t a tenant, we could choose the house in a nice quiet area like his family home, it wouldn’t belong to a care provider, and it would be a familiar sensory place, for us all to come and go as he wants.
    Or lifetime tenancy is okay.
    We had a good community nurse and social worker which changed when they left nearly 2 years ago, still have a good psychiatrist, but now I’m starting again in a new traumatic situation. The only sameness I see is a good family’s commitment.

    • That is the problem, control, and future control over our loved one’s care.

      Under the present law, we have no control over it, as parents have no rights, and nor do the vulnerable.

      Thanks to the MCA.

      The Autism Act, is effectively useless, as it was drafted as guidelines only for the LAs, not statutory duties, so needs expensive, very difficult to get, individual JR applications on a LA care decision.

      The Carers Act, gives no right to support, only to an assessment for such support.

      This means, our very vulnerable children, as adults, are now care package opportunities, care which families have no right to police,

      They could, in the future, or indeed now, be herded off to a huge factory type, over medicated hell village, backed by venture capital, which is sadly, what it appears the government is aiming for ie monopoly venture capital control of care..

      Which, is a desperate thought for them, and family members.

      • It’s not for ‘authorities’, who at the end of the day are made up of ordinary people (and are not experts on our children), to give or not give us rights to police our children’s care, as Lord Justice Munby says, ‘the local authority is a servant, not a master’.

        We naturally have authority or duty to protect those we brought into the world, and each other. There is no moral basis for anyone to block this as ‘control is likely to be nothing but counter-productive’.

        We know there is bullying of employees within government organisations that they commit to stamp out, and of course the same people will do that to families, if they can get away with it.
        I totally respect your view, as that’s how it seems. It’s not good.

      • It is not my view, it is the law, and I was shocked by it.

        The simple truth is, we have no rights over the care of our vulnerable children, with have at most merely consultation, and, they similarly have no rights, merely consultation via an IMCA..

        The LA/HSC trusts can provide whatever care and medical services, they want to, and enforce them on the vulnerable by court proceedings under MCA, if they have to, and there is little the vulnerable or the parent can do.

        The state has complete control, that is the law now, thanks to MCA.

        And, we need FOI notices to find out the number of LD/autistic in a LA area aged between 18-25, and, how many are living with their parents, and how many were subject to COP proceedings.

        These figures will speak for themselves.

  6. simone permalink

    Okay you and others can continue to keep getting argry with MENCAP and other FOR organisations not doing anything – which I agree with or we can harnase all the positive energy out there and start working with user lead organisations where you will get a positive response – unsure what is the resistance is here about campaigning with people with LDs in leadership roles.

    • I’m interested to see the impact that Learning Disability England has Simone when it is launched.

      • simone permalink

        Not another group – that is probably not set up by disabled people with LDs – why not stick to People 1st self-advocacy – This is the org that tried to campaign against much of the MCA – we argued that the bill should start from mental capacity, and that advocacy must be available for who need it, asset of principles etc – People 1st got people with lDs into Civil Right s legislation and direct payments leg – Steven would not benefit from DPs if PEOPLE FIRST did not campaign for our inclusion – originally it was for disabled people with physical impairments and we thought to get the “willing and able” guidance to be rewritten so that disabled people using direct payments could have appropriate support and if necessary to have it afdministrated via a trust set up by disabled person. Unsure why you are looking for an org that will be set up in the future rather than one that has been going for over 30 years.

  7. Sorry – one last comment.

    I was an IMCA (briefly), and IMCAs are usually involved if family aren’t already involved.
    Families represent the person in place of an IMCA, unless there’s an exception.

    The law doesn’t say that poor care is acceptable, adequate care is supposed to be monitored, and if a person suffers neglect it must be exposed, and no law says that parents cannot protect. If it did, then the law would have to change.

    There’s enough evidence in the CIPOLD enquiry about discrimination, and government good practice policies promote family and individual views. Guidance it might be, but HSC must demonstrate good practice.

    I know what you’re saying has truth in it because there’s been less accountability in the last 5 years than ever before, I think, but we still have to keep up the good fight.

    • ‘The law doesn’t say that poor care is acceptable’

      I did not say it did, I said, it does not allow the parents, or, the service user rights over it.

      And, the only monitoring of it , is the CQC, and the LA/HSCTs, who have commissioned the care, and would therefore be liable for it, if inadequate, so there is a conflict of interests.

      Winterbourne View, and Thomas Rawnsley’s abuse and death in two different supported living placements, illustrate this, and, the fact that their parents could do nothing about their children’s care.

      These examples,are the tip of the iceberg, as many such deaths and abuse, are not being exposed, as they illustrated-.Whistle blowing is difficult, as it was in Winterbourne View and, does not result in action being taken.

      If we are to protect our children, and as you say,’ keep up the good fight’, we must acknowledge the basics, and fight to change them.

      At 18, the care support users, nor their parents/family, have any rights, as the former are being , deemed incapable under MCA.

      Even NAS acknowledges this to be the case see,

      IMCAs, as you will know, merely have an advisory capacity, and have no powers in the actual decision making process, as to what is in a person’s ‘best interests’ under the MCA.

      In court proceedings, a vulnerable person, is represented, not by their parents/family member, but by an Official Solicitor appointed by the state/court of protection.

  8. IMCAs can actually go to the Court of Protection to challenge decisions, if they see injustice and are truly committed to seeing an issue through; it’s in my training notes.
    It must also be in the MCA Code of Practice – the bright green book that costs £20.

    I’ve been to a few Irwin Mitchell talks for IMCAs and LAs, where a few IMCAs asked about going to court – but most IMCAs just advise, that’s true.

    A family member (not the parent, but other family) can be the cared-for person’s litigation friend in court proceedings – if they are capable – most often don’t because they are so weary and aren’t getting any support.

    I’m not a legal expert in any way, just had a very sad experience, and agree with 95% of your blogs which inform me every time I read them.
    I just don’t want you to sound as if there’s no hope, or maybe I misunderstand you.
    Poor care must be challenged, however we do that, that’s all.
    I had several professionals privately supporting me – they know what’s right too, but often seem hesitant to say anything.

    I saw your NAS blog before, and it makes chilling reading.
    Maybe we should have a seminar to clarify all this.

    • From all my investigations, legally IMCAs, cannot, actually be involved in the best interests decision making ,

      They can advise, and make court witness statements, but can be ignored in law.

      Whilst a family member can apply to the court to be a next friend, in practice, again, we need FOIA notices, a paid state solicitor, will normally be appointed.

      And, the usual reason for going to court of protection, in welfare applications, will be, that the family care, is inadequate/inappropriate,, so there will be a conflict of interest, between the family carer, and the cared for, and, this will mean COP, will not appoint the family member as their representative.

      If they do manage to legally represent, they will be against two, possibly three, if the health and social care trust is joined as a party, specialist lawyers.

      We need FOIs, and facts about what is actually happening in the public domain,.

      There can only be hope, if we know what we are up against, and do not bury our heads in the sand.

    • Yes, that’s definitely true. In our case, Steven’s IMCA got all the court papers and would have made an application if she hadn’t gone on a few days leave. Purely by chance, in her absence, I found a solicitor who made the application. A good IMCA will be doing a best interests assessment. Justice Jackson described our IMCA’s report as “the first best interests assessment that deserves the name”.

      • IMCA has a role to fill in gaps, before there is a standard DOLs made.

        But, I am talking about best interests decisions generally ie before removal to residential institution, where a DOLs must be applied for to retain, or remove that person there.

        Why, in any event, would you need/want another member of the state, to act for a person, to advise them, and make representations on what they think is in their loved one’s best interests, if that person, has a loving family member, who knows them better than anyone and can do this?.

        And, as the IMCA/RRP is paid by the state, albeit via a charity, is he really going to, even try to upset the apple cart, if all professionals, social services want a DOLs in a particular placement?t


      • Our IMCA was prepared to upset the apple cart and I’ve met several who wouldn’t think twice about doing it. When confronted by a DoL for the first time, the person detained and their family will nearly always require the input of an IMCA. Just to get their heads round the intricacies of the law. If we’d had an IMCA on Steven’s first DoL he probably have been home 8 months sooner.

      • Depends on the IMCA, and still has no real power, and only over DOLs stop gap, as OS, LA, lawyers etc, and ultimately judge make the decisions.

        Remember IMCAs, are provided by charities, and the money for them, is from a state, that wants to create a venture capital industry out of residential care for the disabled

  9. Finola, I know of families going to the Court of Protection e.g. if a care provider’s care is inadequate or worse, in which case, a family member was the representative.
    I’m sure you’re right about the other usual cases you describe.

    Mark, your judge was just, as best interests assessments are mostly the best interests of care providers.

    • But in what capacity, and, do they get anywhere,?

      And many families are excluded , only get supervised visits, and/or are too frightened of being excluded to risk complaint.

      • We know the general disgusting situation. Money and power abuse.

        We all still need anyone with power who will help.
        Mark had a good judge and IMCA and solicitor, who helped in some way.

        Yes also to Simone, as we should involve leading people with LDs as supporters or advocates.
        I am my child’s best advocate, and had an advocate myself too at one time to support me to be his advocate (as I was being blocked), who was my supporter. I was also a Carer’s Advocate at one time years ago, when there was some common sense, supporting parents to get better care packages for their children.
        There’s a hierarchy in who should advocate when a person can’t speak for themselves, and parents are described as the ‘natural support’, but then mostly ignored.
        Jim Mansell’s work put ‘I and my family are at the centre of my care’ (check the whole sentence).

        A big study at York University, (a meta-analysis) of 100s of young people with autism in ‘Research Policy and Planning’ (in 2013 I think) was clear as the young people overwhelmingly said they always wanted their parent being their key worker. They didn’t trust others, full stop. They were frightened of the world.
        Ours cannot even speak and this sort of study shows how the MCA is too service-focussed, and too complicated.

        Assessing capacity is VERY BADLY done, and I’ve campaigned as an ex-IMCA too about how supporting the person to understand and make a decision is so often done in a rush to suit services.
        A nurse at a conference said to me ‘Professionals (in learning disability) ruin people by making every little thing more complicated when the problem needs simple clear thinking’.

  10. Reblogged this on arthur~battram… and commented:
    A moving half-hour documentary, just out, about the 3000 children and young people with autism and learning disabilities, imprisoned in for-profit care homes at vast expense when they could be cared for far more cheaply at home. A bizarre and inhuman mess.

  11. simone permalink

    video – 30 minutes – was there a squeak from a person with LDs or an org of People with LDs representative – I do not know why there is no appetitate for anyone to work with speaking up groups – what is the issue and let’s talk about it

    • That wasn’t for the want of trying Simone. I know that the producers tried really hard to get interviews with people with LD but hit a brick wall. The film was about ATUs, so they wanted people with direct experience of being in an ATU.

    • People First are a brilliant organisation but are one of many. I admire the work of My Life My Choice. Learning Disability England’s two principle founders are one disabled person and one learning disabled person. Whatever the organisation though Simone, I wonder how that organisation would get access to Steven in order to represent his voice. Or how he would get access to that organisation. Or how that organisation could better represent him than his family.

      • Hits the nail on the head,

        The MCA was sold on the back of empowerment of the disabled . What happened ?

      • simone permalink

        Thanks Mark for responding to my email and lets talk about the role of speaking up groups and LDs lead organisations. People First self-advocacy like ALLFIE (where I work) are well placed to take on the strategic role for campaigning for change in law and policy etc. Our sister org Inclusion London has just received funding to develop its strategic legal work – taking on test cases related to community care legislation. So I would see that People 1st (self-advocacy) and other local speaking up groups to have a substantial role in the LB Bill work – campaigning for changes in law that give all disabled people with LDs a right to live in their local community. Some local speaking up groups may have advocacy workers – so this may help with the 1-1 work. It be good for parents to link up with local speaking up groups and if they have resources to help or of course you have some that would benefit the wider LD lead movement (do not mean necessary money) would be helpful.
        1) Much more strategic involvement of People with LDs via Speaking Up groups including People 1st (self-advocacy) in various campaigns – nothing about us without us.
        2) Work with us to find out what we want in legislation and policy and ensure that is included at the beginning rather than during the end of the process – I felt the LLBILL did not go far enough – really do not want the courts to determine whether people with LDs should be living in their community – that should be an absolute RIGHT.
        3) Whenever you are daughters and sons are connect with your speaking up group and see what can be done together (how people with LDs be involved will depend on the nature of action taken)
        4) Write letters and do anything publicity ask People with LDs to be involved, any press statements, writing supportive submissions to court etc – ALLFIE does this …
        Hopefully others will share there thoughts here.
        People first (self-advocacy) held various campaigning activities about our concerns of the Mental Capacity Act – as a result advocacy is acknowledged even if its not good enough, 5 principles came about from our campaign work plus rephrasing the Bill from being one about mental incapacity to mental capacity.

  12. In a sentence, the 5 principles of the MCA aren’t followed, as people (professionals as well as care managers, etc.) naturally assume lack of capacity even if they say they don’t (and in a blanket way, not even re specific decisions), minimal involvement of parents or families (who are usually the most expert communicators) means that no real support happens to enable the person to communicate in a way they know or choose (wouldn’t anyone talk to their family first, and wouldn’t professionals do that too), and unwise decisions in practice often are agreed if they suit the service (they say that it is the person’s choice), best interests; if even the judge had only seen one proper assessment, and restrictions are all of this and more.

  13. Yes, and so the principles must be followed as long as we’re stuck with it, until re-written or a new Act comes out, co-produced by family experts.

    The Human Rights Act is (fairly) simple and easy to understand, but even a senior psychiatrist told a group of us last year that he doesn’t understand the MCA, even though he’s trained, and that no one else he trained with understands it either.
    It’s not workable.

    I also see services encouraged much more to do more DoLS assessments, to cover themselves legally for restrictions, but no equal encouragement to do basic or useful communication (like the useful symbol timetable).

    I’ll read your links now – I hadn’t seen the House of Lords report.

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