Category Archives: Disability

Weaving, ducking and diving

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Just a few rambling thoughts about the latest news, schmooze and misery to emerge this week. On Saturday news broke (in the most low key news breaking way possible) of alleged ‘bullying’ at a small residential school for learning disabled children run by a provider, MacIntyre, in Wales. Saba Salman provides a summary of this story here. Abuse Bullying at any provision for learning disabled people, particularly children, you’d think would be ‘news’ post Winterbourne.

Particularly if the CEO of the provider involved is the new lead of the Winterbourne Joint Improvement Programme (JIP). But the link wasn’t made.

NHS England also published the latest dismal stats/update around the JIP. No words really. I suspect some of the people involved must be looking back and thinking “Why the fuck did we call ourselves a concordat?”

Good intentions I’m sure at the heart of this group/concordat. At the same time I’m getting a bit uncomfortable about the constant waving of the ‘Winterbourne’ flag. Particularly given the abuse and neglect identified at STATT, Piggy Lane, Evenlode and now Womaston (the latter run by a very respected provider). Consistently referring back to one particular moment among so many is a bit self defeating really. I say this without wanting in any way to detract/play down the utter horror experienced by the patients/families at Winterbourne View.

The link between Bill Mumford and the school was made on twitter on Sunday. Today he issued a heartfelt personal statement; Doing the right thing. Action has clearly been taken, the police are involved, etc etc etc. Etc with bells on.

What’s the problem with this?

Well this really:

Bill Mumford

And what this means.

And?

How long does it take to approve a personal statement about abuse discovered in March? By a concordat who, er, have seemingly achieved little else? In a timely fashion, the JIP approved the statement two days after it almost became news.

I’m confused/alarmed about the ‘power of the process’ in instances of horror involving state organisations to keep things secret. What we could and couldn’t (and can’t) say about LB’s experiences seems to be mediated by the spectre of various processes that lie ahead (the police investigation/the inquest). What this really means is a bit of a mystery really.

Now that BBC Wales has reported the allegations at Womaston, the publishing of statements by MacIntyre and Bill Mumford suggest that the secrecy aspect is a little bit contrived.

Another interpretation to the above is that there was a bit of (explicit or implicit) wishful/hopeful thinking that the link between Bill and the school wouldn’t be made. That a bit of abuse bullying at a small school in Wales would be largely ignored by the media. Not an outlandish wish in the circumstances. Again, quite possibly with the ‘best intentions’ in line with concordat aspirations. Not rocking a rocky boat and all that.

A third interpretation is that the workings of top level dealings in this area are so infused with incompetence that reaction rather than action is the norm. The old procrastination model.

I don’t know which of the above fits the Bill, if any. But I hope, if I was anything to do with a concordat (sigh), and/or head of a leading light provider and abuse bullying happened on my patch, I’d shout from the rooftops about it. To alert the whole shebang (people, families, commissioners, providers, NHS England, local authorities, social workers, teachers, support workers, clinicians, health professionals, whoever) that this shite happens. And if it can happen in my blinking state of the art (in the context) organisation, it could happen in yours.

It’s time to cut the crap, whatever shape that takes. These are people’s lives we’re talking about.

Models of disability and ‘real’ epilepsy

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Having some serious ‘what’s the point of a lot of academic research (my own right up there with a few others) thoughts at the mo, particularly given the wealth of research around learning disability provision. We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. Yes, there are pockets of good and brilliant stuff (anecdotally, largely where some cracking person or group of people have got together to just do something.) But overall, it’s pretty crap or worse.

Yesterday, this was tweeted by Chris Hatton…

costs

Whoa. Really? Really???

Half a £billion a year? For being warehoused, out of sight, on the edge of towns. Restrained, subject to abuse or other acts of violence and neglected.  Half a billion???

The Winterbourne Concordat (sigh) aimed to get people pretty much out of these hell holes by June 1st. The outrage generated by the original Panorama expose of abuse has clearly lost any welly. People have moved on, learning disability really ain’t sexy and no one with any influence is prepared to do anything. (I’m losing count of the people who mention how well we’ve done to get the publicity/momentum we have on #107days… It’s like trying to crawl out of a 30 metre deep mud pit with some cocktail sticks and a cotton reel).

Today Rich and I had a ten minute revisiting what happened to LB (various versions of this happen several or more times a day… typically underpinned by despair, disbelief, rage, intense sadness and inevitably tears). Today we focused on the consultants involved who, in their wisdom, decided to ignore, pretend or insist that LB didn’t have ‘real’ epilepsy and wasn’t having increasing seizure activity.

(This reminds me of a conversation with someone who said (after LB’s death) that she worked with children with epilepsy who had “proper seizures”.) Eh? LB was ‘medically’, ‘officially’, and about as blinking properly as you can be, diagnosed with epilepsy. (Eventually). Numerous people, us, his teachers, paramedics and A&E staff witnessed him having seizures. I’ve never seen anyone having a seizure before and I saw him having various types of seizure include tonic clonic which really is in your face seizure activity. He had epilepsy.

His sensitivity to changing medication was also known and recorded. The consultants at the unit were told that he was having increasing seizure activity, by people who knew him better than anyone. And yet they sat in a meeting two weeks before he drowned in the bath and decided he wasn’t.

In a unit costing around £3500 a week.

In some ways the cost is completely irrelevant. We’re talking about the life of a young dude who had only just nudged into ‘adulthood’. But at the same time, the enormous cost of these places contrasted to what’s actually delivered speaks volumes about the ambivalence and (maybe fear?) attached to people like LB. The cost of keeping em penned away from the rest of us is paid. Seemingly indefinitely. Seemingly without question. Even when the extent of the atrocities that happen in these spaces are known about.

And any aspect of their lives, including clear, pretty straightforward medical issues can be ignored. The ‘learning disability’ trumps all.

The disability (studies) movement in the UK has been caught in circular discussions/debates/disagreements and revisiting distinctions between social and medical models of disability for years now. Pretty tedious and dusty really. But what’s astonishing, and illuminating, is that the medical profession denied LB the right to be epileptic. They denied him his medical label.

They denied him his right to be epileptic. Because they couldn’t see beyond his ‘difference’. And this, ultimately, denied him his right to life.

Anyone got a copy of the Hippocratic Oath handy?

 

Helsinki Sunday

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I was given/awarded? earned? a ‘one off payment’ after filling in a carers assessment form. Wow. A brief letter asked for my bank details to transfer the money. Wow. I picked myself off the floor and decided to tag an extra day on to my Finnish work trip. A day and night in Helsinki. A carers break.

It was fab, fun and sunny.

Today I got a letter from the County Council asking for confirmation that the money has been spent in line with the scheme. Eh? The scheme? With receipts.

Oh.

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Comic relief day. No.

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LB punched one of his teaching assistants* in the face this morning.

Horror.

I rang the emergency number on his Care Manager’s ‘out of office’ email and was told someone would ring back. The guy called back ten minutes later and suggested a referral to the learning disability team nurse who specialised in challenging behaviour.

“Ok, how long will that take?”
“Well I’ll put the referral through next week and she’ll get in touch when she gets it. I’m not sure how soon she’ll be able to come and see him though.”
“Eh?? Have you listened to what I’ve said?????” 
“Er, sorry?”
“What are we supposed to do in the meantime, if he turns on someone else?????”
“Well, I could make it an urgent referral I suppose… Ok. I’ll put it through as urgent then. And there is a psychiatrist too. I don’t know if….”
“She.discharged.him.last.week.”
“Well I could try ringing her this afternoon.”

Thirty minutes later he rang back.

The psychiatrist had gone home, he’d spoken to the duty psychiatrist; we have to go to the GP and ask him to ‘escalate’ LB to the psychiatrist.

I’m putting it out there now, the support and services for young learning disabled people in Oxfordshire is worst than crap-shite. Unacceptable. Please feel free to pass this link on to anyone in health and social care. Or anyone really. Things HAVE to change. And not just for LB.

*Sue, who has gone about as far beyond the call of duty as you can with LB, including getting in contact with mermaids around the world and sitting around in a stinking, freezing cold workshop every Wednesday, while LB does mechanic training.

Choice and autonomy my arse

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At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

The outing

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Today was a funny day. I went to Bristol to meet two women I’d ‘met’ through Twitter, Alexa and Kate, to visit a social enterprise scheme called Props.  It was hilarious meeting people through Twitter. Eh, who? What? Where?

I chuckled as I walked through the ticket barrier at Bristol Temple Meads, wondering whether I’d actually meet them. Especially as I had in mind we were meeting at Bristol Parkway which is so much smaller.  But there they were. Freezing and big smiles. Kind of recognisable through avatars and the odd tweeted photo.

By the time we were sort of (but not really) lost looking for the Props base somewhere in Bristol, I felt I’d known them both for years. We laughed. And connected tweet snippets from past months with shortcuts forged by the experience of having less than straightforward kids. Loveliness.

But the outing was about Props. And Dave and his crew delivered. Big time. Basically it’s a space for disabled young people to learn, work and flourish. As part of the community with a strong commercial focus. We hung out with Matthew and Jethro. Matthew was hugely impressive. He worked his socks off in an understated way. Making drinks, tidying up, keeping an eye on Jethro’s work, and demonstrating a sophisticated engagement with the tasks involved in print room work. Jethro added the comedic dimension to the visit, with hilarious one-liners and an easy engagement with everyone that I would love a dose of. They both shone.

And made us some great t-shirts.

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Wowsers, I hear you say. Social services must be chucking money at this organisation.

Of course they ain’t.

Boundaries

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It’s a tough gig bringing up a disabled child. Yep. It shouldn’t be, I know. Appropriate, timely and sufficient support would make a huge difference. And a seismic shift in public attitudes. Of course these things overlap and I ain’t optimistic for all sorts of reasons that they will ever happen. But if they did, there would still be trickiness.

Take this morning. We’re in the midst of pretty dodgy times with LB and he’s booked into Parasol for four days for half term activities. A charity organising and supporting young disabled people’s access to, er, fun. Yep, it’s as simple as that.

But…

“IDON’TWANTOGOTOPARASOLMUM! I’MEIGHTEENMUM! YOUCAN’TMAKEMEGO.I’MGOINGBACKTOBEDMUM!”

Like his two younger brothers who will probably sleep/doze till lunchtime. Sigh.

All sorts of thoughts and considerations….

You’re kind of right…
We don’t want another major kick off….
You can’t watch youtube all day….
We’re both working today….

“You’ve got to go.” I said. Some ranting and raging. But at a low level. And he’s off to the Kassam Stadium for a day of bowling and cinema.

Now Parasol is an enigma to me. They organise a range of activities in and around Oxford. You drop your child off at stated destinations; outside the Playhouse in the town centre, or in the ice rink car park. Or at a local community hall. Believe me. This is seriously weird to a parent subjected to years of constrained, heavily policed and overly organised out of school child care for the ‘special needs child’.

Eh? Leaving LB at a community centre with the doors wide open, kids in the car park, and helpers running around having a laugh in squirrel onesies? Hello? These kids are runners, you know?! They’ve got no sense of stranger danger or road safety???? Hey, the door is open!!! Anything could happen. Anything! You hear me???

The organisation of Parasol appears chaotic and random.

But it isn’t. It’s run by and staffed by exceptional people who enjoy the kids, understand difference and get out there and get on with it. With impeccable leadership. And, in doing so, they allow some freedom, independence and fun for this group of young people.

Anyone who takes LB, and ten or more other young dudes, to watch Les Miserables (at an ‘ordinary’ showing) is cracking on in the right direction in my book. We all just need need to catch up with them.

Carers Assessment? No. Groundhog day

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This weekend is officially a catch up weekend. Beyond boring but necessary. I started this afternoon with a mountain of paperwork and a canny system of ‘bin it’, ‘deal with it’, ‘park it’. The ‘deal with it’ pile had the carers assessment form on the top. Oh dear. Regular readers will know that this (mythical???) assessment has been dragging on for years. The form in front of me was different to the version I failed to fill in before (because it was beyond inadequate). I sat at the kitchen table, determined to fill it in.

So ‘caring’ is divided into ‘practical tasks’, ‘personal tasks’, ‘mobility’, ‘getting around’, ‘health’, ‘communication’ and ‘other issues’ (including mood swings, anxiety, aggression and so on). Each section includes a list of things to tick (‘communication’ has support with socialising, advocating, and interpreting) and a section for ‘carer’s views’. I ticked all the relevant boxes (most of em) but wasn’t sure where to start with my views. What does it mean?

“I’d hoped LB would be able to go out and about by himself but now, but suspect he ain’t gonna be able to do that for the forseeable future.”

“I find it pretty rubbish supervising an 18 year old boy in the bath.”

“It’s all pretty fucking shit really but it could be so much better if I knew that adult services wasn’t a big hole of crap-all.”

Anyway, I left the ‘carer’s views’ sections and got to the end of the form. Only to find this little beauty:

This form is the first part of a Carer’s Needs Assessment. Would you like a full carer’s assessment to be undertaken?  Yes?  No?

Now I don’t know who is coming up with this crap, and I don’t know what the intention is behind it. It’s obstructive, ill thought out, insensitive, meaningless and time consuming. I don’t know how many meetings I’ve attended thinking I’m ‘doing’ a carers assessment. Or having a carers assessment done to me.

When I started sorting through paperwork today, I was struck by how LB had his own folder of paperwork bursting at the seams. No one else in the family has a file really. Just general stuff. Why is there so much paperwork around certain children/adults when the outcome is less than acceptable? A ‘special needs industry’ exists in the UK with a wasteful, usually ineffectual and pointless focus. But embedded within that industry is a level of tyranny. That these are hoops that parents, carers and disabled people have to jump through. Regardless of outcome.

Over 15 years into this gig now, I’m going to say now, I seriously hate it.

Can we have  transparency, honesty and realism about what is what? And what is likely to be what in the future?

Celebrating segregation?

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I ain’t surprised that only 35/1000 ex-Remploy workers have found new jobs, despite the 18 months of ‘individualised support’ offered to them by Maz Miller. I can’t imagine the impact on those 965 unemployed people (and, as importantly, their families). Of losing that structure, social dimension, coherence, and wage. I dread to think how it will affect their sense of self worth, isolation and health. Especially with alternative employment looking an impossibility. Anyone who talks about ‘benefit scroungers’ is talking crap. Apart from a small minority, work is a central focus of human/social life. End of.

I don’t support (or celebrate) the idea of segregated employment at all. I support the right for people to work, regardless of their ability, and this work should be mainstream (whatever that means).  But I know that’s an idealistic and, in the current UK economic environment, totally unrealistic position.

Closing the Remploy factories was a financially driven decision. While throwaway and meaningless statements about decreasing segregation were made, it was about saving money. We are no nearer to an ‘inclusive society’ than landing on the moon, finding out what ’causes’ autism, or whether there is life on Mars. Shedloads of money are thrown at the latter two but very little is invested in workable solutions to increase and support learning disabled people in mainstream work.

Until people (learning disabled people, carers/family members, general public, policy makers, practitioners, government ministers) start to talk openly and realistically about the issues involved, nothing will change. It reminds me of my early research looking at the experiences of mothers, learning disabled children and going out in public places. I found there were limits to the tolerance you could expect from other people. The bar is commonly set way too high (for prissy reasons) but, even when lowered, some things ain’t gonna be acceptable. Until we engage with these (sometimes awkward, uncomfortable?) issues, and have some open, creative and realistic thinking about what can work and how, why force (longterm) unemployment on hundreds of Remploy workers?

Another day, another cone…

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Went to a meeting yesterday where I ended up wearing a cone of shame once it became apparent how I’ve largely ignored sexuality in my research. Evidence highlights differential health and social care outcomes for lesbian, gay, bisexual, transsexual, transgender, intersex peeps (LGBT) and yet, despite making a claim for ‘diversity’ in my sampling, I haven’t actively recruited LGBT participants.

My cone of shame was a bit bigger than usual as I’ve been looking at ways of making research more inclusive recently.  I’ve written and ranted about how we exclude certain ‘groups’ of people from studies, only actively seeking their involvement if the research is focusing on their ‘group’. We ascribe people in these groups a kind of meta-status that obscures other dimensions to their identity. Learning disabled peeps are an obvious example here. The learning disabled identity is so all encompassing that researchers (or others) would rarely think to recruit learning disabled people to a broader study about relationships or cancer or living in a rural area. (And if they do think about it, that thought can be dealt with neatly and speedily by a throwaway statement in the methods justifying their exclusion on ‘ethical’ grounds.)

So, the research community is sustaining and reinforcing exclusion through research practice. ‘Specialist’ research focusing on learning disabled people (or sex workers or asylum seekers or traveller communities or homeless people – the list is pretty extensive) can be ignored by the mainstream world cos it ain’t relevant. Instead, what is considered mainstream should be challenged through more inclusive research practice.The concept of ‘ableism’ offers some tasty insights here, as Fiona Kumari Campbell asks how the fiction of “the able bodied person” has been sustained over time when there is such variation among people? (see a chirpy and stimulating interview with FKC about this here).

Of course you can ask the same question of the dominance of heterosexuality. Discussing the current cone with a couple of people the challenges raised were about disclosure and relevance. ‘People may feel uncomfortable disclosing their sexuality to a researcher…‘ Well we ask ’em to state other ‘personal’ details so not sure why sexuality is any different. They don’t have to tick any boxes if they don’t want to. It ain’t going to be a deal breaker. ‘Sexuality may be less relevant in some health conditions than others…‘ Er, that is missing the point.  And so on.

But then I got to thinking that maybe cones of shame aren’t cones of shame at all. They’re cones of reflexivity which will inevitably involve uncomfortable feelings at times. It’s all part of the gig.