Mencrap and block

Neil Crowther wrote a post this week in response to the picture of someone buried beneath shopping in a shitty doorway while their Mencrap support worker smoked a fag and chatted on the phone. Among the points he raised was the inappropriateness of Mencrap’s response to this happening. Distancing themselves from what happened, talking instead about “a photo on social media”. At the end of the post he raised a sensible set of questions.

The CEO, Jan Tregelles, responded to his post with an overnight blocking spree. Carnage among #JusticeforLB campaigners.

Dusting ourselves off this morning, we’re not left wondering where the voice of learning disability went so wrong.



48 thoughts on “Mencrap and block

  1. Let us not jump, as MENCAP etc want, to blaming the care worker.
    We must look, at what is the real horror behind the photograph.

    In the last two years, I have had over 30 different such workers, in my kitchen.

    All zero hours, on at best, paid minium wage, no sick, or holiday pay.

    Care workers, are now, so oppressed, they only stay as such, because they have been forced off benefits, and can get no other work.

    Many, are illegal immigrants a CARE 4 agency was closed down two years ago, not because of the care services, which are effectively unaccountable, but because it was found, all workers on their books were illegal immigrants.

    Some workers, if they can, use ‘care support’, as a stepping stone/training to a care team leader or social worker.

    Support work is, itinerant insecure, and totally prescribed.

    I have noticed such workers, outside supermarkets ringing up for the van to take the ‘disabled’, and their shopping back to the ‘supported’ living units.

    Read here how badly these workers, were treated, when Venture Capital backed Cambian, took over their supported living provider Lifeways, and MENCAP has told some of its training Colleges to this venture capitalist.

    Last year venture capital backed Cambian, paid 250 million for the care of just 1500 learning disabled and autistic being provided for by Lifeways, and the future potential income particularly in view of the government’s independent of family living policy..

    This is the goldmine, the person, in the wheelchair represents.

    Why is the person in a wheel chair, if he is being ‘supported’, by a mental health charity ?

    I have seen autistics, that appear physically able, wheeled, clearly drugged out of their minds, around art gallaries by care workers.

    Risk assessment for efficient care and low insurance premiums,and drugs force the able into wheelchairs for life?

    The person, in the wheel chair, is being used as a commodity for profit, albeit in MENCAP’s case, recycled.

    MENCAP will be paid at least 4,000 per week, for this ‘care’, this is the LD/ASD life in the community, this is their independence, choice, and dignity.

    And, this is the real scandal, not the smoking worker.

    And MENCAP, is a charity, which is a government mouth piece for use of the MCA, and courts to harvest, as many commodities for profit as possible, like the person in the wheelchair.

    All charities mencap etc services of ‘supported living’, will soon be replaced by venture capital owners like Cambian etc, and this is the aim of the government.

    This sort of publicity can only encourage this.

    • I believe the care agency was in Surrey’s domain. Surrey then had to do an emergency clearing up to ensure that all clientscontinued to receive appropriate care. Read serious case review death of Gloria Foster.

      • What worries me, is that people’s son and daughters, are being thrown into such ’emergency clearing up exercises’, for huge sums of money, without oversight, or a clue, as to what is happening to them, and, without their own parents, having the means to find out.

        Meanwhile, huge sums of public money is spent on courts, OS, LA, HSCT lawyers, social workers, experts etc, the list is endless……………..

        And, what does it all boil down to ?? A minimum wage zero hour ‘carer’, pushing a wheel chair, doing what they like with the commodity ‘cared for’.

        The ‘disabled’, or in the case of the LD/autistic, made disabled for profit person, cannot complain, his family will not know, and even, if they do, no one will take any notice.

        The court of protection has no oversight, and only protects the vulnerable from their own parents.

        So, the state throws their most vulnerable into a profit making, itinerant machine, which is ever changing, ever more efficient, and ever more profitable

        And ever more dishonest, and self preservatory. No wonder so many are dying.

        And, this in law, is in their ‘best interests’, and their independent life ??

  2. I’m a single mum who undertakes the 24/7 care of my son, these days and for many years now, completely without support. My son is primarily physically disabled and has an involuntary movement disorder which can keep him, me and the neighbours awake all night, many nights in a row. My health has suffered, I have collapsed with exhaustion repeatedly and been hospitalised. I get less than £63 per week Carers Allowance. There is something seriously wrong with anyone that would for even a split second, think that its OK to dump shopping on top of the person they are (not) caring for.

    Whilst I sympathise with the plight of employee carers and support the fight for good pay and working conditions for all, it is wrong to try to justify any form of abuse. It is shocking, not just for the act itself, but that carers are so confident no one will object, they happily continue their abuse in public. Indeed, if they will do that in public you have to wonder what they get up to away from public view. I shudder to think.

    My son and I live in terror of the day when he will have to go into care. The prospect is, of course, worse for my son, but I also live in any agony of anxiety about it for him. Cruelty must be exposed and criticised at every opportunity if it is ever to be understood by all as unacceptable. It is a mistake for relatives and friends of those in care to identify too strongly with the organisations and individual professionals involved in the care of those they love. It is for us to fight, tooth and nail to protect from harm and to improve the quality of our loved ones lives. I believe it is essential. with society under such extreme attack from it’s own government, that those fighting for and supporting disabled people in their struggle for good care and support, must be single minded in that aim.

    Abuse is inexcusable, there are no circumstances where it is acceptable.

    • The problem with the cruelty is, it is now systemic.

      The Autistic/LD and even other disabled, are being deemed effectively insentient ie incapable of making any decision under the MCA.

      And treated as if they are unaware of anything.
      Therefore unaffected by cruelty.

      To aid ever cheaper care, for more profit, as venture capital are now moving into the supported living industry.

      This has been planned for years, to boost our economy, and make millions for investors.

      Worse still, these vulnerable are being torn illegally, from loving families, who care for them well, without support by the Court of Protection see my blog by googling my name.

      Many, in fact most parents, do not get the opportunity to even see their own children on a regular basis, and have no rights over their care, or medication once that person is 18.

      Court of protection are removing all children once adults, and there is no oversight, or control of their care, but there is a regular on average £4,000 paid for it, without question.

    • Completely agree with you Any abuse is totally inexcusable As for the carer to smoke and chat on the phone is again quite a common occurence The carers should be banned using the phone except in emergency situations They are being paid to care and chat to a person rhey caring for and not for blethering to their friends and family It is a huge problem The person in wheelchair has to put up with all the nonsense from the carer while they ammusing themselves onvthe phone its not fair and it is disrespectful towards the person they caring for Absolutely shocking incident but very common unfortunately

  3. two people , shopping and what is the bloody problem ? if both were ambulatory no one would have noticed a thing. No one knows that the person in the wheelchair isn’t responsible for all the purchases and people in wheelchairs are as likely to offer to help ‘ carry ‘ another person’s shopping as anyone else. Anyone familiar with the scenario of shopping with someone who uses an attendant wheelchair will have replicated the scene at the end of the day a million times over. Anyone heard the opinion of the supported person on the subject ? their arm is positioned to support the bags temporarily in a perfectly normal way.

    • You’re missing the point of the post Nic. Neil’s original post that seemed to prompt the blocking was mainly examining the statement put out by Mencap after the photo hit the press.

        • Oo er. I agree with Mark, Nic. The point Neil was raising was Mencrap’s response to the pic was wrong and the blocking of people by Jan T underlined their crapness. The picture looks pretty abusive and it’s up to Mencrap to find out exactly what was happening in it. Having said that, I also think Finola raises important points below. 🙂

  4. I always think ‘would I like that’ when situations like this occur. Do I find this acceptable? Never once when my son used a wheelchair did I feel the need to carry my/his shopping on his lap – his lap is not a replacement for storage, and if it was a temporary what’s wrong with the floor? Under no circumstances is this acceptable NO! And as far as MENCRAP blocking accounts – clearly this is a fingers in their ears not listening, la la la move. Man up MENCAP listen and learn!

    • Clare I never felt the need to use my daughter’s person as storage but I can think of many times ( some epic shopping trips setting up home ) when she could have been snapped with a supporter literally covered in purchases including pyrex dishes and a mop, her supporter may even have been eating a sausage roll ( an agreed version of lunch on the go ) She loved doing her own shopping and had she been able to walk she would have been carrying the same purchases just armfuls as opposed to handles/lap/ balanced. I guess someone would have felt it their duty to snap her and then someone else their duty to muse upon official responses. I don’t know what else MENCAP can do besides investigate . The blocking saga beyond my lived reality.

  5. A lot of interconnected wrong things here:

    Mencap’ CE’s petulant response to these intelligent and mature questions seems almost juvenile ? ‘Peters Principle’ or something more worrying ? Unless Mencap grows up and answers these fundamental questions concerns will grow?

    Cant help feeling sorry for seemingly neglectful publicly humiliated care assistant. The poorly paid bottom of the lucrative care pyramid easiest to shine a light on, and feels the sting of easy outrage stick again.

    We ALL see the herded in shared misery ‘disabled’ in shopping centres. At least the man under the shopping has a one to one with his support worker, and this picture cannot communicate the relationship outside of that weary moment. But it reflects something we all know.

    I have never seen happiness in the faces of those herded sans choice round a shopping or town centre. I saw a miserable man who had wet himself in a group the other day. I drew a worker to one side, not well received, was pointed out only two to support two wheelchairs and 4 walking/trailing behind, an impossible task.

    Commissioners, souls grown corns say ‘am only doing my job’ seek out cheapest tender, care managers say same when they routinely amputate the life out of people who cannot object. Then comes the powerless public face, the humiliated support worker who may have three jobs to etc etc.

    All are inter related……and when the well heeled ‘Face and Voice of People with Learning Disability’ goes all peevish when this is questioned, it is right that their role and claims are questioned ?,

    Mencap, grow up.

  6. My son uses a wheelchair when we are out, and he loves shopping. He asks for the basket to be put on his lap so that he can take the goods off the shelves for himself, and yes sometimes he wants to carry some of his purchases on his lap. His choice. The photograph? Could have been me phoning for my husband to come and pick me up. No. I do not smoke so I would probably talking to my son. Or maybe I could be tired and just resting. A snap photograph is just that.

    However the response from Mencap is disgusting. Yet again they ‘circle the wagons’ in an attempt to distance themselves from any wrong doing. Another denial. When are they going to realise that PR is not what is needed but real solidarity with the people they claim to represent. Suck up the critism and learn from it. Blocking people is just childish and proves that the organization is a self serving one regardless of all the hype and PR.

    Nevertheless no one should take this criticism and aim it at the local mencaps. My poor ill son is going to a Mencap scheme in my local area which is staffed by the kindest and loving people. They are giving him some stability. Something that he needs right now..

    • I haven’t seen any criticism of local Mencap’s in this story Pauline. We’re just off to our local Mencap swimming pool and will have a whale of a time. There is a universe of difference though between the brilliant volunteers who run the pool and the attitude of National Mencap in, (a) issuing that dreadful statement, and (B) blocking people who challenged it.

  7. Mark I realise that Sara’s blog is not aimed at the local Mencaps. (Is this where I tell you to piss off)? I just had to distance my local Mencap from the Royal Mencrap sitting up in Golden Lane London,

    • ….but there is an issue here? Where are local Mencap societies in this ? These most recent ‘stupidities’ ( being kind) by National reflects on all the good work of the local societies that carry the name.

      Work done and funded largely but not solely, by hard pressed already caring for a LD family member, families. These satellite societies pay dues annually to National. Suggest they withhold dues and challenge the current petulance etc etc till National behaves the Brand touted in their name?

  8. One of the NW Regional Self advocates’ wants when telling the LWLDA of their concerns was proper pay and training for support staff. We see Mencap’s CEO justifying her salary with saving £6m so the Q is how was this saved?. They’ve had 2 inadequate/need for improvement judgements by CQC. Perhaps they should be paying people with learning disabilities to be Experts doing their Q/A? With this latest glimpse of the quality of their support, have they cut the wrong things?

  9. Neil here – I think there are questions to be asked and answered about what the photo actually shows and I am guilty of leaping to a conclusion based on a single image in a way that is potentially prejudicial in making assumptions about both the worker and the person being supported. However, as Mark has said, my post centred on how Mencap responded. It’s important to note that their press statement describes what is happening in the picture as ‘appalling’, hence indicating that they regarded it as an incident of abuse. The rest of their response is therefore an indication of how they publicly respond to an incident of abuse by a member of their staff, even if it later transpires that what is happening in the photograph has been mis-reprensented. On that basis I stand by my comments and believe the questions posed demand answers.

  10. Mencap, Enable, they all the same. They do not pay enough to the care workers, they take on anyone who is willing to be doing this work. There is not a selection when interviewing the people for the job. It’s a question who is willing and and we shall employ you whatever…..without training, experience, and most of all passion towards this kind of work! There is a case (Enable) where a LD woman drowned in the bath while her care worker was watching Eastenders with another woman with LD in the house. Margaret who drowned has had epilepsy,and therefore she should not have been left in the bath on her own AT ALL! She should have been with someone all the time while she was in the bathroom and bath. It is a must, but do they know this? Are the carers appraised about epilepsy patients, because they need special care to avoid all kinds of accidents. That much for big organisations, who do not know what is going on in individual homes.
    Shocking, upsetting and beyond any other comment. It’s happening everywhere, and the cure for this kind of neglect is almost not achievable. The sickness is in the core of the system.

    • Exactly, and there is not one organisation/government/charity that is admitting this ‘sickness in the core of the system’ and until they do and there is a ‘will to heal’ it will continue. There are so many of these awful stories and barbaric practices going on ‘lessons are clearly NOT BEING LEARNT!!

      • This practice, of systemic cruelty, and use of the vulnerable, as commodities is the lesson that is being taught by the government, in fact, three successive governments.

        It started with the implementation of the MCA in 2007.

        They do not want to ‘learn lessons’, in fact, their audacity, at trotting out this phrase continually, shows their utter contempt for those they wish to use.

        What they do want is, an end to exposure of their abuse and use, even the little that exists.

        They have already made themselves unaccountable, and all is hidden, and fixed through their investigators behind closed doors.

        And that is, not just the abusive care hundreds of thousands suffer tonight, but, the amount of public money being spent on this, and, even the number of actual deaths, and their causes.

    • Worse still, the ‘disabled’, are being forcefully removed for life by the Court of Protection, from families, who do care, and, who the ‘disabled’ love, and want to live with.

  11. Sara and all of you Today is NATIONALMENTAL CAPACITY ACT AWARENESS DAY. Baroness Finlay informs me that she is not able to take on individual cases. The day is only for the professionals.- also read Mr Justice Charles lateststatement on appealing dols. We are all being played for suckers

    • We sure are Shirley.
      But we must also remember the political Damocles Sword that may conspire to make both the House of Lords and the Supreme Court, if you could get an appeal through the CA, impotent.

      Both could easily be abolished the later a Quango, the former gets a lot of stick for supposed privilege in the media.

      It is the lawyers and judiciary that need awareness of the actual provisions of the MCA. .

      As they ignore, the presumption of capacity, that exists, until incapacity, in respect to, a particular decision, which needs to be made, without delay, in a person’s ‘best interests.

      This incapacity,’, has to be proved by a capacity test, prescribed, and in accordance with s1 of Act ,on the balance of probabilities that the person is incapable of making that particular decision..

      They ignore, that blanket incapacity, and the capacity to make general decisions, is illegal under act.

      They ignore that, incapacity cannot be based on a particular condition ie autism, behaviour or presentation.

      They ignore, that even if incapacity is shown, as prescribed by the Act, this cannot be retrospective, so as to invalidate a Power of Attorney.

      They ignore, that the functional test, presupposes an expert knows, the workings of a person’s mind, which is impossible particularly if autistic.

      They ignore the test is completely discriminatory in respect to the autistic, because of their communication difficulties.

      They ignore that the test means nothing to the autistic per se.

      They ignore, that the UN has stated, it is illegal, to remove a person’s legal competence on the grounds of disability.

      They ignore that the test, is highly discriminatory, as ‘normal’ people are not made subject to it.

      They ignore the Act, that says all steps must first be done to maximise a person’s capacity.

      They ignore that a joint decision must be tried first.

      So, it is the social workers, experts lawyers and Judges that should be made aware of the Act’s provisions.

      And, also they ignore, what the House of Lords Select Committee Report ,now over 2 years old states ie that all this is being ignored.

      To remedy all this they have MCA awareness but not of its illegal practical enforcement by judges, lawyers, social workers and health trusts..

  12. Something I have been pondering is the starting point. A photo was taken and the photographer knew that the care worker was with Mencap, and so was able to post the image on Mencap’s Facebook page.
    I warrant that all of us have seen frequent evidence of awful care. In the last week I have seen:
    Workers ignoring their clients and chatting with each other or playing on phones.
    Workers stalking ahead while their clearly autistic clients strove to catch up.
    Workers dragging people in wheelchairs around shops when it is very clear the people are not interested or engaged in the activity.
    People in wheelchairs left staring at racks of shopping they can’t touch.
    Workers just radiating boredom and contempt.
    Now, one issue is how on earth control of quality of workers can be given. These people are paid the minimum wage.
    The other issue is that brutal , shameful behaviour is associated with anonymity.In all those cases I had no idea at all who was employing the Carers. I could confront the, and demand it-and be told to piss off. They were unsupervised. The people they were meant to be looking after could not report them. It used to be that the workers would be some of the time are drop ins and day centres where an amount of supervision happens. Now it’s the high street.
    Here is an idea. Could we not have a site for examples of crap care? Post photos of especially crap Carers by locale? Parents could check up to see if their child’s Carer was on it, Once people were identified agencies could be confronted with the evidence of what their staff are getting up to.

  13. I agree with all you say Sally and we have all seen it far too often. Too many support workers hate their job.

    The job carries shit pay and nil fringe benefits.

    Zero hour on the hour, journeys unpaid. (Or in 15 minutes depending etc). Nil power apart from that exercised over those they support. For good or bad.

    SW’s and care managers have power*, ask any family. Get good salary, can go to meetings and complain to each other and share biscuits. Families are mainly grateful. SW’s et al have professional status and freedoms, can use them both. Do own time keeping, have paid holidays and a pension etc. Permitted to be certain all the time. (*Have power).

    Adult Care Managers have even more power* and have budgets. Can go to lots more meetings and complain with other managers, lean on care managers and share coffee and can have chocolate biscuits…Can boss other people nicely or not depending on inclination. Have bigger salaries and pensions etc etc. *Even more power

    Adult Care Execs, humungus power and massive status, sets the budget, gets own car parking place and china cup and saucer with coffee served in board room by CE’s secretary . Huge pay and gargantuan status, massive pension. *Loads of power.

    Support worker gets to push the wheel chair through town in the rain for pennies. And the blame ?

      • Absolutely agree. Have have made numerous complaints on such. Where even the worst incidents, some life threatening, were repelled by agency and LA, and when pursued were not taken to Safeguarding process.

        Responsibility and Accountability for this abuse lies at the peaks of the Power ladder, but is rarely seen in action.

        The people with maximum power are responsible and accountable for the purchase and delivery of safe support yet they contract the cheapest agencies who take any one still breathing, and are who reluctant to sack their worst workers for fear of exposing abuse and losing contracts.

        Key CE’s show abysmal leadership, and go off in a precious pout when abuse by their service is exposed.

        Commissioners are reluctant to take reported abuse to safeguarding for fear of their National ratings going down.

        Families are scraping up the sweepings in terms of support time, and are terrified to complain (yet again) for fear of losing the little help they get. Ignored and rebuffed complaints use up energy.

        I agree, abuse is a crime and should always be treated as such. No ‘ifs’ and no ‘buts’.

        • And complaints about LAs care services provision, are halted by them, on their Court of Protection applications, and not reinstated.

          If your loved one is in their supported care provision, there is effectively no means of complaint, and, you will be cut out of, even visits.

          So, the services, for which £4500 per week on average is paid, ARE unaccountable, except by oversight of the body, that has commissioned them, and, would be liable, as they oversee and commission, so a terrible conflict of interests.

          And total power——– very dangerous for the poor service user,

      • Amazing input Trudy(15th March). I had to go back and look for your blog, since it is helping me to deal with Care Manager who just destroyed the seeds I planted 14 years ago for my daughters future. With one word to the Council (different dept) she managed to cause a lots of problems. Care managers have POWER and budgets and they decide who gets what. Care Manager does not think about the person behind their actions, they just tick boxes and dismiss anything as they like. I am livid and upset. How can a Care manager with a very little experience, no personality and no brains ruin life’s? and they are allowed to.

  14. if you personally think you are witnessing abuse intervene immediately where ever and when ever. Call the police if necessary on the high street to identify PAs/relevant agencies but a rogues gallery of photographs?

    • Of course, I would cal if I were witnessing abuse, such as the disabled person being put at risk . But I was talking about shoddy , uncaring, inadequate care. Ignoring your charge to play on the phone,stalking ahead ,etc etc are all shabby and uncaring but not technically abuse. Dragging a disabled person into charity shops because you, not they, fancy a look and a try on is not abuse. The police would not rush out. And If I marched up to any worker doing a crummy job and demanded to see ID I would be told to get lost, and the person is under no obligation to show me anything. I can’t alert their agency or the family of the person being treated so shabbily. So what to do?
      I could put them on “Crap Carers” with a description of what I had seen them do. (“The woman in green spent 20 minutes by my watch chatting to a friend while her charge was trying in vain to get his hat off his face”) Agencies would not get off Scott free once identified! (“The man in blue, employed by ‘We Care LTD’ ignored no less than six attempts by his charge to chat .”)

      • Sally I do agree, some support staff are neglectful and uncaring and when you witness those cruel and I feel they are abusive actions in public it is so hard to know what best to do. Filthy looks or jumping in, my frustration too. I am just so wary of name and shame by snap and comment. Very aware of the difficulties in getting reviews of agencies published unless deemed favorable.

      • A agree with you Nic. I am afraid of snap and comment too. But what to do? The argument is that workers can’t wear, say ,a badge or uniform as that stigmatises the person they care for. OK, but that means they are anonymous. If I see one doing something awful, I don’t know who to call to report it. (I also don’t know if the agency would take any action ,but that is another matter.)

        • So, they are not stigmatised by being under all that shopping, for how long was it building up /

          And, is this the only policing, of the support, of our most vulnerable, in their life of independence in the community, in their MCA best interests, costing £4,000 a week.

      • So true Sally.My daughter goes out with support workers on daily basis. They are hand picked by us. I have quite a lot of experience now in getting right staff, but even now I make a mistake and appoint the wrong person. The trick to some extent is to have detailed structured plan in place of daily activity and hope for the best .The contract says one hour walk in all weathers among other activities on a particular day. I have found, that it is the most unlike activity most Support workers want to do, but at the interview they all say its fine!.I could write a book of excuses I have had. I do keep an close eye and micromanage the whole situation.I feel sometimes like a detective, but I would move mountains to give a good quality of life to my daughter. I do also see many LD people not getting the care they deserve.

  15. So this is ‘care in the community’ is it? What a bloody shameful con trick ‘care in the community’ has become.

    My son liked his day centre before the LA closed it down and stole the land and sold it to developers. Like many of his peer group he felt comfortable there. Not always perfect, but for him better than care in the community. Not many 1-1 support workers because the centre staff all mucked in together. A real friendly atmosphere. Everybody knew each other.

    In truth some people hated the thought of attending a day centre and many parents hated the idea that their loved one would be asked to go there. Their choice. Let the people who do not want the day centres take up the offers of alternative services. By shutting down day centres for the people that liked them, they have actually taken choices away from the people that wanted them. Is that fair? In truth the solution should have been to provide both alternatives. Is that too hard.? That is real choice.for everyone. If person centred planning is the name of the game, then real choices should be on offer, not this is what we have got, take it or leave it.

    • Hello Pauline. What does it exactly mean Care in Community does ot mean the Community cares? I have lived im the se hpuse fpr the last 30 uears with my LD daughter and my husband in a nice area I can tell u there isn’t care in Community nobody wants to know on the contrary we had plenty cpmplaints about parking since we have a bay for disabled outside of our home What else can i say ? It is very sad maybe u can put se light on this thank u

      • That is why, the government want, their version of,”living in their local community’.

        This photograph shows what that means.

        The disabled are to be over risk assessed, and wheeled out, even if mobile, to wherever designated ,whenever designated, by their commercially aware care provider.

        The public, are now getting used to seeing the ‘disabled’ in lines, or individually, around supermarkets, in parks, and art galleries, often, these ‘disabled’ are largely oblivious to their surroundings, and, ignored by their itinerant, ever changing ‘support’.

        And, there is little chance for them to have any contact with the public, or, indeed any other human being.

        So, the public, can keep them at arms length, almost, out of sight.

        Whilst family and parents, cannot go shopping with them, and have to arrange visits, if lucky in their own children’s, deemed ‘own homes’.

      • Suzanne I am so sorry you have experienced hostility from your neighbours. So sad when an already stressful life is made worse by the inconsideration of others. You do not say whether your daughter has day services or not

        My 44 year old son, after school and college, accessed a day centre with some of his peers from school. I will be perfectly honest and say at the time I was dubious about whether he would flourish there. Such a big range of ages.
        But actually if you think about it, when a young person leaves school and goes into work, he/she usually goes into an invironment with a huge range of ages.

        ‘Care in the community’ was a buzz word dreamed up by the people who wanted to shut down day centres. Day centres were demonised by people who thought they stigmatised people with LD. For a lot of LA’s this way of thinking was like ‘manna from heaven’ for now they had the excuse they wanted to land grab the places these buildings were situated on. Day services were offloaded to the private sector. Some of these schemes worked and some did’nt. The ones that folded left behind a legacy of misery for the people who yet again had to adjust to changes to their lives that they could barely manage without the help of the chemical cosh.

        Suzanne some people never flourished in a day centre and for them maybe a better solution was reached. However for many others it was a disaster. Some call this progress. I call it unfair. Unfair because choice was ‘hobson’s choice’ for many LD people and the repercussions of these changes are still being felt by lots of families.


  16. Thank you Pauline for the above. My daughter(39) never went to a Day centre. We have tried it many many years ago, but The Day centre did not want her. She was basically dismissed and at home for one year. At the moment I am “running” a Direct payment scheme for my daughter and have done so for 13years. It means–advertising, interviewing, getting references, appointing paying and seeing on every day basis if all is well. I design the structured programme, which has to be followed closely by Support workers. We have a flexibility to a extent, but the finance is limited from LA. We have been allocated finance equivalent to 40 hours/week I have decided a long time ago,that quality is better than quantity and therefore we have only 20 hours a week, but I am able to pay decent wages. I am an employer as well a full time carer for my daughter. After I have done all that, there is no time for anything else .This option is the cheapest option of all for the LA .I am shocked to hear,that agencies are getting £4000/week for a wheelchair user. It is a real eye-opener for me. No wonder the LA is happy with me. This is a great site I have learned so much .Going back to original question, here in Scotland Care in the Community was too expensive and it is an outdated scheme They going back to institutionalised options which are a lot lot cheaper…I do have sleepless nights what the future holds .Reading through this site it looks bleak.

  17. Sara may I refer everyone who reads your blog to my comment on Mark’s blog this morning, suggesting you all e mail Baroness Finlay “” and the Law Commission “ Lets get ourselves heard

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