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The LBBill & Dr J Evans Pritchard

August 8, 2014

On 18th July I wrote the blog post, “a plan”. Within days, the suggestion I made grew like Topsy into the LBBill. It was a serious suggestion but I didn’t really expect anyone to take it seriously. In a nutshell, the idea was that there should be a statutory presumption that everyone should live in their own home of their choosing. Because the original post was about people trapped in ATUs, some people have assumed that the Bill would only apply to people with learning disabilities. That was never the intention as I believe the Bill would protect not just the learning disabled, but people with physical disabilities, the elderly and people with mental health issues. Everyone. The overwhelming response is that it is a good idea but as the discussions that have followed have shown, there are lots of potential flies in the ointment.

Two major issues that keep being raised are: 1) Where is the housing going to come from? and, 2) How is this going to be funded? My responses around this are rather simplistic and I’ll leave it up to others to debate more thoroughly. To the first question, I would say, in the most part, the housing is already there. A person is already living somewhere before officialdom deems they should be living elsewhere. Let’s look at what it would take to enable the person to continue to live in that home. For others, I would argue that housing is out there but it needs a quantum leap to see the possibilities. Many professionals talk the talk about independent living but have a real resistance to turn that talk into action. As for the second question, I think this is just as much about will and changing cultural patterns, as the austerity argument that always seems to be shoved at us. This is the time for all the Personalization talkers to step up to the plate and prove that it can be done.

One thing that is fascinating me is the amount of tension the idea of the LBBill is creating. How can something that most see as a great idea be causing so much wobbliness? I can see already for all those the Bill might benefit, there are those who might lose out. Those with a vested interest in maintaining the status quo. Those who make a lot of money out of the present shambles. So, not the people using services – more the interested parties. Never mind. Tough titties.

Last night we were up till 3am as Steven is not sleeping well in the heat. We found ourselves watching Dead Poets Society. In one of the opening scenes, the boys are reading the book ” Understanding Poetry” by Dr J Evans Pritchard. Robin Williams rips out the opening chapter,arguing that art, poetry, love, life can not be expressed as a scientific formula. I feel a bit the same about social care – the words, the systems, the ideas have no relation to the people they are meant to be about. Lives are minimized. Lives are sterilised. Human beings become objects.

So let’s turn the status quo on its head and let the human beings take charge of their lives. Capacity? We’ll see. My instinct is that most people, Ill, non verbal, in mental decline, still have a pretty good idea what they do and don’t want from their lives. The trick is to listen hard.


From → Social Care

  1. Cathy B permalink

    You are so right about this. A proper home is so important to the human psyche that it should be the primary focus of any care plan.

    I have some mental health and physical issues which restrict my mobility. A while ago, with my benefits not covering my mortgage and needing a downstairs loo, I had to move home. I couldn’t afford to move locally, SW London, and unable to get a mortgage (“we don’t lend on disabilities” wtf?) I had no option but to move to where I could buy outright with the small equity I had in my lovely home.

    I am now 70 miles away from my friends, my family (my father has Alzheimer’s: I wonder if I’ll ever see him again), my smashing neighbour who used to cook for me when I had bad days, the GP and care workers who understood my problems, etc. I lost my support network and my lovely home with its kitchen designed around my disabilities and my 100’ garden that gave me such pleasure even though I can’t garden anymore.

    And I miss London. I used to be so proud to sing “I live by the river”.

    My new home is, possibly, killing me. I can’t use the kitchen, the garden is like stepping into a neighbour’s window box, the new GP thinks I’m a malingerer and refuses to visit me at home, I can’t move from the back room (have to sleep on the sofa) and I see no-one except a cleaner once a week. Prisoners are treated better. Yet I know I’m luckier than many.

    Human beings as objects? I’ve been told I have to go to my GPs surgery to have a blood test before they can refer me to a clinic. I asked why the blood test was necessary – there’s no clinical reason for it – and was told it was ‘protocol’. No blood test, no clinic, no help. Objects? Yep. All tick boxes, protocols, outcomes and the tail wagging the dog.

    I can’t regret moving – I had no choice. But I regret that there was no support for me to either help me to stay in London, or to help me to find a more suitable alternative. I truly believe that if you get the home side of things right, the rest is easier, more productive, cost-efficient and healing. And everyone is happier.

  2. jayne knight permalink

    Oh Cathy what a real shame that is. A home as you know isn’t just brick walls, its a safe place in a community you want to be in. We really do have to look at far more imaginative ways to help with housing. There are just so many possibilities. I am in the process of helping set 8up a new housing association. I wonder whether you might have some interest of becoming a member so you that people can genuinely look at the ways housing should be looked at in the future.
    Mark I have worked for a small charity for many years until last year. We never had very much money but we created some of the best housing solutions and were known for them. Necessity became as they say the mother of invention. Money is completely wasted to maintain the status quo of these expensive institutions. I can remember looking at my budget of £1milliom for 80 people ,some of them with very high level needs to the hospital budget for 200 people of £17 million. I worked out that was £85,000 per person. I worked out that to sell the hospital to developers would bring in about £30 million which it did. So that meant on average a home for everyone and a good community life instead of living with 40 other people with a curtain inbetween you.
    Chris costs the NHS £500,000 per year to be supported by people who are clueless and do not love him.
    I have just seen them throw similar figures at another situation. Unbelievable. The cost of Claire’s placement will be extremely high.
    We should be able to demand a fundamental right of remaining in our homes. How the state pays for that is not the question it is the next stage of that acquired right. More relevant development of low cost housing is needed that is appropriate, easily served and local. As I have said we are developing the housing association with the Cameron Trust at the moment. I am interested in talking to people who would be eke to make this a very focused organisation and so if there is any interest from you or others please let me know so that I can make this part of the internal and external application. This is not a plug for a service sell its about making an organisation grass roots and representative from the beginning.

  3. Cathy B permalink

    Jayne, thank you. I feel shades of mortified now that I’ve calmed down from my little pity party. I guess Mark’s words resonated (as they always do) and sometimes it’s good to vent. Anyway, I would love to be a member and help in any way that I can. I have some rusty skills (MBA, housing & social care background – oh, the irony) and an understanding of the practicalities of living independently. I’m not sure how to get my contact details to you – perhaps Mark can pass on my email address?

  4. Shirley Buckley permalink

    Ihad it all set up to buy a house for Martin with a team of carerswho knew him well. Mr Justice Charles wrote in his judgment October 2007 that for this to happen would be a SITUATION IN WHICH A DISASTER WAS WAITING TO HAPPEN. And he continues to hold this judicial opinion

  5. Weary Mother permalink

    Council Offices? Who are they for?

    I can walk into a hospital, a bank etc etc etc etc etc by pushing open a door. We found that this is not the case with Council Offices. Are they more vulnerable than all these others? If so on what grounds?
    I mentioned recently that I had attended a meeting; the meeting was in Council Offices. We travelled a long way to get there, and we got up very early and helped two learning disabled people get ready for meeting.. My son is severely learning and physically disabled. We had requested to book disabled parking, told none was available. The short’ish walk to the building tired my son and we took rests on the way. When up Council Office steps (with difficulty) we got to posh revolving door, and we could not get in. People went in and out and ignored us for some length of time. Receptionist observed us for some time from inside. Eventually receptionist got up and shouted through glass ‘you need a pass from other offices across the road’. So one old person plus dicky ticker, goes up and down lots of stairs of other offices TWICE, only to be told TWICE – ‘no pass without an employee signing’, us in. Elderly person plus their tired very dicky ticker, and puffing from the failed attempts up and down the long flight of steps to other offices (TWICE) finds other anxious elderly person now supporting learning disabled son who is in a great deal of pain from standing so long. Pleas for a chair, or to let man in pain into building, all have failed to persuade all who go in and out of offices. One employee in passing us says ‘this building is for people who work here’. Blisteringly angry and very concerned I say ‘and we are clearly non people’. So we two elderly people drag our son who is now unable to stand or walk, to the outside wall across the road, ‘of offices where you get a pass’,but only if you are a person. a wheelchair is found and all in order process wise we cross road to meeting , where the two ‘for people , disabled parking’ spaces outside the door of ‘Fort Knox , are still empty.

    And the (usual) solution to all this, is not…… to carry out a witch hunt to find out who (was in fact a really good person who pulled out all the stops to make this meeting happen) made a very human mistake, and forgot to tell us that we needed a pass, to prove we are people……….

  6. Cathy B permalink

    Weary Mother, I’m seething on your behalf (yeah, not much help, I know). I really wonder what has to happen before people actually ‘get’ this.

    A council building I knew had the wheelchair access in the back – the old tradesmen’s entrance. If you weren’t in a wheelchair you were treated as very odd, a nuisance or willful for not using the steps at the main entrance.

    A local newly built shopping centre was designed without benches or seating, I believe in case it attracted rough sleepers (safe hostels and adequate care anyone?). And the disabled loo in one of the restaurants is on the first floor – you have to go out of the building and along to a public outdoor glass-sided lift to get access to the restaurant’s balcony and hence through doors to the loo. Seriously?

    Planners / architects should have to spend some of their training in leg shackles, ear defenders, glasses smeared with Vaseline and their dominant hand in a restrictive splint so they gain some understanding of what it’s like to not be able-bodied.

    I hope the council concerned has learnt from their mega fail. I think that probably makes me an incurable optimist who’s lost touch with reality!

  7. Weary Mother permalink

    Cathy B

    I think we might be talking about the same council offices. We did not in fact go in the ‘posh’ door that we waited outside in vain for help, (the one that ‘real people’ have a pass for). When we were collected from our wall opposite, we went across the road and round the back of the outside of the building, then through a very dark seemingly dingy corridor to a small (to me) tired meeting room. I could lay a bet this room is only used for ground floor status people in the LA and for people like us. But we were very, very glad to be there, for it was hard won meeting and good committed people helped us get there. I have not complained to the LA, for are waiting for the result of the meeting and it has been a long hard journey many, many institutional humps in the road on the way!

    I must emphasise ….in our long experience not all paid LA people are obstructive; we have met many of the very, very best on our years long journey; increasingly fewer of them and sadly too many of them are getting ill…….and then of course……there are rest…..who seem to get promoted? I could be wrong.

    It was very shocking tho’ that the parking spaces were vacant when we were told they were not.

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