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Modern Judging

January 13, 2017

No families come under the microscope of the State more than those families with a learning disabled member. It starts at birth but really ratchets up when the disabled person reaches adulthood. Whole swathes of professionals suddenly appear on the person’s 18th birthday with big plans of what your son or daughter’s future should look like. Your role in their life will come under very close scrutiny and all your values, beliefs and traditions will be questioned.

Nowhere does this reveal itself more than in the thorny issue of “independence”. And what this usually means to the professional is independence from the family. I’m sure it is not the case all over but there is lots of anecdotal evidence to show that for many professionals, they believe this should and must happen for the learning disabled person between 16 and 18. The very first time we met Whistler’s Mother she asked when we saw Steven living independently from us. He was not quite 17 at the time. She then spent the next 4 years trying to turn her belief into a reality for him.

I’ve been reading the book, The Modern Judge by Sir Mark Hedley. It’s a fantastic little book, no more than 90 pages but packed with wisdom, humanity, humility and humour. I heartily recommend it. In the book, he tries to tackle the subject of State intervention around independence & quotes from one of his own cases, In The Matter of B (a child) (2013) UKSC 33:

“It follows inexorably…That society must be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent. It follows too that children will inevitably have both very different experiences of parenting and very unequal consequences flowing from it. It means that some children will suffer disadvantage whilst others will flourish. These are consequences of our fallible humanity and it is not the provenance of the state to spare all children all the consequences of defective parenting. In any case, it simply could not be done….”

Adult services are, despite the MCA, person centred ideals, inherently paternalistic and risk averse. It is hard for adult services to follow the principles Hedley talks about. And it is made significantly harder when services have fixed ideas on issues like, the right time for a learning disabled person to be and live independently of their family.

There are so many complexities to the issue that having a template date for independence is nonsense. I’m watching Steven wrestle with these complexities at the moment. Approaching 27, he is clearly experimenting with his independence. For a couple of months I have been with him for 2 hours on Tuesday, 5 hours on Thursday and the weekend. The rest of the time he doesn’t want me there. He doesn’t want the support workers around either and keeps sending them off to his room. In truth, he hasn’t needed me for practical day to day stuff for ages. He does still want me around though for an emotional need that only I can meet. Just before I left yesterday, he called me back to go through a picture in the photo album with him. He wanted to share the whole story of everyone in the photo, how they were related to each other and what were the videos on the shelf in the background! Nobody else but me could have done that with him because nobody else had been around for those original memories. If that is a dependency, it is a dependency we all share for all of our lives. Think of the huge psychological boost you receive when you meet up with an old friend and share a trip down memory lane. Learning disabled people have that need too.

One of the 7 Days of Action families are going through something similar. The dude is 19 and has been in an ATU for four years. The Responsible Clinician is ready to discharge him but only to a supported living placement. He believes the family won’t enable his independence if he moves back home. He may be right but how does his stance fit in with the Hedley quote? I find it impossible to discuss these issues on social media. Nowadays, everybody is encouraged to have an opinion on everything. Advice is given, even when it’s not been requested. There is no space for complexity at all. In this case, I believe that only one person is “right” and that is the dude himself. Is the RC right to decide when the dude should be independent? Is the mother right? In its starkest terms, our independence has nothing to do with anyone else. If it is forced, it is likely to backfire terribly and lead to feelings of rejection and abandonment. If it is refused and the person is forced to remain dependent longer than they wish, that will backfire too and lead to feelings of resentment and bitterness.

The time is right when the time is right. It can’t be forced early or postponed until later. It will be driven by the person themselves, no matter how much they are deemed to lack capacity. As Hedley says, lives, especially family lives are messy but to engineer something that isn’t natural for the learning disabled person, or anyone for that matter, is fatal.

Steven is struggling and will continue to struggle as he teaches himself about his independence. He will cock up; he will get confused; he will get upset. But if I try and step in to “make it alright”, I will do more harm than good. He has to work with and through his own complexity.

Just like the dude in the ATU. If the experts and adults allow him to.

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30 Comments
  1. Thanks for the thoughtful blog post Mark. The members of he-special.org.uk had a discussion about this last year after reading an article from teamaroundthechild.com on the difference between autonomy and independence. We all agreed that humans are generally dependent on each other, what we really want for our grown-up children is autonomy so that they can make their own decisions, be that to live separately from their family or with their family. I was going to link to it but the Team Around the Child website seems to be down right now.

    At the Gloucestershire CCG AGM they showed a video of how they approach the problem and it looked really good. It was about a young man who was living in the family home but with a lot of support in addition to the family. I wish all areas were like this. Unfortunately the video doesn’t seem to be in the public domaine. Apparently in Gloucestershire they only had 6 people in units and they were considered to be the exception and they were working hard to get them out.

  2. It isn’t just people with LD and their families who come under the microscope – those with other disabilities experience the same thing. I remember the mother of a boy with cancer telling me that SS and housing turned up unannounced as soon as he was sixteen – they had identified a flat for him to move into – without even asking him if this was what he wanted! At that time, he was so ill that moving out was never going to be an option – but hey they had ticked a box! Any severe physical disability will put you and your family under the microscope and EVERY aspect of your life and your choices will be questioned – though I think they stop short of checking out the colour of your knickers in the knicker draw!

    Who defines independence? Is independence defined according to who you spend time with? I think it is. Officialdom decides that if you do things with your family you are not idnependent – but if you do things with care workers you are independent. They couldn’t be more wrong. Time with family enables choice and getting on with your life in the way you want to – time with care workers – ho hum – sitting in the costa hub being ignored, watching what the care worlkers want on TV, having your whole life restricted by spurious rules and regualtions – especially around safety. The provide will put their care workers before the client at all times and if they don’t want to risk your vare workers stepping in a puddle then you won’t be allowed to leave your house!

  3. judyb permalink

    Many societies don ‘t expect people to ever live anywhere other than with extended family……….seems that social workers are often committed to a Western, capitalist post 1950 view of how people should live. Working out really well with an ageing population

    • I was going to write something about the cultural considerations but that would have made the post too long. Another day perhaps.

  4. antlerboy permalink

    “…including the eccentric, the barely adequate and the inconsistent..”

    Too right! I have posted a comment before to just say thank you for blogging and connecting the world of jargon and service and (well-meaning) assumptions that I and so many live in, with the world of human life that I and all those other people *also* live in. I know it will get obnoxious if I keep doing so, but thank you – you’re providing a valuable service.

    It seems really clear that the only way we will be able to have a liveable society in the future is to rely much more on our families, friends, communities, and colleagues – each other. And if this is going to be meaningful in any way beyond just being an excuse for cuts, we will have to start pushing the jargon and the practice back into the world of normal human life.

    In particular, we have to take seriously that a focus on ‘outcomes’ means the outcomes that people, families and communities want for themselves (or just: will achieve for themselves), whether or not we approve of, respect, or even like what they want for themselves. That needs a lot of things to change, including more people willing to stand up and say ‘this is what I want’ or just ‘this is how we live’ – and, of course, more people to listen.

    • Yes, I don’t want to keep writing either (!) but I’ve thought about this a lot.
      My son has been thrown into a totally western or maybe non-descript model of life, that doesn’t suit us.
      I feel I’ve lost my culture, as well as him.
      We’re part of two complementary cultures, and we need both – ours is very strong – simple living and proverbs and spirituality and praising God for every good day that passes, working selflessly and accepting all different others as equals, meditating for wellbeing – as well as being like everybody else!
      It’s like double discrimination, but disability is treated worse than ethnic background, I feel.

      We have a rich culture – not knocking western culture at all, as that’s so good (or was) in many ways, but not as free as it claims, not for the disabled.
      We have lifetime relationships and involvement in a ‘care’ sense, not up to 18+ to fit the model that isn’t ours. We don’t talk about ‘care’, but parental duty.
      I know all ‘ethnic majority’ people are different too.

      My son loves hearing our language, listening to our prayers, being hugged – as we do that a lot – we’re expressive people, not reserved, we celebrate and mourn for long periods – you know what I mean. A bit like the Red Indians in Dancing with wolves.
      He is starved of hearing certain words at night and morning, and having the food he grew up with.
      I can’t accept this and I snatch him away from the care placement almost every day and we listen to mantras that are medicine to us.

  5. WENDY M WILSON permalink

    Mark you seem to have the ability to put into words what we all feel ……………..Thank you

  6. simone aspis permalink

    WOW
    witchescovensandhellfire what a sweeping generalisation about the presumption that families support independence choice and control whilst being a supported by a care worker does not. I know of many disabled people (including those with LDs) who would not agree with you. And have found that having PAs allowed disabled people to have independence because they did as requested. I know of disabled peoples lives that have been transformed by having PAs and are doing lots of great things. And where DP have felt they had no degree of independence with family members because they had control over resources, living space etc etc. What you have described is poor care provided by poor care workers. Please do not through the baby out with the bathwater.

    • Woah. I don’t think my post makes any of those generalisations. My post is about the scrutiny and judgments that the families with a person with LD come under. That simply doesn’t happen in other families. The post is saying that the disabled person should make the decision about the independence; not the state and not their family.

      • weary mother permalink

        …plus trust?

        People move forward in independence and anything else – where they are valued and feel valued. And where they can trust.

        Families learn to trust the State and it’s foot soldiers – or not. Not ‘letting go’ etc, may in reality be a symptom of learning. Learning from painful experience(s) that the powerful State, plus commissioned agencies and people … can fail – may have failed – and can cause fear, pain and damage – again… and again.

        It may be that family see and hear son or daughter happy and increasingly independent, within the family – whatever form that takes. And they seek to protect this.

    • Simone, you’re talking about PAs of people who can say what they want and have a varied life determined by themselves. They would vocalise loudly and get a better deal.
      Others have more complex needs, are easily neglected and no one cares to give them a stimulating life, leading to illness and misery, and probably early deaths.
      Mark’s son seems more able than many, and the focus on wider scrutiny of families makes me wonder who on earth is anyone (officials are just ordinary people) to judge another’s family, or scrutinise.

      Yes, let the person decide. That person is an equal. Whatever they decide, and they don’t have to explain anything to any one.

  7. I agree with you Mark that the scrutiny and judgements that families with children and adults with LD or any other disability doesn’t happen with other families. in our village most families have their adult children living with them. When they don’t they are often living with their partner’s families. These aren’t just the farming families that traditionally have three generations living under the same roof, but ordinary families too. I have been very upfront with anyone that comes into our lives that might suggest that my son needs more ‘independence’ by moving out. I ask them if they will also help the other young people in the village that would like to move away from their family home but can’t afford it.

    There is definitely a double standard.

  8. simone aspis permalink

    Mark it was not your posting – it was one of the contributors postings who had stated People with LDs independence can always only be promoted by parents and taken away by social care workers – that is one big generalisation – I do not think witchescovensandhellfire would be saying that the Social care workers working with Stephen do not promote his independence – so its not true that people with lDs can not have their independence promoted by great PAs. Me I fought for people with LDs to benefit from direct payments on behalf of People 1st (here I go again praising our fab user-lead orgs!) Stephen and others would not have benefited from Direct Payments, Personal Budgets without the sterning work done by People 1st – sure I have explained our work elsewhere – People with LDs were not included in the direct payments legislation back in 1995 and then we had a massive row with Department for Health (or was it DWP – can not remember) over the “able and willing” guidance which included the test that disabled people must satisfy in order to get a direct payment – just like what Stephen has got. We won that battle!

  9. Anna permalink

    Love this post! I always say having a disabled child is like walking through customs. You know you have nothing to declare or illegal but your are always on tenterhooks and expecting to have your bag searched anyway. Balance of power big time!

  10. In my experience, Social Services fail to record correct information in records, but note their own ‘opinions’ – which then become translated into ‘facts’. Social Services keep all information secret so they do not need to justify information & opinions recorded, and cannot therefore be held accountable.
    The Power of Information initiative was published by the Government in May 2012, which committed to ensuring that a person is entitled to have online access to their own health and social care records and information – which of course they as individuals are entitled to share with whomsoever they chose. GPs now provide online access for all individuals to their own records – but why not for Social Care!
    Individuals should be empowered by easy online access to their information

    • Anyone receiving social services, can apply for a subject access revealing anything recorded about them by SS .

      But this does not include an 18 year old OR OVER, who is incapable or suspected ,until they sign a Lasting Power of attorney in the applicant’s favour, but this LPA IS likely to be voided by COP, if autistic/LD on restropective grounds they were incapable on signing.

      Or, you are that persons guardian, again difficult to get and maintain ,if family member, as will be deemed a conflict on spurious neglect abuse grounds.

      You are right it, is impossible to get records changed, and even if they say they are changed, you will find that all experts, GPs, lawyers, carers interveners will be working off the incorrect facts.

      They work off paper and agenda not the truth which is disastrous for care and the family.

      This is because, all share all information on a MASH, Multi Agency Safeguarding Hub computer programme and they have secret communications. And £433 million has just been given to LAs for safeguarding.

      Google finola moss and read all about it.

  11. The number of non disabled young adults living with their parents, is at an all time high to now a quarter of 26 years olds.

    Yet, the nunber of learning disabled is practically non existent, due to the LAs policy to remove to residential care ( insturtions) at 18, in the guise of ‘independent’, now callled ‘community living’. So highly discriminatory .

    In such places for life, they are used as a commodity for ever more profitable processing.

    Every decision is made for them, they are subject to 24/7 surveillance, so much so, a record number of deprivation of liberty orders have been issued by the court of protection. DOLs in the community are now increasing.

    This is imprisonment not independence that’s why DOLs are needed.

    The disabled cannot see who they want to, or go to visit/ stay with their parents if they want, or live with those they want, or do anything that is not decided for them.

    If they are upset by this, then they are forcefully medicated, 78% are, often without a mental illness see Thomas Rawnsley’s independence.

    https://finolamoss.wordpress.com/2015/04/27/independent-living-disabled-penned-for-profit/

    in 2010/11, the largest component of local authority expenditure was on private, commissioned by LA, often enforced, residential care placements (1.55 billion) for people with learning disabilities, followed by supported and other accommodation (83 million), and nursing care (75 million).

    I do not have the present figures, but these will be much higher.

    The LD/ autistic are a goldmine, this is not about cost cutting.

    Many now receive no support in their family home, and Personal Budgets, if given are limited to £8.50 an hour, that would be a lot of support for the average £4,000 a week paid to private providers, that is why so much profit, is being made, most providers are now venture capital backed. And any day centres are now those of independent/ community living providers, and all feed into the industry, 433 million on safeguarding but only the parents are watched .

    And neither parents or the disabled have any rights.

    • Shirley Buckley permalink

      Finola once again you have all the facts. It is the biggest scam ever. Martin – £2,400 a week to be held under a deprivationof liberty that is illegal, based on his lack of capacity.

      • Its money for old rope particularly as there is no accountability, a captive consumer and a guaranteed government commissioner, and ever increasing income. and total control of service with only those that commissioned its oversight.

        IS it at wonder therefore successive governments have conspired to provide private profit with such a bonanza as the public health and welfare services.

        And soon legal, courts, prisons
        probation already.

        We Britons certainly are being made slaves and paying billions for the privilege.

        Thanks Shirley for y o ur comment .

        I hope you and Martin

    • Pauline Thomas permalink

      Finola I visited the 7 days of Action website and was appalled at the way Thomas Rawnsley had been over medicated. Why was he medicated at all? Was it to help him or his support workers. (I use the word support very loosely). He had been stripped of any dignity. His poor mother. What sort of human being does this to another human being? Is this what you can expect when your loved one is imprisoned in one of these places? Was Thomas being taught how to be independent? I thought these places were there to make people better, not to kill them.

      • As you have seen from my blog, poly pharmacy on the LD/ASD is the norm, and there is no check on the amount of drugs used, just a tick box from psychiatrists employed by the monopoly care home service providers, like Thomas’ Cambian, who bought Lifeways. And on paper announced inspection by CQC, which took 9 months even after Thomas death and his Mum previous complaints to them.

        In addition, the provider can use Covert Medication, even if not in Care Plan although it should be.

        And, in 2013 an FOIA Notice revealed 30 patients were tasered by the police, who can be called in by care homes/ hospitals.

        The dangers are even greater now, as all mental health services are private, so not subject to FOIA Notices, and can hide behind commercial confidentiality even from government.

        We must also remember, that up to £12, 000 a week can be charged for mental hospital beds including those owned by community living providers like Cambian.

        We must also remember that Thomas, and all those removed to ‘community living’, formerly Independent’, can be placed in their hospitals at anytime, and forcefully medicated by staff employed by a for profit, increasingly venture capital backed care provider.

        Let us also remember parents need not be informed of what is happening to their child and can, and are being excluded even from visits, in their child’s ‘best interests’.

        Let us also remember next week is the second anniversary of Thomas death and still no answers.

    • conrad wells permalink

      As a support worker seeing the dudes I’ve been working with move into the “adult” world the stress and the fight they and their families have for the support and care they want not what is convenient for the local authority is the norm. Two years ago the fight one mother had to get her son into a place he wanted to go to . He had visited the place loved it, loved the other guys there and was quiet and in lovely place outside the city for the peace he wanted. It was a home not a placement. The local authority fought it all the way not close enough to them they wanted him to go deep into the heart of the city next to main road and busy railway junction, he hated noise and after his “placement” visit. Sorry for the jargon he was visibly upset for the week after when he came back. The place he wanted to go after that visit, for two weeks he was happy smiling and telling everybody here he was near the sea and woods and beaming. Those days made my job worth it. In the end mum got her local MP and solicitor involved. Now in a place he wants and loves.

      • Dear Conrad,
        So good to hear from a good support worker. People like you are precious.

  12. Sorry Shirley, I thought this was on my blog and MY reply disappeared.

    TO finish off. I hope you are both OK, and see more of each other in 2017

    Best Wishes,
    Finola

    • Shirley Buckley permalink

      Martin’s RPR informs me that she is taking Martin’s case back to the CoP very soon. Heaven help us

      • What’s very soon ?.

        And did she say why, and who pays for her RPR services.

      • best wishes Shirley that this action brings about significant good changes for Martin and your family.

  13. Shirley Buckley permalink

    Ill e mail you with the details, but please Finola KEEP ON BLOGGING

    • How beleagued, abused and oppressed can we all get in this totalitarian, ruthless, all for profit, assassins creed, but appearing ever concerned, paternalistic state.

      Big thank you for the support it means a lot………….

      • simone aspis permalink

        I have had Simon Duffy asking me what I thought the role of non disabled people were – as I wrote an frustrated email that I am tired of them setting up orgs to not only run oppressive services but also campaigns to stop institutionalisation of people with LDs – I said just back off – support the self-advocacy movement to take the lead – we need to have much more balance of power – as it has swang to far towards all these non disabled peoples lead orgs claiming to do something good for people with LDs!

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