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What Is Community?

October 30, 2015

This morning, NHS England & ADASS released their plans to close 50% of learning disability in patient services by 2019. There is some good stuff in the report, not least that NHS England and ADASS seem to be singing from the same hymn sheet. But why 2019. That’s a bloody long time if you’re trapped in an ATU. And why only 50%? That sounds like (literally) half measures to me. Where is the evidence that the remaining 50% still need the services of an inpatient facility?

The thing that bothers me greatly though is this statement: “NHS England is hopeful of jump starting the building of new community resources with its £45m fund”. Twitter has been awash with discussions about co-production, joined up practices, partnership working etc etc….

What is a community? A learning disabled person is the community. Their community already exists. A person leaving an ATU will either return to their community they left before their incarceration or they will move to a new community. A community exists with or without us. We build and shape our community from within. It is a work in progress. You can’t build it in advance. Communities are good and bad and we take from them what we need. And a community already has its resources.

Before I left for work this morning, I sat with Steven and ran through the plans he’s made for today. They were: go to Ranjit’s shop for a Flake; have a Fawlty Towers marathon; go for a pub lunch; search YouTube for the clips he wants for his radio programme on Monday; go swimming at our local Mencap pool. It’s important to point out that if Steven was still in the ATU, he wouldn’t be able or allowed to do any of those things. But the more important point is Steven’s day is his community. The ” resources” are either there, or Steven has built them. It’s not rocket science -it’s just a dead normal life. Steven lives in a normal 2 bedroom house, in a normal street. He’ll have a normal conversation with Ranjit’s whilst buying his Flake. He’ll have an orange juice and a bag of Cheddars in the pub, just like the other Friday customers.

Yes, he needs good quality support to enable some of this but here’s another thing – his five support workers are dead normal blokes as well. They might have a Flake too. They care about him and are interested in him. I think that’s a bloody good basis to life.

Please don’t sabotage the potential of today’s report by over complicating something fairly simple.

After all, we’re just talking about human beings. With human rights. And human needs. That’s it.

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From → Social Care

9 Comments
  1. Cat Meredith permalink

    Hi Mark,
    I always think you are brilliant, but this post is exceptionally on the money. Community is about people, simplicity and normality. Specialist provision is ‘special’ predominantly in its expense, restriction and disruption to the wonderful ordinariness of life. Orange juice and Chedders all round.

  2. Cathy-H. permalink

    Well said. Happy to hear they are going to close some ATUs.
    Glad they are making a start, but 4 years is a ridiculously long time.
    I look how long it takes them to deal with each case – take Josh for instance, who’s parents are counting down the days – it took 3-years for Josh to come home (well just a few more days now).
    Maybe in the meantime, they could at least swap some of the kids around, so they can be nearer home.
    It seems like the kids in Whales get shipped to Cornwall, and the kids in London get shipped to Glasglow, and the kids from Cornwall end up in Leeds. It’s like a strategic battle plan, gone wrong.
    And only 50%. What about the other half?
    Don’t stop contacting your local MPs to fight to make a difference.

  3. Jan permalink

    ABSOLUTELY!! I totally agree

  4. Teri McPherson permalink

    I strive for my son with ASN to have the same life as his sister and brother….WITH support!! Not too much to ask for is it??

  5. Melissa Layton permalink

    Spot on as always. Love your blogs. It’s not rocket science but why are we still not getting it right?!

  6. Sally permalink

    It’s good news..but
    In a sane world, the money used to run the far flung LD inpatient services would be supplemented then divided up between the Local authorities.. This would fund: community treatment teams with a brief to go into homes or see people in a local outpatient clinic to help with behavioural problems distress- and mental illness IF it happens to be actually in the picture.
    Difficulties would be anticipated and planned for (Say, if a bereavement or transition or indeed dementia was known to be on the way) .
    Parents would not need to scrabble for help.
    There would be LD day centres and activities running again so that loneliness and boredom would be having less of an impact.
    IF someone needed an inpatient stay this would take place locally and under rigid conditions. A rationale for inpatient treatment, a strict time limit, staff required to produce evidence of assessment and treatment .
    My fear is that the funds will vanish and we will be stuck between the local authorities
    saying they can’t help with accommodation with treatment, and the central Government saying the LAs all are expected to do so , so we should take it up locally.
    It never works to sit in a LA office squawking : but the Government said …”

    • Trudy permalink

      Sally this is happening now.

      LA’s can say if support is required by person with LD, who live in ‘supported’ living, to access health acre this is responsibility of NHS to provide. NHS can insist on months long assessments by a clinical psychologist then another big assessment called ‘core’ assessment before any support will/can be provided by NHS. By then poorly person with LD could be dead.

      I heard recently of a married couple where both have serious learning and other disabilities. One partner was critically acutely ill; the LA refused to fund/support the other learning and physically disabled partner to see very ill partner in hospital. It was only by a kind other, were visits made possible. The couple are in the ‘care’ of the LA. Like others in this LA both have been seriously neglected for years.

      There is no doubt that if long awaited community living for people with LD and autism becomes reality, there will be lengthy misery provoking and potentially deadly wrangles between LA’s and NHS around whose responsibility ‘it’ is….

      Life for people without family who live in ‘supported’ living is dire in too many places at present. Their ‘community’ is the small lonely space they occupy. Their peers and friends are people in a similar hideous situation.

  7. Thanks for your post, it made me think of something I’ve been hearing more and more of locally, which doesn’t sit right. My concern when I hear ‘community resources’, is that it means us all living in harmony with neighbours covering our backs, taking our vulnerable to the pub out of kindness, doing their clothes washing, etc, etc, and statutory services are seen as no longer required so funding is cut even more.

    My concern about this started about 2 years ago, when quite a well known person in and around Wigan, suggested a mum buy a specialist pushchair off eBay, when wheelchair services wouldn’t provide one for her child who has a degenerative condition. She then told about her successful bid for DIY SOS (the TV programme) to carry out adaptations for a disabled person (who should get a Disabled Facilities Grant). This person has a joint venture near where I live, and is heavily supported by Wigan Council. The venture, as far as I know, is based on the asset based community approach, http://www.in-control.org.uk/events/in-control-webinars/webinar-recordings/asset-based-community-development-13314.aspx and I’ve seen that they have advertised for people to be carers for vulnerable people. The ABCD model reads great, that we all pool our resources and live happily ever after, but I think it would lead to more segregation of disabled people.

    Whilst I want my son to be treated as a valued member of society, equal in worth etc, who gets a job if he can/wants to, goes down the pub with friends, it terrifies me to think that the support he needs to do all this stuff would be unregulated, and just all done by people who are kindhearted and doing it for free. I do think there’s a risk of ‘community resources’ being potentially risky operations that don’t safeguard vulnerable people.

    Sorry for waffling, but I just wanted to say how people can misinterpret, or be ambiguous about things, and many carers who are at their wits end might believe things are being done the right way, so in a nutshell, I think we should be slightly cautious, in case cult organisations take over 🎃!!

  8. simone aspis permalink

    Mark u got to make “community” or anything around people with LDs complicated – is not that what creates these so called jobs!

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