Limits and horse-shite

Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

Choice and autonomy my arse

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 goodThe 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?

Sunshine, support and fluffy dogs

Old social worker: So I think if you are hoping that LB will eventually move into supported living, he needs to get used to staying away from family…

Adult social worker: Well there’s always respite at Saxon House.

Me: Mmm.. I’m not sure he’d want to go there for respite.

OSW: Oh no. Definitely not. [laughs] He hates ‘the disableds’ does LB [laughs]. He is hilarious. You haven’t met him yet but he comes out with the funniest things. [starts crying with laughter] He sat there, looking at me last time and came out with these one liners. He is totally comical…[wipes eyes]

ASW: Well there’s always Camden. That’s run more like a hotel than a respite centre. It’s like walking into a hotel and it’s all set up like a hotel. There’s a couple of them locally and I think there’s one at the seaside. And actually, you’d be surprised how many people don’t see themselves as disabled.

Me: Wow!!! Camden sounds amazing.

OSW: Oh yes. A hotel? That sounds right up LB’s street.

ASW: Well it’s all about choice these days. You know. Personalised budgets and choices.

Me: [floats off into some imaginary space full of sunshine, fluffy dogs, support and services]

Clients. And the learning disability fug

Some people may think I’m disproportionately enraged by what I’m about to recount. They may raise their eyes to the ceiling and think ‘What a bligey old fuss about nothing. Get over yourself lady’.* Well sorry, but I think they are wrong. It is important. And the mundane context makes it all the more important because of what it reveals.

So. I went to collect LB from his after school club this evening. This is now run by the Guidepost Trust, a registered charity that supports a range of people. On their website they state;

In all our projects and services we start from the view point that every person is special and deserving of dignity and choice and this ethos runs through the Trust.

Now, I don’t have a particular beef with the Guidepost Trust at all. I don’t think (or I don’t know if) they are any better or any worse than any of the numerous charities that provide similar services. They all spout the same sort of stuff, about person centred planning, choice, autonomy, and so on. They all have the same sort of websites, leaflets and so on. It all becomes a bit interchangeable really.

But anyway, back to today. I rang through on the internal phone for someone to bring LB out. (Yep, you don’t get to go into the after school club to collect them, they are escorted out, but that’s another story). While I waited in the foyer, I looked at the new display that had gone up on the noticeboard, with various bits of information. The after school club laminated timetable stated;

3pm: Clients are brought across from the primary school.

Clients? Clients??? From the primary school??? I can’t convey how wrong, and crushingly depressing it was standing there, waiting for LB to appear, looking at that sentence.

Why am I so upset, angry, depressed, furious and outraged by such a tiny sentence? Because it demonstrates the shallow, meaningless, ultimately pointless attitude social care services (and broader) have towards learning disabled children and adults. It highlights the way in which disabled children are effectively institutionalised from such an early age. There have, on paper, been huge shifts in policy and provision since the 1970’s and the move from residential to ‘community care’. The introduction of the concept of person centred care, direct payments, Valuing People, etc, etc, etc, etc, etc. But for the bulk of learning disabled people, life remains pretty much as constrained, managed, exploited, abused, and perceived as worthless, as it was before the likes of the late Jim Mansell, and others, started to instigate change.

Ten years ago, David Race, in the introduction to his book – Learning Disability: A Social Approach – wrote;

I am struck by how many of the themes covered by the thesis cited at the beginning of this chapter [his PhD thesis on the historical development of service provision from the 1970’s] still remain. Congregation, segregation and devaluation even in the midst of community life all remain. Public fear of the ‘otherness’ of learning disability, stoked up further by a public media that seems unable to take a broad view on any issue, has left people in probably as vulnerable a position as thirty years ago when the scene was dominated by institutions.

Well, that still stands as far as I can see. And with the introduction of the Welfare Reform Bill, things can only get worse. Underlined by structures and processes that are steeped in meaningless rhetoric with no authentic engagement with the lives of learning disabled people or children. That no one involved in producing the after school club timetable could actually see outside of the learning disability fug of prejudice, lack of awareness and a carelessness (possibly created by attendance on relentless ‘professional’ courses) to suggest that perhaps ‘clients’ should be replaced with children or kids speaks volumes to me.

*I’ve left swears out of this post, even though they are pinging around my head, because my old ma keeps telling me to send these posts on to our MP (and he would be a bit put off by the colourful language). 

The T word

I’m seriously starting to hate the T word. Trans-fucking-ition. Professionals (teachers, social workers, clinicians) drip it into conversations with big nods and concerned faces.

“We need to talk about transition,” they say, before disappearing out the door.
“How old is LB now? Mmmm…
nearly in transition then.”
“I’ll make an appointment around seven months before his 18th birthday, so we can really start to discuss transition. But you should be thinking about it now.”

OK. I’m thinking. Think think thinkety think.  Er. I’m struggling a bit here. What am I actually supposed to be thinking about?

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The cone of shame

Today I’m wearing the cone of shame. And it’s only 10.15am.

The direct payments police came round to ‘help’ me with my returns.

Now what does this mean? Direct payments? Returns? This… for those of you who are not familiar with this area, is about our CARE PACKAGE.  LB gets funding to cover the combination of services he is assessed to need.  So we get this funding in a dedicated bank account, use it to pay for someone to look after LB, and have to fill in forms accounting for what is spent, the interest earned and so on.

This is the bit I’ve failed on.

And this is why I’ve spent the last hour sitting at the kitchen table while some man in a suit has filled in the forms for me, while glaring LOSER at me every few seconds.  After highlighting the bits I have to sign with an enormous yellow highlighter pen AND a big biro cross, we are done.

“Oh, just one more thing Sarasiobhan, you loser”, he said. “You need to take out employer liability insurance. It’s £99 a year”.  Another form. Another swipe with the highlighter pen AND a big biro cross.

It’s over.

I walk him to the door.  “You do realise our care package is for four hours care a month?”

“Yes,” he replied.

“That is £40 a month.”

“Yes,” he said, and walked over to his car.


I shut the door and go to file the paperwork neatly.

Postscript: I made that last sentence up.