On Thursday, the House of Lords published their report following their investigation of the Mental Capacity Act. 60 witnesses were called and there were over 200 written submissions – it was a very thorough piece of work. Being an MCA and DoLs geek, I’ve been waiting weeks for the publication but I didn’t dream for one moment that it would be so hard hitting and damning as it was. The whole morning, I found myself muttering – “They listened. They bloody well listened”. I’m not sure whether the other professionals who gave evidence felt the same but for a carers’ experience to be heard and taken on board is completely revolutionary. That just doesn’t normally happen in social care. Quite the opposite – there often feels like a deliberate move not to hear the voices of the carers and families.
Going for the jugular from the off, this is what the Lords had to say about the Deprivation of Liberty Safeguards:
“The intention behind the safeguards—to provide protection in law for individuals who were being deprived of their liberty for reasons of their own safety—was understood and supported by our witnesses. But the legislative provisions and their operation in practice are the subject of extensive and wideranging criticism. The provisions are poorly drafted, overly complex and bear no relationship to the language and ethos of the Mental Capacity Act. The safeguards are not well understood and are poorly implemented. Evidence suggested that thousands, if not tens of thousands, of individuals are being deprived of their liberty without the protection of the law, and therefore without the safeguards which Parliament intended. Worse still, far from being used to protect individuals and their rights, they are sometimes used to oppress individuals, and to force upon them decisions made by others without reference to the wishes and feelings of the
person concerned.
The only appropriate recommendation in the face of such criticism is to start again. We therefore recommend a comprehensive review of the Deprivation of Liberty Safeguards with a view to replacing them with provisions that are compatible in style and ethos to the rest of the Mental Capacity Act.”
How about that! Go back to the drawing board. Having been on the receiving end of the abuse of the legislation, this is overwhelming news. And tens of thousands of people being unlawfully deprived of their liberty! All those stats we read on DoLs have always felt meaningless. That’s because they were (are) meaningless. All those hidden people away from their homes – we should be ashamed of that.
I feel a note of caution. I think it would be unwise to scrap them before something better is in their place. For all their faults and the numerous way they are abused by supervisory bodies, in the absence of anything else, they do provide a route for families to challenge the detention. I’ve said many times (and its quoted in the report) that without the DoLs in place, Steven would now be in the hospital in Wales that Hillingdon wanted to send him to. Challenge without a DoL in place is nigh on impossible. Lots of people contact me, where their sons and daughters are in similar situations to Steven in 2010 and they cannot get a DoL authorised for love nor money. Authorities may not want to go down the DoL route because it means their actions will be scrutinised. No DoL means they can effectively do what they like without any external monitoring. So, please, please start the planning for a replacement legislation immediately but don’t leave the people at the mercy of the DoLs even further up shit creek without a paddle.
Another section of the report that had me singing was about capacity assessments. About a year ago, I wrote a series of blog posts about the downright unfairness of forcing the learning disabled to justify and evidence all of their decision making process – something that the rest of the population never have to do. I also felt, that it was extremely unfair that the only thing being measured as proof of capacity/incapacity was the person’s cognitive functioning. What about their feelings? What about their gut instinct? What about their right not to make a decision? The Lords called for a review on how mental capacity assessments are carried out.
The other biggie is the recommendation for an overseeing body who has overall responsibility for the MCA. So simple. We hear time and again of how big systems have no accountability. The awful death of LB in an NHS assessment and treatment unit and the vile actions of the provider, Southern Health, illustrate this only too tragically and shamefully. I’m not sure if one single body will solve all the problems but it’s a very good start. How can the people charged with implementing and carrying out this legislation been allowed to ignore it for so long. The Act is nearly 10 years old for godsake. I don’t buy this stuff about it is still being “bedded in”. And I don’t buy “ignorance” as a wholesale explanation for the failing. The are plenty of examples in the report of authorities deliberately manipulating the Act to get the outcome they want. I can’t think of any other piece of legislation that can be ignored or abused so wantonly without any serious repercussions. You and I would never be allowed to get away with it.
There were many other features of the Neary vs Hillingdon case that showed up in the report as being more widespread than just Hillingdon. The ones that stand out for me are: the poor use of the IMCA service. In our case we were blocked from getting an IMCA for over 6 months. The report recommends consideration to be given to P or their family being able to approach an IMCA service directly rather than have to wait for a referral from the supervisory body. I can die a happy man if that one is taken up. The Lords tackled the best interest assessments and decisions and raised huge questions about them too. Here’s what they recommended:
“The rights and responsibilities of the different stakeholders which are properly conferred under the Act are largely unknown. This makes the effective exercise of those rights, and the proper discharge of those responsibilities almost impossible.
The general lack of awareness of the provisions of the Act has allowed prevailing professional practices to continue unchallenged, and allowed decision-making to be dominated by professionals, without the required input from families and carers about P’s wishes and feelings.
A fundamental change of attitudes among professionals is needed in order to move from protection and paternalism to enablement and empowerment. Professionals need to be aware of their responsibilities under the Act, just as families need to be aware of their rights under it.”
Bloody brilliant.
What happens next? That’s the big question. Will this incredible report gather dust somewhere and be forgotten as people go out about their business in the same old way. That can’t be allowed to happen. Everyone with a stake in this must continue to push for the big change to happen. We owe it to all the people who fall within the scope of the Act.
Love, Belief and Balls 
I am stunned. I am overjoyed. It has at last and at least been stated in writing. A true beginning. Now there is an honest chance for our beloveds. Yes, there is a hell of a fight to be had yet. But NOW there is something to fight WITH! Blessings…
Mark, do you have a link to a news item about this?
Here is the full report Richard – http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/139.pdf
Great.
Do you think there’s another battle on the horizon unless the draft SEN Code of Practice (statutory guidance to accompany the recently-passed Children and Families Act) is drastically revised? If it is not, I fear LAs will have (and may well seize upon) an opportunity to cut families out of decision-making by and for young people with intellectual disabilities, as soon as the child reaches 16. Especially since the new Education, Health and Care Plans will not be just about schooling, unlike the Statements of Special Educational Need that the EHCPs replace.
“5. It is a serious omission that the issue of mental capacity has not been clarified in Regulations. As drafted, legal rights to engage and challenge LAs will automatically transfer from parents to the young person at 16 years old. The potential for parents to be barred from continuing to act as advocates for their child is real and needs addressing now.” (http://www.ipsea.org.uk/news/changes-to-sen-law/ipsea-response-to-the-draft-sen-regulations-draft-sen-code-of-practice-transitional-arrangements.aspx)
I really hope it isn’t going to be one step forward and two steps back, but this disconnect between scrutiny of one area of special needs legislation and another seems to open up the possibility another yawning chasm for young people with special needs to disappear into.
Mark the here and now how do I get my son out of it? What do I do – say to the judge you made a balls up? Martin has lost seven years of his life out there. Lord Hardie was right – but what do all we parents do ask for compensation? What will the committee do about tomorrow and next week? I had Martin home for 3 hours yesterday, allowed once every 6 WEEKS. I am desperate
I am so pleased about the report.
This is a big question, but I am honestly confused.
There are LD people who need supervised care for their own safety. They may not be able to act in ways which keep them safe or others safe either all the time or if they’re upset etc.
You would hope that with the right sort of help most disturbed behaviors that put individuals at risk could be sorted but not all of them can.Problem is that the help available is so terrible that far from helping the behaviors it seems to make them worse and an insane cycle kicks off.
The care might have to include restraining them against their will. If my son wants to go out at 3am with no plans no money, no ablity to keep himself safe,furious and hitting out you’d hope he could be talked around or disracted, but if not ,the door needs to be closed even if he really wants it open. When he’s legally of age, if I don’t open the door on demand I am breaking his human rights unless I make out a case, I suppose, that he hasn’t the capacity to care for himself at that time. And its right that I would need to do so.
The care for those whose behavior puts them at risk may not be able to be provided by family members for a whole bunch of reasons. We may be overwhelmed,elderly, frail, drunk insane.Somebody needs to judge., but somone needs to acknowlege that the terrible alternatives to care at home mean that usually parents will endure anything .
With the criminal closure of day/respite centres its less not more possible to live with someone very demanding in this way. You are together more. Their life has much less interest.You have so much less help.
What has gone wrong? That’s my question. The report says things have, but I don’t understand how things have drifted. I don’t think it works for us to suggest that there’s never a case for a person to have to be restrained for their own safety or that sometimes it isn’t best for them to stay at home and the report states in the first section that the original aims were good. How did things drift? Terrible training? Closure of support services so DOLs used to plug the gap?Any ideas?
I think the very term “Deprivtion of Liberty” is Victorian with draconian overtones and should be replaced by a more integrated system where parents/relatives.friends etc have more input into the wellbeing of our relative (the person with learning difficulties) and a different title! I think better training is the key to it all. My relative suffered from the opposite interpretation of the MCA 2005 to Steven by someone who did not interpret the act properly. I feel that social services have far too much power for their level of abilities, training, knowledge etc. They need to communicate, consult, investigate the whole situation surrounding the person (including the family and friends) and use evidence rather than opinions to make decisions. Above all they need common sense which often they seem to lack…..
I come into this debate at a lower? experience level, but it is one that is reflected here in every thing that Mark and the other commentators here saying? Our sons and daughters are measured constantly by people who may or may not be up to job……. There are a myriad of reasons why our sons and daughters (and us) are being measured all the time..some of this may be to help us…others may be rocky risk judgements….or simply just to cut costs? Some ‘measurers’ are paid strangers, who pop in from somewhere else, for a day/week/month or so, on a contract to do a job lot, for less? Others are appointed as LA ‘capacity’ managers, and their job carries targets; eg the whole lot done for less and in time?..big tick, good job.
This focus on measuring risk, number and cost, (in our experience) is also set in a context where the expectation is that more people have suddenly and by a miracle, become less learning disabled and can now be rated/ allocated ‘nothing’ or reduced support. ‘Nothing support’, is an expression of my son’s, as some of his learning disabled friends/peers, now rated ‘up’ in capacity, get,lower or, . ‘nothing’ support. .
The potential for ineptitude (at best) in the ‘measurers’, when translated across into the only too often potty politically correct ‘cared for’ world, is supremely dangerous. It is a wonky world where families are always LESS; eg less caring, less intelligent, less clued up, less capable, less experienced ….and at the same time, MORE: eg more troublesome/awkward, repressive, dangerous etc etc …. than the newest baby professional or zero hour support worker.
Until the capacity of the people who measure us and ours, is brought into line with these new and wonderfully intelligent recommendations,.us and ours will continue to plod wearily on …….using up our lives…. begging (always very respectfully) … to be seen?
Weary mother, what stood out for me was that Mark was going to meetings ostensibly to discuss ABC when it was clear all had been decided beforehand and the meeting was only to tick the box, mollify him and get him to go away. He wasn’t paraniod, he was right. Who of us hasn’t had that experience? Meetings with parents are being used to give the illusion of power. We mustn’t buy it.
And you are so right that services are fragmented and contracted out to private providers who are there to make money. That’s all they’re about. Its absurd to suggest the providers will provide a great service because they want the contract. They will offer a cheap service and the LA’s will jump at it. Service turns out to be no good? Well, its fragmented, so good luck complaining.
The constant measuring is used instead of intelligent and skilled management. Its like they have one easy part of behavior management-the monitoring sheets. That’s cheap. Well trained, qualified clinicians who can collect the information, talk to family, make skilled time limited plans which stand a good chance of helping with difficult/dangerous behavior…well, they’re expensive. But we have some very poorly trained people and a printer. Just fill out the sheets, we have lots.
In our Borough, the problem is more that the services will do anything, anything rather than hear about risk when LD children/young people are at home. Knowing about risk means responsibility. They never follow up any concerns about risk, never do the most basic risk assessment (“Do you feel safe over the weekend? Tonight? Is your child safe?”).
Instead they:
Don’t do crisis plans. Don’t tell families what the options would be, should things get too dangerous, or let parents have a look at what’s avaliable beforehand.Instead, offer parenting courses and advice sheets. If parents say they don’t think these will help, suggest they are arrogant and difficult (“None of us are perfect parents!”)
When the parents give up and go away never follow up. If something bad happens go on TV looking soulful and concerned while making it clear you run a superb service which enables the disabled to feel empowered blah blah. Say lessons will be learned. Await promotion.
Thank god for Mark Neary that is all I can say. Without his determination and drive none of these terrible practices would be in the public domain.
My own son has never been subjected to these awful life experiences of being parted from his family and I can only imagine the stress that he and Steven went through. Too awful to contemplate. I do believe that quality of life for our loved ones is always overlooked when ‘the professionals’ are involved in their lives. No one seems to want to listen when carers say ‘I’d rather you do this’ or ‘that is not going to work for my son/daughter’ and ‘He/she will be stressed if you do this’.
At the moment my 42 year old son’s quality of life is nil. His medication for epilepsy is causing him to have psychotic experiences. He hallucinates, he is fearful, he is crying and it is breaking us up just looking at him. We have been recently slowly taking down his Tegretol because he has not had a seizure for five years. He also takes Lamotrigine. These drugs are also used for people with Bipolar. We finally got him off Tegretol in January and we feel we should have been then lowering the dose of Lamotrigine because the plasma levels are raised in Lam when tegretol is discontinued. His psychatrist thinks differently. We believe my son was showing signs of Lamotrine toxicity. The upshot of this is he then reintroduced tegretol to stop his distress and he did get better, he was over happy and was talking constantly about his school days and the friends from his day centre. Unfortunately that euphoria only lasted for a month and now he is back down again and he is imagining that his friends from his old day centre have died. It is heartbreaking to see him in so much distress. We want him to have less medication and I have this gut feeling that Lamotrigine is the culprit but the medics are concerned he will have a seizure. I believe that concentrating only on the treatment of the seizures, which only took a small proportion of his life, does not address the constant impact this constant lack of any quality in his life. I want my happy son back.
Sally, spot on.
And ……plus all the other daft careless crass stupidities and what MUST be at times, deliberate obstacles, to simply us helping them to help us and ours…….
MEETINGS!!!! In my long professional Public life, they are, in the main,merely status validation and bonding sessions for teams. Businesses who have to find and keep their customers and use their own cash in order to stay afloat – talk with and to their customers? Try that with a LA or care agency of any size? My son has grown old being asked his wants and needs and likes, over and over and over ad.. etc….job done, and bin the answers. Carers forums…….tick, job done?
Mark’s blog and his open courage, gives us a voice. We are on the other hand are as careful as we can be, just to remain anonymous. But how many customers will get a new replacement chair, get their roof re-fixed by saying you will have to work out who we are and where we live, to help us? But us going afraid’ly and anonymously all round the houses – and in our cases……. definitely no names no pack drill – for fear of repercussions on our sons and daughters; surely this is a bright lights flashing on and off cymbals banging LOUDLY, example of just how BONKERS, all these personalisation ‘choice etc’ word speak, dreamworld, promises are….?
And if we told tales and publicly named the people who have shrunk so many lives and reduced happiness and health over and over.. the long list would take a while ..but…OH…… I have gone all faint at the thought! And I am going to look out the window…just in case? Should not be like this?
No matter how excellent and intelligently sensible these recommendations are, it only takes one silly or inexperienced and even worse, a very very certain, ‘jobsworth’ ………..to scupper the lot?
It is shocking that carers are afraid to speak out or be identified in case their loved ones get badly treated.
When government fears the people, that is liberty. When the people fears the government that is tyranny. – Thomas Jefferson. That goes for local government too.
I was thinking that the problem for us all is surely this: Every public service such as health have workers with case loads-the people on the books for whom they are at that time responsible. OK. The workers can’t keep on taking more and more people, and the managers don’t want to keep hiring more and more staff.Every service wants to run on a model of throughput-so you do what you do, and the person is discharged off your case load.
Problem with LD is people, despite all the talk of learning independence and being empowered-don’t recover from having LD! They will need help and care for the rest of their lives. This is inconvenient. They clog up case lists. A model of brief “targeted” intervention and discharge is creeping into services for people with all conditions, including developmental ones like LD.. Nobody wants to be stuck with a sack which just fills and fills, with people who will be attached to your service until they die.Every service is under pressure to discharge as many as possible and get the caseloads down.
Services are dealing with this by-rewriting their mission statements so they become a brief contact service. The idea is you are discharged. All of us indeed have had the experience of our LD person being discharged at the drop of a hat and often without us being told-until we wonder where the service has got to, ring up and discover that yet again the case has been closed.!
They dump responsibilities on the LD person and their families-they remove anything about responsibility from their remits. They used groovy expressions like empowerment/independence/targeted.There is nowhere for the LD person to go long term. . Look at any local service anywhere. How many suggest that the LD people are with them for the rest of their lives?
This leads to things like Assessment centres being used as dumping grounds. If there’s nothing locally to help long term, there they stay. And there’s very little long term anything.
The danger for us, is that we can be led by the nose by cries of independence and empowerment to not spot the flaw. Please value and listen the LD person, but lets not get into a fantasy that he/she will recover, will learn to never need a service again-or to masterfully reconect with services whenever he/she feels the need.
Spot on again Sally and Pauline
I am old and creaking noisily. Till two weeks ago I advocated for my independent living multiply handicapped son, and for reason of age and creaks an advocate was appointed.
How useful (rhetoric question) is an advocate who is always a stranger, to our son and daughter? How useful is an advocate who closes the case after each contact, and potentially a new one turns up ? (eventually). How useful is an advocate who has no interest in building a relationship with our sons and daughters (heaven forfend with their family!) and who turns off the relationship till the next agreed ting pops in from the LA’s cash machine. All this of course, assuming the advocate knows what they are doing and or has any experience at all. All this assuming that our middle -aged sons and daughters will put their lives and trust where it has been failed so often before.
This is all so scary I have decided to live forever!
Its so annoying because what’s needed is so basic! Someone with LD needs an identified person who will be in their lives long term. Of course workers will leave-but part of their job is to flag up the transfer and make it as smooth and clear as possible. (“Next week I’ll bring Fred your new worker with me to meet you and we’ll all have a chat etc etc”)
The worker needs to meet very regularly and review how things are going. Maybe there’s nothing to do, or a big problem or a few little bits that need a call or two.Just a regular social call to check. Takes about 15 minutes. In the days of day centers this was easily done.One worker could come by and help out several LD people one after the other-no appointments no waiting, no lost time.
The LD person should also feel able to call/ask for this person to help if there’s anything bothering them. They shouldn’t need top look up services etc, just to be able to ask for the one worker who is there to help. If the LD person isn’t able to communicate this, even more reason for the LD person to have regular frequent scheduled visits from their worker.
Finally (If I ruled the World) it should be an offense punishable by a lengthy jail term for any person with LD to be dumped from a case list/left without a worker/left unvisited by their worker/have regular visits replaced by an inadequate complicated impersonal system.
It should also be punishable by death (!) for any worker/manager to allow someone with LD to “fall though the cracks”. Its easy to do. Don’t replace a worker, or change the system, have a big dusty pile of files with new ones coming in, suggest that as you “haven’t heard from” the old cases they have got better. Put the old files away.Forget them.
Worst possible punishment reserved for anybody at all who says lessons will be learned!
What is needed is so simple. It doesn’t cost all that much.
Weary mother, if you discover the fountain of eternal youth, let us all know!
I love you three. My blog has become like the snug in the Rovers and you’re the blog’s very own Ena, Minnie and Martha. It doesn’t matter what I post – you fly with it and take it off in all sorts of directions. Don’t stop, Whatever you do – dont stop.
Mine’s a sweet sherry!! xx
Nope. If you’re in the Love Belief and Balls Rovers, you’ll have a milk stout
Hmmm-A paradoxical injunction? (She said suspiciously.) If so, sorry to go on and on-its like Shaw said, a person with a grievance always digresses. And any, any good idea or victory in the land of disability needs to be examined for loopholes-how could anything in this bite us in the backside further down the path?
If you meant it-crisps are very welcome, young man.
OK..I will drink anything for my seat in the Mark and Steven Neary Rovers
Make mine a babycham (do they still serve them?) and I will take this thread in another direction.
Mencap cannot ask for FOI’s across the country’s NHS Mental Health services to find if there has been any rise in referrals to their services. It will be too expensive. The rise in the referrals in my borough is because GP’s were starting to take the mental health of people with LD more seriously and are referring them more. That is a good thing. Do anyone buy that? No nor do I. The fact that my FOI covered the years from 2006 to 2011 . The years when the closures of the day centres were finalised in my borough.
Mencap played a big role in The White Paper ‘Valuing People’ and although for some people the closure of the day centres meant that they were able to find jobs and do other things, many people loved and enjoyed the activities in the day centres and made friends who were constant in their lives. The staff might change but usually their friends were constant. Carers also got some welcome respite. There is no excuse for leaving one group of LD people in second class services. For Mencap to be involved in changing the day services of people LD and not be able to be their ‘critical friends’ when they do not like the changes is abandonment. Everyone should have their choices met.
Mark It is my round now, what are you having?
I really hope you get that FOI.
This really is the issue, isn’t it. Closure of Day Centres and similar in favor of personalisation. Mark has written about it so often. To justify the closures they focus on a group of capable, pretty high functioning disabled individuals who can fill out the forms and go get jobs, water ski etc etc. And it’s terrific that people who can lead an independent lives etc etc are given that.
But the majority -that’s, the majority!-of people in Day Centres, sheltered employment and so on are not like that. They don’t like being cast adrift, nothing to do, trudging about in shopping malls with a bored worker . There’s nothing to look forward to (our now closed Day centre always had something nice coming up everybody looked forward to (seaside outing/Easter party). They are at home a lot-even the most determined parent finds that the personal budget however filled in doesn’t cover the hours the Day Centre did.
A nice cheery place to visit, known workers (who are trained and under the eye of all) group activities, excursions, all in the one place .That’s what they want.
We have locally a fantastic charity which employs LD perple with a good staffing of jolly, warm and capable workers. They make cards and sell them in their own little shop. Everybody has a job to do based on their abilities, nobody is left out. They have parties, singalongs, excursions… Its their own shop. They are at work. It is in fact a cross between a Day Centre and a sheltered workshop.
Now, why am I afraid to even mention it in passing? I am afraid that some twerp from the Local Authority will figure it out and find a reason to cut any funding it gets. All the people happliy at the shop will then be sitting at home hoping the bored, minimum wage worker shows up that moring so they can trudge around the Mall.Is that paraniod?
Sally I agree entirely with what you say. I have been arguing that point since 2003 when plans to close our day centres was first introduced in my borough under the white Paper ‘Valuing People’
Sally I have had an FOI from our local Foundation hospital since 2012. The numbers of LD people needing psychological input had risen very significantly from 2006 to 2011. I have touted the results around to everybody I thought should be concerned. Even the Dept.of Health. Nobody wants to take responsibility for it. I have seen with my own eyes the decline in some of the people who have lost their services. They hurt, and they complain the only way their know how and that is by being angry and disruptive. Then comes the label of ‘challenging behaviour’. Bring on the psychiatrists, the social care managers and the medication. They all are trying to cure the symptoms instead of addressing the cause. We know the cause. We the parents/carers know the cause. They want their quality of life back.
Re impact of removal of day care and other support:
As I have already commented: my late middle- aged (has Down’s,is partially sighted wheelchair using and serious communication difficulties and lives in his HA flat.) son had his day care place removed three years ago. His peers/friends without family or friends, were all were booted out. As I have commented already, I have challenged this and the spiteful reduction of all his care to three hours total weekly, (they then took another hour off – so two hours),with absolutely ‘nothing’ else support). The day care removal was suspended. For three years these support withdrawals have hung over him like a guillotine. And I have dealt with every kind of crises on crises every day.
But with the support of an excellent young solicitor and an extraordinarily brave young care manager, things have very slowly been reasonably, but not fully, resolved.
On hearing his day care place is safe (for now?) my son who stands only with difficulty raised himself up and punched the air, his face was red and contorted with feeling. His friends all have gone. But while we together have struggled for these years every day, all normal (for us) his life was suspended. It was my son who has sat with his head under the axe. Pauline, it is a no brainer that very vulnerable people have been further damaged by these brutal cuts.
He must have been terrified every day,and every time something bad happened to one of his peers, he must have felt it was to be him next. This is abject cruelty.
When I go to the park with my son I see an older man, who used to go to the same centre, he is there every day. – rain or shine. He greets us and my son greets him by name. He leans on a zimmer frame. He is visibly learning disabled scruffy and shabby. Young mothers avoid him as he watches their children play. He is a gentle man. People in general avoid him His parents would weep. .
Oh, my God ! “Valuing people!” Mark, Mark, put that phrase in Carespeak pronto!!! The evil in the contrast between the actions-closure of sources of friends, happiness, stability-and the stated aim.
Mark,when you next give a talk to Disability services, as well as leading them out of their warm comfy meeting room to freeze outside in a courtyard/[perch uncomfortably in a coffee shop (“I am helping you access the community”) ,keep taking things away as you talk: desks, chairs,supplies, lighting, while telling them how much you value them. If they get irritable/anxious, start filling out behavior charts with them.Don’t forget the DOL.
If you fragment services there is no responsibility. Besides, if we show that people with LD are a great deal less happy, more depressed, and so on, some toady from the Local Services will be very concerned and say that they can’t think how that happened but its just an abberation, the overall idea is great.
I want someone pushing closures to put themselves on the line. Lets agree on what would be clear markers of success (LD people demonstrating they are happier ..) and failure (an increase in depression/acting out). OK. Mr Valuing People is very sure that closures will lead to greater happiness. I want him legally bound that if his scheme fails he will at once:
reopen the Day centres
return his salary
throw himself off Waterloo Bridge.(Just an idea).
[…] to an advocate because they have to be appointed by the same council that is holding them (see Mark Neary’s blog for more on this […]
Hi Mark
I wonder if you are able to help me out at all. My uncle and his wife are currently going through almost exactly what you went through in 2010. They have a 22 year old son who is on the autistic spectrum, and over a year ago he was taken away from them and sectioned under the mental health act. He was kept in an adult mental health institution for some time, before being moved to what I believe must be a behavioural unit of some sort. He is currently only allowed to come and visit them for a few hours a week with a social worker, and they are fighting to try and get their son home. The social services who say they are working in their son’s ‘best interests’ want to put him into an independent living accommodation or into specialist home for autistic people, but none of the options they are offering appear to be suitable for their son who isn’t severely autistic. They also do not seem to be offering a sufficient care package for him. They have had their son assessed under the mental capacity act and the authorities are saying that he does not have capacity to decide where he wants to live, despite saying 20 times a day that he wants to go home. My Uncle and Aunt are currently trying to get an independent mental capacity assessment done. I confess to not understanding the situation fully, but I do know that they are 2 ordinary, simple folk who love their son very much but who are completely overwhelmed by the bureacracy and complexities of the legal system and who are now in a position where they may have to sell their house in order to pay £20,000 for a solicitor to try and help them win their son back. They are being treated appallingly by Ealing Council and just don’t know where to turn. Is there any help or advice you can give us?
Andrea
Hi Andrea. If the LA are holding your son under the mental capacity act, they have to start the deprivation of liberty safeguards process. Then, 1 of 2 things will happen: either the LA decide not to authorise a DoL and he can come home. Or, if a DoL is authorised, you can challenge it through the court. The LA should appoint your aunt or uncle as a “relevant person representative” and that entitles both your cousin and however is appointed as the RPR to legal aid. Here is a link to our court judgement – http://www.bailii.org/ew/cases/EWHC/COP/2011/1377.html Have a read so you are up to speed on the law and next time you meet with Ealing council perhaps you can be cheeky and say “you don’t want to get the same damming publicity that Hillingdon got do you”. Keep in touch and if there is anything else I can do, just ask. Mark
hi mark andrea told you about our case our son in an assessment unit on dols with the council claiming he has no capacity. he was coming home at weekends without a care package and because of one incident it was stopped. .unlike you we have had no help from the council but are asking for them to send our son home with a care package.we are at a late stage and still looking for a solicitor and are waiting for an independent assessment of mental capacity.how can we be sure that we are heard and listened to when we express our views on what we consider to be in our sons best interest?Our son goes to college and returns to the unit at night we cant take him to the cinema or take him anywhere else and he is left with nothing to do at the unit.He is unhappy there and wants to be home with his Mum and Dad.Please advise.