Moanfest

[ladybird]

Yep, I'm having a moan.

After Winterbourne and others similar there was quite rightly a backlash about centres of it's kind.
I take on board everything about it, the distance, the wicked sadists that passed for staff and agree that there is too much of the out of sight, out of mind mentality.

I received a emailed newsletter from the association that supports those with my daughter's condition, in it was a link from the Challenging Behaviour Foundation and their campaign to get assessment and treatment centres like Winterbourne closed down and transferred to "local services".

I understand the reasoning behind it, I really do. But what about the centres that are not full of masochists, those who take time to make a proper assessment and who do a good job for those who don't fit in anywhere else?
I do have a bit of a gripe with the CBF who state that they equate severe behavioural difficulties and challenging behaviour with severe learning difficulties, something that smacks of pigeonholing and prejudice in my book. What about those with mild learning difficulties and severely challenging behaviour, where is their support..or are they not deemed to need any?

My daughter has only mild learning difficulties yet her behaviour has proved so challenging it could not be dealt with in our locality, nor the specialist placement she moved to last year - and they are supposed to be the experts.

She is in a hospital for people with learning difficulties and severe challenging behaviour and has been there nearly a year. She is flourishing, emotionally, socially and with her behaviour and skills.Her medical needs are also looked after. It is proving to be the right place for her but if the CBF had their way, it would not exist. What would happen to people like my daughter then, those who appear to be more able than they actually are?
In our borough if you have SLD you get the lions chunk of funding with many activities etc laid on, MLD you get very little as it is assumed there are few, if any, other problems. You are capable and therefore should be a) at college or b) doing voluntary work.

Nothing like a good bit of positive discrimination

I disagree with vulnerable people being sent hundreds of miles away from their families.
I disagree with the scenario at Winterbourne and others like it.
I disgree with the fact that when the whistle was blown, CQC did nothing.

But I also disagree with the assumption that one size fits all and that all assessment and treatment centres should be closed without exception. Kind of reminds me of the "care in the community" scenario of the 80's in Mental Health. Brilliant for many and an unmitigated disaster for those who could not cope and found themselves without the services that they needed because institutions were politically incorrect.

Moan over.

[charles47]

It's called making assumptions.

Yes: a lot of these Winterbourne-style places are very poor and no better than the hospitals they replaced. But much of the reason for that is complacency. And wherever you provide a service, that will be the issue more than anything.

The complacency that says "we don't need...." or "we can cut this...." or "of course they don't understand...". The complacency that allows people to avoid doing their job because it's too hard to do properly. The Winterbourne View report reeks of complacency. And the complacency continues: the Chair of the Safeguarding Committee that did such a poor job decided not to resign but to "get on with the job" of correcting what had gone wrong before because they had learnt their lessons.

Really.

You mean, they learnt to change an ingrained habit? They learnt to do their job properly after years of going through the motions?

Local provision in the community is great - when it works. But there are some people who need a little time elsewhere first to help them get back on track: local treatment units don't have the capacity to do this.

Then there is the question nobody wants to touch: how many people go for positions of power over others for the express reason of being able to exercise that power? And what do we do about that?

[bowlingbun]

You have touched a really raw nerve with me. My son doesn't fit neatly into any pigeon hole either. I've always struggled to get him what he needed, even appealing successfully to the Secretary of State to get him the education he needed. He went to a wonderful special school which tamed his hyperactivity to a great extent and always treated him with huge dignity, compassion, and respect BUT they wanted to take over his life completely, and made out that because he was a day pupil rather than a boarder he was missing out (instead he was going to a steam rally almost every weekend in the summer with out steam engine and having a wonderful time). He's now living an isolated life in the community, living alone a lovely flat, he can look after it well, beyond my wildest dreams. However, poorly motivated staff are gradually ruining everything. Told they could spend an extra £50 per weekend on special days out, they took him shopping at the local centre! My eldest son and I are now resigned to the fact that the only way he's ever going to have a half decent life is to let him come home alternate weekends forever - not what we wanted. I'm in a no win situation, the more I complain, the worse it gets. I posted a dossier of information to the Ombudsman yesterday, and likened my problems to those of Winterbourne View. No one wanted to know, everyone who should have listened to me decided not to, not the care agency, not the care manager, not CQC, no one. My biggest complaint related to the management of my son's finances. Each week, the money sheets should record 10 standard things, date, money in, money out. Reviewing 3 sheets, they scored 0 out of 30! At the moment, the general theory is that big places are all bad, should all be closed down. That having small places, small homes, individual care in individual homes will sort everything out. It's all far, far, more complicated than that. Paying peanuts has always bought monkeys. Care is still generally perceived as what you do when you can't do anything else.

[Melly1]

It all boils down to the fact that one size does not fit all.

IF the right provision is available locally then that is of course brilliant, but if not it is better to fund a placement further away that offers the expertise required. Closing down all residential care and hospitals is not the solution especially if there is nothing equally good or better offering the same service. There needs to be a wide range of choice.

I don't agree with the Challenging Behaviour Foundation definition of SLD either - I teach children with SLD and we aim to teach as many of them as possible to feed and dress themselves, to be toilet trained if at all possible and to develop their cognitive, communication and social skills. Despite our best efforts, a good percentage of them lack good enough communication skills to negiotate, explain, reason and as a result challenging behaviour can occur. It is often the more able of our pupils who get frustrated and challenge.

S is cognitively not SLD, but his level of communication falls into this category and that coupled with his autism leads to frustration and challenging behaviour ... another one who doesn't meet their definition.

With all this talk about individualisation and individual budgets - what's the point if there is only one service out there anyway?

Melly1

[bowlingbun]

Most labels reflect what a person cannot do, not what they can. Personalisation sounds good in theory, but the best service is never the cheapest, and a very short term view is taken. For people with speech and language difficulties, most of the time the caree does what the carer wants to do, not the other way round! My son is repeatedly taken to the shopping centre 10 miles away, but buys absolutely nothing. He hates shopping, but clearly staff don't!!!

[Lazydaisy]

BowlingBun, staff know better than to take my son out shopping,especially female staff.One female support worker went into a ladies clothes shop with him,and he was bored so he amused himself by looking at the lingerie and holding a pair of black lacy knickers up above his head,calling his support worker across the shop asking her if she was going to be buying them as they would be sure to suit her.

[bowlingbun]

That's great! Serves her right for taking him there in the first place.

[Melly1]

Lazydaisy that is so fab. I hope she was mortified and learnt her lesson.

Bowlingbun that is disgusting that they make your son go shopping when he doesn't want to go. If he had a symbol choice board of places he really did like to go, would he be able to use that to request where he went? I know you are meant to be taking a step back, but could he plan what he wants to do over the next fortnight when he comes home for his visit?

Reminds me of a recent trip to Matalan and a bus of people with LD sat outside ... I guess the care staff were inside doing a spot of shopping.

Melly1

[bowlingbun]

I have another review/planning meeting on Monday, and I'm going to insist that management take much greater control over what my son does, and does not do, especially during weekends. They keep saying it's up to M to chose what he wants to do. Because of his brain damage, he finds opting for something he hasn't done before difficult, he needs staff to plan something for him - he loves travelling and his home is only a mile away from a coach company which does a lovely selection of days out which would be perfect, but they never arrange it. His idea of a good day out is a trip to Preston and back in a day, which used to do regularly, round trip 500+ miles! When his dad was alive he'd often ride in our vintage lorry towing a steam engine, round trips often 100+ miles. His home is surrounded by a National Park, he has a bike for himself and a brand new bike for staff which they chose, but these sit unused in his garden shed. He can drive, when at a farm college he gave tractor driving demonstrations but his concentration and inability to read means he'll never have a licence, but he'd love a quad bike experience. He's got a disabled bus pass, where a companion goes free - seldom used. Instead staff use their own cars and charge travel at 40p per mile - so each trip to the shopping centre costs about £8. When he left college, he had brilliant care for a while, until the couple who ran the service retired, so I know what is possible. They arranged so many wonderful things that M would often say he couldn't come home because he didn't want to miss out on something, sometimes he'd only be home once a month in those days. The good news is that I'm currently dealing with the head SW for LD in the County, mainly over something else, he's keeping a close eye of developments.

[Melly1]

Hope the meeting goes well. Perhaps they need to look at staffing at the weekends too - pair him up with carer workers who enjoy a good bike ride/ visiting new places/quad biking etc For some carer workers that would be their dream job - doing something they enjoy and getting paid for it.

melly1

[bowlingbun]

The staff include two former policemen, one took my son on a 10 mile bike ride which they both loved. He's the perfect role model, fit and slim. I've written to make a formal request that one of these two supports my son at the weekend, instead he gets females, one of whom has a back problem and can't walk far, another is significantly overweight with her own mobility problems. Your message was a welcome reminder that I need to include the calibre of staff on my agenda list, so many thanks for your message. The meeting is planned to last an hour, but it's going to over run! I can't see the point in me driving a total of 30 miles and only getting through half the agenda.

[Melly1]

How did the meeting go Bowlingbun?

Melly1

[bowlingbun]

Hi Melly,
It went really well! The Care Manager's boss took the meeting, he's the one shining light in all this, if only everyone else was like him. The Dom. Care manager's boss was also there, he's new in post. I had the impression that she was trying to prove to him how good she was, but was actually doing quite the reverse. It's now been formally agreed that if my son goes to the shopping centre without needing anything, the dom care manager is personally going to be held responsible - she has a habit of saying she doesn't know if I raise anything like this, when of course she should know, as she's the manager. She tried once more to say how difficult it was to do the weekly money sheets - and was told that she was paid to do them properly. If she didn't know how to do it properly, then she must ask the accountant they employ. Further meetings are planned for September and October just to keep an eye on things. At last things appear to be moving in the right direction. it's no longer me complaining, dom.care ignoring me; it's now the County Council ensuring a good standard of service. I "celebrated" by painting the outside of my garage this afternoon, to get rid of the stress; so now I've had a hot bath, to ease my aching back and will hopefully sleep like a log.

[Scally]

Tower Bridge with Olympic Rings

Artworks at Dulwich Gallery

Bond. James Bond. Now all we need is Moneypenny, LOL!

Lots of food for thought in this thread, and it isnt a "Moanfest" at all, it is a sophisticated and very articulate discussion by people who know exactly what they are talking about - true experts. All of the points made so far are spot on.
We've had a good summer so far: my son Jordan is 18 and has been on holiday from college since mid June and goes back at the end of August.
We have been sailing on both East and West coasts as well as spending a week sailing along the Great Glen from Ft William to Inverness, with paid and/or volunteer young companions.
We spent a week at the Edinburgh Film Festival, attending two glamorous black-tie premieres of "Killer Joe" and "Brave" - and meeting the stars and directors.
We also spent a weekend camping at the Big Tent folk festival in Fife and saw the Proclaimers and much more.
We have visited both Edinburgh Fringe and Glasgow Merchant City festivals for music and comedy as well as attending Olympic and Premier league football.
J spent a week backpacking, hostelling and island hopping around the Western Isles with his peer-supporter.
We have just returned from a five-day trip to London, with lots of exciting cultural activities.
In between we have been swimming and playing golf and tennis - yes, its been a VERY busy summer!

And yet still not very expensive - we are still keeping within the direct payment budget which is under £1,000 per month. What's the key (OK, a disabled railcard and bus pass helps!) ? And in between I am still working p/t and earning good money.

To my mind (apart from sensible budgeting and planning flexibly) it is probably the ability to constantly think out of the box, to research new opportunities, to be creative, and to have some experience of organising or accessing cultural and sports activities and the confidence to predict what might work and what will probably flop. Oh, and the willingness to accept that there are no certainties in life and the humility to accept failure. But OK, given a choice, which Opera would you take a teenager to: Hansel and Gretel or Turandot? (The answer is at the bottom, but I only learned it by doing it)

Good service co-ordination is about accessing a very wide range of mainstream cultural, leisure, employment, training and sporting services, many of which are free, and this simply cannot be delegated to low-paid dim staff who left school at 16 and have no cultural knowledge apart from Eastenders and the X factor. Nor can we reasonably expect young people with learning disabilities to be able to make informed choices - they need to be led gently (but not forced) into the right kind of creative and learning activities by people they admire and look up to. The point is to stimulate the imagination - everything else is secondary.

PS: A: Turandot - much more fun.
Hang on ....you say you have NEVER attended an Opera? Really???? Thats a bit like saying you have never eaten a live oyster, if you want to live, you really need to get out more!

[bowlingbun]

Scally, I reckon you've just about hit the nail on the head about staff, and who makes the choices - you were'nt hiding at my meeting today were you? M will soon be transferring onto Direct Payments which hopefully will be a bit more flexible than ILF money, which can't be spent on me, although I'm his favourite carer. I've got plans for a few changes once the move to DP's is complete. Thanks for sharing the great holiday photos, must try and take some of M at the Great Dorset Steam Fair next week, his favourite week of the whole year. Allthough it's the largest outdoor event of it's type in the world, it's a really safe place for M, who has been going every year since he was born. We always take at least one bicycle, as the showground is about a mile end to end, and M loves the freedom of riding around on his own - whenever I bump into friends, they usually say they've seen him already.