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Ungilded Cages

February 13, 2016

I’m just coming back up for air after the incredible response to my shout out for contributions to a book about the lives of learning disabled people post children services. 77 emails within 48 hours. Loads of Private messages on Twitter and Facebook. A really wide mix of responses from families and from people working in the system. Thank you so much.

The one thing that is immediately striking from all the stories is the downright unsuitability of nearly all the service provision. The stories fall into two camps in the main. I’ve been told umpteen stories of people receiving no support (or pitifully small support) rendering the chance to live a meaningful life, totally impossible. The second, shocking camp, is the many stories of totally inappropriate, entrapping housing.

If you read these stories, you’d think there were only three types of housing available for learning disabled people: ATUs, large 20+ bed residential homes or blocks of supported living units, shared with other learning disabled people. Another thing that seems very common is for places that are presented as one thing but in reality are something quite different. This shows up particularly around supported living. Often it’s just a care home rebranded. Most worryingly, a number of people don’t know what they’re living in. They’ve been dumped in a container. The Lenore Care Home model is truly flourishing.

There appears to be little or no choice. And there’s an abundance of people being lumped together because they have a learning disability. Can you imagine The Daisy building 40, two bedroom units, pairing up 80 strangers and promoting it as home for 80 diabetics? Or imagine St Andrews applying for an 120 bed extension to House 120 gay men in their Sixties. Or people going to an ATU to have an operation and then staying there for eight years. But its considered fine to chuck 80 autistic people in the same place.

It’s made me realise how lucky Steven is to be living where he does. He lives in a normal house in a normal street. It’s a Brookside Close type cul de sac. Across the road he’s got the Asian teacher and her disabled father; the retired couple, the extremely large traveller family who’ve had two houses knocked into one. On our side of the road is the Iceland delivery driver, his wife and kid and next to them is the house with the four students from Brunel in. The only thing we all have in common is our difference. And that we’re very different human beings. With very different lives.

But as I bless Steven’s good fortune, I remember how he came to be in the Cowley house. It wasn’t person centred planning. It wasn’t a careful assessment of his needs. It wasn’t a best interests decision. It wasn’t choice.

He’s there because the council sought revenge for the court case and damages, set us up to be evicted, made us live with the fear of homelessness for 18 months and then gave me 6 hours to accept what they were offering.

The fact that it has turned out to be the best for Steven is pure fluke. It’s not a cage.

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From → Social Care

19 Comments
  1. Emily permalink

    Hi Mark
    Firstly, I know I won’t be popular when I say that a secure service will always unfortunately be necessary for a small population of people with ID/LD but these don’t need to be large institutions or even full of wards where lots of individuals are sat around staring at one TV and fighting for choice of TV programmes. Having worked for years with men and women who offend but also have ID/LD it is absolutely necessary there is provision that provides proper treatment in a non prison environment. However, I am talking about the people that have clear offending histories and have been through the CJ system. There are many things I would change about the “units” that currently exist – that would probably allow treatment to be more effective in less time and the drive should always be to get someone rehabilitated asap. What I don’t agree with is using these places as warehouses for individuals who simply exhibit behaviour that might challenge. What you describe is unfortunately all too often the case. Either individuals are lumped together in big homes owned by big faceless companies, or in huge supported living “villages”. I’m not sure what the answer is. I do know from experience that the first step is getting people out of institutions and this is tricky as often behaviours have been created and shaped in these environments, individuals feel safe with the walls and procedures and the transition can be difficult. Lock someone away for long enough and they will feel frightened by their open community. Therefore a good care home, with plenty of trained staff, in a flat that has space and privacy is probably the best first step. The problem that is faced is where next? We have tried moving people on into supported housing and the housing availability and costs just don’t add up and it’s bloody frustrating. Equally, we have seen people move on, become lonely and depressed as their package of care was slashed from 24 hours to 3, only to find them being kicked out- another failed home experience. I know it feels depressing, but I wonder whether you should start by planning on paper what the ideal would be and what it would look like? There has to be a positive to aim towards otherwise we all feel paralysed with the lack of hope. Your voice is strong, so carry on with the book, even if it feels too hard – you will have plenty of support..
    Emily

    • Lizzie D permalink

      24 hour “care” in an ATU or hospital – several thousand pounds a week. Care Home, £500+
      Three hours home care? Is that a day or a week?

      Home care isn’t cheap, but if cost doesn;t dominate everything else, and there was the will to set it up constructively with proper community resources, it probably would be the most cost efficient – especially if highly motivated carers/”service users” have a say in how it is organised.

    • Hi Emily. I agree, sadly, that some places like that are necessary. As an insider, can you say some more of what you mean by treatment?

      • Emily permalink

        Hi Mark, yes treatment that includes a good formulation of the problem to start with. This might be an offender focused treatment like sex offender work, fire setting (which actually is usually about emotions not necessarily fire), psychosis treatment which may include medication to reduce psychotic symptoms, all alongside a wider understanding of the person, their background, family context and social support, their experience (often unfortunately of failure and rejection through many services), and what their goals, needs and wants are. Treatment can mean so many things and can unfortunately be misinterpreted. The good lives model is useful as it focuses on the positive aspects of the future, not the negatives.. I have experienced individuals who have desperately needed formal therapy and benefitted from it. What I became so frustrated by was sitting in tribunals that ended in the individual staying in hospital for yet another 6 months as no suitable accommodation or support could be found, only for them to start losing skills and hope…really depressing, hence the reason my husband and I started our company. After 10 years it’s still frustrating and a roller coaster but we really do believe we can help – sometimes when I listen to all the comments about social care I start to think maybe I am wrong? I wish I knew how to fix things!!

      • I think, with 74% of autistic, still on a mix of anti psychotic medications ie chemical coshes, and antidepressants ie mood enhancers, I think, we can safely guess at what is meant by ‘treatment’.

        Although, we have no central records of the use and apparently little control over the amount and mix of these medications in supported living units.

        Pharma, is our third largest industry, and it is certainly boosted by enforced medication on the LD/autistic, and now, all those with ‘behavioural’ problems.

  2. Jayne knight permalink

    There are amazing supported living providers for people with offending backgrounds. Go on to youknow.org.uk. Look up Eileen Flavelle and see what she has done. Just email her. Sam Sly is on there too. There are real opportunities out there and there’s no one better to help you than them.
    Individual housing is available. Our new website letsforlife.org.uk has just gone live. We don’t do units. We do ordinary. We should be registered by April. It’s not a personal plug because my job was to get them registered and set it up to not be a unit led mentality so I’m likely not to be needed soon.
    But the more we can do the ordinary the better. I’ve supported many people into ordinariness that were considered ” very dangerous” the last 35 years. X

  3. Jan permalink

    It’s possible that the people who enter the Criminal Justice System (very dangerous!) are people that have been misunderstood and didn’t get the care they needed in a timely way. So maybe if the LA’s meet peoples needs instead of always looking to cut costs in a negligent way less people would be deprived of their liberty!

    • Emily permalink

      Yes agreed, but it’s also possible that I am referring to individuals who have a clear sexual offending history and those whose mental health requires stabilising in hospital due to risks of harm to others. I am all for early intervention, but I am talking about those with clear offending histories who have beliefs and behaviours that require treatment. I have seen people with LD end up in prison – it is not where they will receive the correct help. We cannot go from one extreme to the other and need a balance.

  4. Lizzie D permalink

    That balance isn;t going to come though if people with very problemmatic behaviour, people with mental health problems and people with LD are all mixed up together.. One size fits all solutions are never going to work.

    Even able bodied, neurotypical people, don’t automatically become fully functioning adults at 18. Of course those with LD and other problems should have the rights of adults, but a bit more subtlety and common sense would’t go amiss.

  5. Emily permalink

    I think you misunderstand. I mean people with a LD who also have a mental health need – you are correct, one size certainly does not fit all….

  6. weary mother permalink

    Lizzie
    I agree, well said. I am concerned about the conflation of people with lD who have offended against the law and the community and who are In the criminal justice system, with non offending people with learning disability and or autism’, who statistically are rarely seen in this offending group.

    Both have support needs unique to the individual, but the conflation of the two groups could cause issues we don’t need at present?

    • Emily permalink

      Yes, I absolutely agree. The “secure” (awful word I know) accommodation and care really should be only for people with ID who have committed a crime and been sentenced. They are too vulnerable for prison so do need a service that is geared up to provide locked doors but that can also help rehabilitate their offending needs through proper therapy. Believe me there are many improvements that need to be made currently to these places (as for mental health hospitals as well). Unfortunately for some, they enter the criminal system not because of their clear offending behaviour but because of a so called clinically difficult presentation which as we know can come about because they have not been understood, have experienced failure, rejection, are scared and therefore acting out (wouldn’t we all). There needs to be clearer understanding from community teams, police and courts so they can understand the reasons for the behaviour and create a positive plan around the person so they don’t end up being detained (sometimes under a civil section not criminal one) and made to share often communal accommodation where the risk is that they are vulnerable on so many levels. We also should focus our efforts on the kids entering adolescence and identify at an early stage which ones may need what type of support. Trouble is, the services are always crisis driven and not proactive in their thinking. They don’t get spending money now to offset the crisis later…

  7. simone aspis permalink

    Mark I hear nothing about the book including the voice of disabled people with learning difficulties -invisible again parental and service delivery professionals dominate the debate about us. I yet to see disabled people with LDs involved in any of the reviews that have seen systematic attack on their lives. The Valuing People was a f—— joke – see an article I wrote anticipating the tokenism in Community Living magazine – make your judgement on whether I am right or not. Why not encourage self-advocacy groups to write a blog on a regular basis – People 1st self advocacy is one – with all these reviews DOLs, service reviews, investigations into cruel and crap practice – why are not we hearing a squeak from people with LDs – why are not we making the effort – maybe ask for a press release from People First…. I am getting weary of hearing everyone other than the voice of people with LDs on such issues. Not suggesting we do not need alliesl they are plenty here and this is great – but we need to be sure that there is still a clear space for the voice of people with LDs – and that space seems to be disappearing or has disappeared. Can we please create that space here – let’s start asking self-advocacy groups to contribute towards the discussions – the problem has been no one is asking for our view anymore – so can we please begin here.

    • I’m not sure that I’m the right person for that Simone. It’s way beyond my experience. I try never to claim anything in this blog that isn’t either my personal experience or my opinion.

  8. Lizzie D permalink

    Simone, your point is very well made – as a parent/carer, I have no right to speak on your behalf – but at the same time, I get a bit nervous when people with your degree of clarity speak out on behalf of my daughter. What is the point for making provisions with LD, Autism, Mental Health problems as if they all shared common needs and a common point of view?

    I am waiting for my daughter to be summoned for a WC assessment..Filling in the form is a nightmare, split very clearly between physical disabilities and cognitive problems. My daughter’s main problems stem from her physical disabilities, and they certainly cannot be easily separated – but because the label LD is stuck on her for administrative convenience, (at 18) people seem to barely notice her physical problems anymore.

    Basically, this boils down to – I hate labels. They allow some very arbitrary decisions and assumptions to be made on very unhelpful grounds. How can we convey the idea that it is the individual, not the label, that matters?

    My daughter is generaly able to make her needs and wishes clear – but not fluently, and not on all occasions. I speak on her behalf at her request – but this may not always be obvious to others.

    • simone aspis permalink

      I am tired of this divide – would we be saying this about disabled people with Phyiscal ans sensory impairments – it really feels that we are going down the medical model approach here. Our shared experience of oppression is the same but how its experienced on a day-to-day basis will vary between different individuals with LDs. What disables us is not what intellectual capacity / incapacity or what we can or can not do – its about the bloody barriers and capitalism that we all face because of being labelled as having LDs – I,.e the social model of disability – It would be very assumptionase to assume that I have no shared expression of oppression with your children. So let’s begin – your child like me failed a so called psychometric test IQ and other so called tests) that defines who is “intellectually” normal thanks to “binet” From that test your child just like me faced segragatgion and dehumanisation – Yep I went to a special school (a residential one that has been closed down as a result of OFSTED’s special measures. My life was planned just like your child’s by the professionals expectation of being in a Adult Treatment Unit (okay I escaped that because I was suppose to go into a Camphill Village instead!). I should have also added that I was medicated (I challenged that), And yes I lived in a supported living unit – so know exactly what its like – Yes I was assaulted, and yes I was treated badly and yes I made a formal complaint to the Housing Association.

      What I hope I can bring is the political accunim to understand how to create a world that caters for what we want and what that might look like as I do have political awareness and personal experience as a disabled person with LDs thrown into the mix. I was subjected to many of the practices that many of you have talked about aliquently – Okay I have escaped but that was not easy – had a great social worker who worked with my parents – and there were struggles – after when into mainstream education. Believe me if we understand the social model of disability – then we will understand that what unites disabled people (including your children) is the cultural, organisational and attitunal and environmental barriers – believe me I have a good understanding of Mental Capacity Act issues – Believe me I have been talking to the self-advocacy movement that easy read information whilst is important is not the central thing that will liberate all of us (including your children who may not have the capacity to read and write – I get that). My life started when I began working with People 1st as campaigns coordinator to fight for people with LDs rights to direct payments and civil rights – And I worked with experiences of people with significant LDs to raise the issue to Ministers and civil servants – I have also believed that we can never have inclusive society unless we begin to think what that might look like for disabled people who face the biggest barriers in a capitalist society i.e what that might look like for many of your children – so lets unite not divide the LD movement. We are stronger if we can see common ground…….. All my first email suggested was that we need to make sure that people with LDs voice is heard not at the exclusion of anyone elses but included.

  9. simone aspis permalink

    Lizzie ….” I get a bit nervous when people with your degree of clarity speak out on behalf of my daughter.”
    Simone asks “on what basis – and why should that be a barrier?” I have no problem with someone disabled with LDs with a “higher” degree of clarity speaking out for me – I also have no problem with someone with LDs who is less “articulate” than myself speaking out for me either. Surely its about what we are saying and taking the time to help the LDs movement to find common ground and working with people who are articulate or less articulate work together to champion our rights.. Saying that some people are too articulate does not help us win our rights. Similarly saying that some people with LDs are not articulate enough will not help us win our rights either. If those who are the “articulate” do not reflect the experiences of people with LDs less articulate then we will never win the argument. I can tell you I had some massive arguments on direct payments legislation and all that awful stuff around “willing and able” knowing that not all people with LDs will be “willing and able” to manage direct payments – or even understand the concept of money, direct payments – but what is clear is that everyone with LDs must have the right to benefit from the outcome of having personalised support that comes from direct payments. And of course I recognise that DP should not be used to buy a society – a society must exist so that all your children can take up the opportunities in the community – I get that.

    I also had massive arguments about the MCA – Changing Perspectives were invited to give oral and written evidence on the MCA during its passage. I was in favour of supported decision making – recognising that some people with LDs like your children may need a lot of assistance in making decisions and in some occasions a substitute decision maker may be required i.e. for managing money, investments etc etc.

  10. Pauline Thomas permalink

    Simone you are wonderfully articulate. I hear your frustration about not letting people with LDs speak for themselves. I get it. I also get the points of view that Lizzie has raised with you. However you must agree that some people with LD are so stymied by their disabilities that sometimes they need someone to speak for them and it usually falls on the shoulders of the people near to them. People who share their history and people who give unconditional love to the person they are looking after. Whether this actually manifests itself as the right life for them I do not know. I only know that all I wish for my son is that whatever life he chooses is a happy one. That is if he ever gets the chance to choose for himself.

    My son has lived for 44 years in the same home, sharing ups and downs like all families with his two siblings, now left and leading their own lives with their own families. Something my disabled son will not unfortunately ever achieve. just like Mark’s son Steven he is living in a normal community. We have had some brilliant neighbours who have watched him grow up and have welcomed him into their lives. Sunday afternoon tea visits with a neighbour. (now moved away). Another neighbour visited him regularly in hospital when he was 17. Plenty of christmas chocolates from nearby neighbours. My husband often joked that we lived my son and not the other way round because he and his music had taken over the main living area. However old age has crept up on my husband and I and we are getting tired. Also my son’s reliance on epilepsy medication for over 26 years has led to him developing a psychosis. Medication is not working for him. It makes him different. He is anxious and withdrawn. and poorly motivated. It is upsetting to watch. He will need guidance in choosing where to live when he leaves the family home and I truthfully do not know what sort of home that will be. A happy one I pray for and with support workers who like him enough to give him a good life.

  11. simone aspis permalink

    Parents can represent each other – (i.e. the LBBILL campaign) women can represent each other – why can not people with LDs represent each other – people with LDs can not just only speak up for themselves but also for others – please explain?

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