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Cheap Nights

October 14, 2014

I had an update review of my carer’s assessment this morning.

Before I launch, I just want to point out that I’m not knocking the social worker. She is cool and in a way, is only the messenger. The problem is with the dodgy policies that she has to work with.

Regular readers will know that I am in the process of buying a flat with the purpose of using it three nights a week so that I can try and get some decent sleep. The other purpose is to transfer my workplace to the flat, saving enormously on the rent I currently pay for my work.

At the moment, Steven’s care plan states that he needs 1:1 support 24 hours a day (2:1 support whenever he goes out). In addition I receive 42 nights a year respite allowance. For the last few months, I’ve been so ground down with tiredness that I’ve been making the respite allowance up to 52 nights (1 night a week) out of my own pocket.

Anyway, at today’s meeting, the social worker announced that. although my request hasn’t come before Panel yet, the management will only agree to submitting a proposal for two nights per week. Obviously this is more than the current allowance but 1 night short of what I had asked for. Therefore, the revised care plan will work on the assumption that I will be doing 5 nights per week.

Where it gets sticky is when she told me that the policy is to compare the cost of a package in the person’s own home compared to the cost of a package elsewhere. Best interests don’t come into this at all. She used as an example of a cheaper package, the new supported living flats that have recently opened near my workplace. Each resident has their own flat with its own front door. All of them have support needs similar to Steven’s. However, their night time arrangement is very specific. They engage two night time support workers to cover nine flats. I’m not sure how that works practically because presumably the resident is in their flat behind their front door. I guess the support staff have keys to each of the flats and let themselves in to check up on the residents throughout the night. Or perhaps each flat has Telecare? I don’t know. But the point is, this sort of night time care works out cheaper than 1:1 in the home, albeit that I’m only asking for three nights.

Interestingly before we got onto this, we talked about the future and I told the social worker that once I’ve passed away, Steven will have the new flat that will become his. But depressingly, it looks like he may never get the chance – either to stay where he is now or move to my flat. Both of them would require a night worker 7 nights a week, and if they won’t pay for three, they are hardly going to pay for seven.

All this makes we want to jump off the nearest cliff. We talked about how much Steven struggled with communal living the year he was held in the Unit but that won’t matter in the future. No matter how much he loves and thrives in his own home, he won’t be allowed to live there because it is seen as too expensive.

Independent supported living is nothing of the sort. Each of the residents of those flats might as well be in a communal residential home. It’s pooled budgets. It’s pooled resources. It’s pooled lives.

I am so scared of the future.

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From → Social Care

20 Comments
  1. Fat Nat permalink

    Supported living is one big con. I’m a support worker and am becoming more disillusioned by the day. Money is the only thing that matters and most of the big charities run businesses providing support and preach on one hand whilest doing the complete opposite in real life. My son has ASD and will never go into supported living despite me knowing lots of great support workers. Rant over!

  2. Brigid Greaney permalink

    I’m also terrified of the future

    • Me too. How can we not be? Hard enough while we are here to fight.

      24/7 care IS expensive, compared with supported housing, but not with ATUs Don’t know what the answer is, and not sure that those who are not worried sick are looking for one. “Care Industry” seems to blossom, while actual care gets worse.

  3. Surely the residents in the supported living aren’t getting 1:1 support if 9 people are sharing 2 staff? It seems spurious that if Steven’s support plan says he needs 1:1 waking night support this is not costed in relation to what this would cost elsewhere i.e £££.

    • I’m guessing Marina but the people in the flats must have had their support plans manipulated to state that a 2:9 staff ratio is acceptable. There’s no way I could find out how much the agency who supply those 2 staff charge for their overnights but whatever it is, it must be less than providing each resident with a 1:1 support

      • It’s fine if that really is their support need – some people will only need someone checking in and if there *is* telecare etc it may well work (and some may find it less ‘intrusive’ than having a support worker there 24/7), but I can’t see how they can say that compares to Steven’s need to have someone with him all the time, it’s just baffling. I’m so sorry you and Steven are not able to get what you need.

      • That’s where the emotional blackmail comes in, because of course, Steven will still get his needs met. I’m not going to go off for a night and leave him on his own. It’s me who doesn’t get my needs met.

      • and yet you save them a fortune by meeting Steven’s needs…It’s a constant battle, I’m dreading what will happen when my son gets older and he is much more able to be ‘independent’ than from what you write of Steven he is, and I work in services so technically *should* be able to navigate the system. If only it were so easy :/

  4. Jayne knight permalink

    I’m hearing this so often. I’m really wondering about a group of parents with that exact worry getting together to make some sort of pact about it looking after each other’s interests. I really wonder what could be done about that even if it’s only the people I know that say that being the people who make promises morally and legally to each other, I promised a lady twenty years ago I would make sure her daughter would be ok. I’ve honoured and will always honour that promise. I didn’t know her well but she had no one else. I have made one other similar commitment. However I keep wondering about how those promises could be made and followed through snd even if it can only be for so few people then it’s something that maybe could be copied by others. Better to make a promise for one more person in your life than never. I hope I’ve made some sense.

  5. So they are proposing to downgrade Steven’s assessed level of need on the basis that if they provided it on a not-like-for-like basis it would be cheaper? Logic by Lewis Carroll out of Kafka…

    LB Bill can’t come soon enough.

  6. Agree with kara2008 100%

  7. Weary Mother permalink

    And at the front end is the assessment lottery. The assessment may well be done by a, by the job locum to this LA, Who has never met our son or daughter. Their brief: (apparently) is make it quick and cut our costs. Day centre care: with friends and staff to monitor our son or daughter’s gradual decline from inadequate and dangerous support, ….remove it.

    Lucky ones will get non building based etc etc…..And a different non English speaking zero hours support worker, in a revolving door of ‘keep ’em fed’.

    Advocate? A short intervention only,inexperienced contracted worker: their provider on contract to the paying piper, the LA.

    Unless a son or daughter has someone capable enough and selfless enough (eg a constantly clued up on the ball (‘pain in the behind – LA’) mum and or dad to challenge the non turning up or worse support staff,and the ever more harsh and dangerous reductions…you will see them: someones son or daughter out there in the street alone. Down’s, and fat, dirty and lost wandering and looking for any friendly smile or company out of their lonely room/flat, Then, their getting first, chronically then acutely ill, from zilch/zero allocation of support (or any responsibility for monitoring any of this)… for their health care needs. True story.

    They get burgled,? No support
    Crises ? No support
    Big fat/any document and they cant read? No support, Benefits stopped..no support….. True………………………… ………………………………………………………………………………………,

    all true..
    ,
    ,

  8. We have the same issues with N living at home and nights. We are penalised for working our butts off (and hers) to give her a purposeful life at home with so called Choice and Control through Direct Payments. Assessment is another word for cuts.
    I can’t understand those friends of mine whose young people live in supported living and who don’t know what their young peoples’ packages are? Is this unusual or is this how care providers make their money and pay low wages and have low staff ratios without questions?

  9. If Steven has an assessed need of requiring 1:1 support are they not obliged to meet that need?
    Also, isn’t it his right to become independent of his parent whilst you are still able to help with the
    transition? Because sudden changes are a big problem for someone with an ASD and planning is of paramount importance. Of course, I do know the answer and have been fighting it for 2 years for our own son! As you rightly say, the authorities are not interested in ‘best interest’. I know it wouldn’t work for our son with ASD being placed in communal living, with the increased anxiety he would become ‘the problem’ in that environment and we all know what happens next! And it would cost a lot more!!

  10. simone aspis permalink

    Sadly Lord Sugar’s apprentices (Stephen) are also on the supported living schemes for people with moderate and mild learning difficulties – what aspirations is there for something different – why people with moderate and mild LD rather than people with LDs full stop! we all know

  11. tallguy permalink

    This is the ugly reality of what is meant when local authority financial heads say there is no longer any space for efficiencies, there will only be service reduction or removal.

  12. Niina permalink

    Hi, I read this with interest – and it sounds like your situations is very hard. Trying to cope with little sleep is, alone, enough to drive one to the cliff.

    I don’t have any answers, but it is really striking to me how negatively the community residences are viewed in your post and those who have commented. I fully trust you know them and I am not questioning this. It is just that it surprises me as it is in such a stark contrast to my family’s experience.

    My uncle, who passed away recently at the age of 64, had considerable developmental disabilities which meant he needed 1:1 and increasing care over his whole life.

    When I was a child he lived with ‘us’ (my grandparents and my family lived next to each other so we were in and out of each others’ houses). In projecting forward to their ability to care for him when they were old, my grandparents took an opportunity for him to move to a community residential care in the early 80s. He still came home a lot for as long as he was able to (there came a point when he was no longer physically well enough to enjoy the visits home) and we visited him.

    There were challenges for sure, but I think everyone felt it was the right move and as things progressed the best thing by far. The home was a real home – and the care and support was (most of the time) excellent. The place was very nice too, with a lot of space and a garden wity easy access etc. The support was catered for each person and the family was actively involved in all care decisions. They got to know him well over the years and did things the way he liked it.

    From the beginning, one of the important things for my grandparents was that it was a real home, his home, and he could live there till he died. We came to know the staff very well, and the other residents too. It was his community.

    I am not writing this to try to sell this idea to others. But reading your post and the other comments while reflecting on our experience… it made me wonder if the idea of residential care is still a valuable one – but the execution does not live up to what it could be.

    I should add – as contextual information – my experience is in Finland, and the residential care home is ran by a national charitable trust dedicated to advancing the rights of people who have the combination of hearing and visual impairments. The people living with my uncle had a wide range of other impairments too (e.g. neurodevelopmental disabilities).

    • Nothing wrong with the IDEA of supported living – if it is what people choose, and if it is done well. Would you choose it for yourself – or would you prefer to be cared for by people who know you well and care about you, in your own home? Our point is that real choice and flexibility is missing; what costs least is too often the deciding factor.

      Nothing wrong in theory about ATUs, either – if they provided assessment and treatment that worked. The reality falls short fairly often.

  13. And …….. What happened to ‘Valuing People’, ‘Your Life Your Choice’, ‘Think Local Act Personal’ etc. etc. and all the money that was thrown into creating all those lies!!

  14. Sally permalink

    Mark, will your request be going to Panel still? If so, was this converstaion more like a heads up-“they’ll never do this, they’ll instead offer that.” I’d really make it clear that you will refuse what she suggested and will be expecting the Panel hearing.

    I have had many such conversations with social workers. I am never sure whether they are alerting me or if its an attempt to put me off pursuing whatever it is. I have also feared that the conversation I am having will be reported back as me agreeing to a lesser offer.This has happened before. “How is my request for X for my son going?” “Oh, did you still want X?” “I have it here that you have had it explained that Y is best and have agreed.”
    So my heart sinks when a social worker says “Oh, you won’t get so and so” before any sort of formal process.I wonder if they want to get out of a formal refusal which would have to have grounds which can be challenegd.

    It seems you have a strong case. 1:1 which is Steven’s assessed need is not 2:9. If they had supported units offering 1:1 that would be different.
    Niina’s description of the Finnish units sounds terrific. I don’t think there are many parents who would reject good supported living at their young person’s level of need-we know we aren’t immortal. Its just that it is often so terrible, and we don’t often trust that what is on paper will be there-or will be maintained.

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