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Who Lives Independently?

August 13, 2014

With the #LBBill gathering momentum, I find myself constantly returning to the question, “what is independent living”? I’ve read tons on the subject but there seems to be an inherent conflict in trying to define it. Surely, one’s idea of independence is a purely subjective thing. Can we come up with an overarching definition that will encompass everyone’s ideas about independence. What on earth do we do for people who are unable to communicate what independence means for them.

I get most of my cues about independence from Steven. I observe him going about his life and feel comfortable that his life is pretty independent. He is able to make choices, some he can verbalize, others need more effort and understanding of him to hear what he is trying to communicate. I know my MCA – its fine for him to make an unwise choice. Its also fine for him not to make a decision either.

So when I’m thinking about independent living, I tend to compare with Steven’s life, and that is probably unfair. I just did it on the way in to work. I wrote last week about the new block of supported living flats that one of Steven’s old schoolmates has moved into. I was sitting in a cafe having lunch when two support workers came in with Steven’s old friend and two other residents. Steven’s mate was unhappy about one of the other guys being there and kept saying: ” want him to go back to S House”. The other guy didn’t seem that fussed about being there but couldn’t leave because of the staff to resident ratio. It was tense.

I sat there dreaming up all sorts of fantasies. I was uneasy that everyone, residents and staff were referring to “S House”. It sounded like these self contained flats had suddenly become institutionalised. It felt like a house outing, arranged to fit around staff rotas. Does that accord with independent living? Supposing one of the three guys had wanted to do something different – would he have been able to or would there have been the staff to support him? My assumption, like Steven’s home life, is that each resident would have their own support. I didn’t expect support to be shared and activities arranged on a consensus. Do each of the residents have their own personal budget, or has the place been turned into a care home where all resources are pooled?

Here are two different scenarios with the same outcome and I honestly don’t know if one is okay and one is not.

1) A young autistic man lives at home with his family and has paid support during the week. The family decide to go out for Sunday lunch but the young guy wants to stay at home. He cannot stay home on his own, so the family decide he has to go with them.

2) A young autistic man lives in his own flat with live in support. He wants to have lunch at home but the man in the next door flat wants to go to McDonalds. There are not enough staff on duty to accommodate both, so the man has to go to McDonalds with his neighbor.

Of course, they are all just fantasies and I’ll never get an answer to them. Just made me realize that getting a Bill passed is one thing – making it work in practice is going to be much much harder.

From → Social Care

  1. In a way I feel there’s more independence living with the family – because there’s individual choice. I’ve also seen Karen’s friends who are in indipendent living going around together in a group with a carer…

  2. How often is it like this? Very often as you know but not being able to do something and being deprived of going out because of staff ratios etc is clearly a deprivation of liberty done frequently to people in so called independant living. It’s not any better than a care home when it’s like that

  3. Paul Moed permalink

    Independent Living is precisely that, in my humble opinion. It means giving a person choices that are not dependent upon the whims or even valid wishes of others. It means not having to rely on someone else to coincidently and contemporaneously have the same wish and desire as you do. It means exactly the opposite of being bound by a decision that is made for another ‘independent’ person and which impacts upon your personal choices.
    Sometimes, life sucks, for everyone, I know. The pool may be closed when you want to go swimming or the Library or the Park or it may be that there are no buses. Whatever. But those are instances of how life can and does affect us as individuals and which teach us understanding, patience and knowledge.
    Not being able to exercise your choice, and in a way perhaps worse, having to fall in with an activity (or not) because of someone else’s choice, is the exact opposite of independent living.
    The internet is full of wonderful examples of so many people living life independently, so much personal quality of life, please, happiness, joy that the definition or description of what is ‘independent living’ is there for all to see.
    The problem remains twofold (at a minimum):
    1. There are none so blind as those that will not see and
    2. Funding – which is usually a farce because of the enormous savings to be made in independent living as opposed to institutional care.
    I pray every day, often, for common sense, compassion and justice so that Harriet can be part of the community, making her choices and being facilitated in achieving them where necessary.
    I know others also pray for Harriet and I thank you all. I include in my prayers each and every person who is denied the right to respect for family life and who may be incarcerated – with or without some kind of so-called legal mechanism such as MHA, MCA or DOLS.
    It’s not rocket science. LET OUR CHILDREN GO!
    Paul Harry Moed – Devoted DaD of Harriet

  4. Weary Mother permalink

    It is a tricky one. If you ask anyone who has learning disabilities and who lives independently, you will find that the most important thing is the key to their own home/flat no matter how scary or noisy the neighbours. Once their door is closed it is their castle, however grubby, or cold when the always takes ages to be sorted heating… goes off again etc etc. All the La forgets to pay the agency again and all support is pulled, again. Or your post gets nicked again etc. Then there are all the vagaries of how much support and the nature of that support. Much of it is pretty scarce and crap at present. Not nearly enough support ever, so health suffers, and support is usually by the tired, exploited and poorly experienced and or disinterested. And then their are fears of an ever watching risk averse eye of the LA or housing association, and the looks from ‘able’ people who think you might bite them in the leg.

    But the issue here is the burning need we all have for a home, our home. The rest is a bog that has no bottom and no sides, stiff with skeletons on the bottom. Hang in there, first things first.

  5. Independent living means living the life that the young person wants to live, where they want to live it and supported by the people they choose. If Local Authorities ever put that person at the heart of their decisions it would be a wonderful day and would save a lot of money, time and pain.

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