Losing count – around Day 90

At the moment I feel a bit beaten with knowledge of awful practice/terrible processes in the broader ‘learning disability’ world and the implications of these for people (in social, economic and health terms). Aside from research evidence, I know a lot of young (and older people) whose lives are, at best, less than adequately supported or enabled. A Facebook transition parents forum (I largely lurk on, sorry) consistently details examples of poor support, battles and misery. For example, from three days ago;

Nothing gets easier. R is suposed to be leaving school officially end of June but we have no agreed care in place (not my fault). One of the day care places (2 days a week) is having major alterations and have said they cant take him until 15 august and the other day care choice (2 days a week) doesn’t start until 31 July, so I am going to be left looking after R once he has left school on 18 July. Whilst trying to work and also caring for my mum. Jolly hockey sticks!!! They all know R is leaving school,have known for years so why people cant get their bloomin acts together and sort it for him I don’t know. Plus I have to find some part time employees to help with the other day a week and transport to and from respite etc and the bloomin paperwork. I am positively frazzled. And if I hear the words you are no longer responsible for him any more I am going to spit!!!!!

I know I keep saying this, but support is shite or non-existent. Aspiration is a dirty word. Jargon laden processes work to effectively crush young people and parents’ hopes and expectations over time until the most basic/cheap and soul destroying ‘life outcome’ – unproblematic weekly burgers and extensive television viewing [by unproblematic I mean without upheaval or disruption in care provision/budgets] – become the default (or even sought after) position. The independently supported no-life. I’m calling it a life outcome rather than lifestyle because the latter implies some choice. And really, this isn’t about choice. An outcome of the burger/tv existence is, of course (these things ain’t rocket science), the health inequalities detailed in Emerson’s depressing read (and countless other reports).

We took LB for an Indian buffet again today. He was cheerful, very chatty (well largely to himself and, unfortunately, with the waiter*) and ate numerous plates of nosh. He bounced down the Cowley Road after to Honest Stationery and Tesco for some shopping. His good mood disappeared the split second he realised it was time to go back at the unit. (Though he managed not to punch himself in the face today).

He wants to come home. We want him to come home. But now we’ve had a break from the pre-unit experience of cobbling together after school cover – through daily shuffling of commitments and working late into the evening (and trying to ineffectually defuse anxiety) – we want effective support in place first. Not a big ask? Nope, you’d think not.

But what has also emerged loud and clear through the knowledge we’ve gleaned from various sources (most importantly experiential sources) is that not only is there a paucity of support options forget aspirations, silly, but once any form of ‘support’ is in place, possible alternatives disappear. One friend spent six years trying to move her daughter from an inappropriate supported living space, nearer to home.

I’m beginning to feel more human today after several disturbed nights this week. The Care Plan Approach meeting left me with a fear that LB would be dispatched to any available ‘room’ in any craphole provision by the social care/health machine. That he would “choose” to move to [fill in the location here] to live with his peers, eat burgers and watch tv. For the rest of his shortened through an unhealthily lived life. This fear, in some ways, works to make a ‘local’ version of this no-life infinitely more appealing.

I’m beginning to think that our experiences of learning to live with a vibrantly different child (in good and sometimes not so good ways), that originally sparked the writing of this blog, have been transformed by the sledgehammer experience of “transition”. The equivalent of some kind of crap horror/slasher low budget film that you can’t wait to switch off. If you have the choice.

*Unfortunately given his new 1970’s type sit’com’ type Indian accent in asking for his coke.

The Unit. Day 67

Bit of a gap in posts for various reasons, none of which relate to LB. For once. Anyway, LB’s life is currently reflecting Candy Crush. Groundhog day at level 125. [Yes you Candy Crushers, suck it up.. it’s a therapeutic tool for me at the mo’ and getting to 125 has taken many, many night time/early morning hours. And I’m STUCK]. The choice offering is interfering in LB’s (non) school attendance. Decisions made in the weekly community team meeting about going to the farm to work are sunk by him being given the option to say ‘no’. So he’s been unit-bound since the buffet lunch last Sunday.

Not a big surprise really. Give any teenager the choice of school/work or doss off, most would choose the latter. But most teenagers aren’t offered that choice. And most would eventually realise that they have to do something productive. The adult space opening to LB is looking alarmingly like a version of day-centre-life.

I’m sure I’ve mentioned an article about an Oxford based learning disabled man’s (Rob?) long term experience of a day centre that was in a Sunday mag years ago. Rob? said if they finished their task of sorting screws (or whatever it was) before the end of the session (probably around 3pm), the staff tipped the trays out so they could start again.  The futility of this activity was piercing. The article could have been (I wasn’t as up to speed in those days) heralding the increase in self-advocacy groups and advent of direct payments as I think Rob? went on to be an early member of My Life My Choice. These developments were great but we all know (well those of us who look at reality rather than the rhetoric *cough cough*) that this shift has been largely superficial. There are the lucky few  who have fallen into an exceptional (but still cash strapped) social enterprise or individual setting. Most are unemployed, unfulfilling any potential they have. Eh, what’s that? Remploy? How many ex-Remploy employees have found new jobs? Naw, let’s not go there…*

I think introducing choice has erased discipline for young dudes like LB. The number of injunctions he took out against the dishwasher, as his allocated family task, was hilarious, but the job got done. School similarly have been easing sixth-formers into working environments, trying to help them understand that work is a part of life. But once you take that discipline away, you’re left with yawning space to fill. With DVDs, trips to the shops or fast food restaurants and hanging around.

That’s it for now, really. Unless anyone has any hints about cracking level 125 ?


* http://www.guardian.co.uk/society/2012/nov/23/remploy-workers-new-jobs-labour

The outing

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.




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

Of course they ain’t.


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.



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.

So to the future..

I’ve been trying to avoid thinking about this, because the future does not look rosy at all. But it’s gotta be done.

The facts:

  • LB is 17.5 years old.
  • He can stay in his sixth form until he’s 19.
  • There is a possibility he can attend a local college for a one year, two day a week, course.
  • After that, nothing.


  1. What is this funny, hugely bright in some very specific ways (but not in any ways that are recognised in the workplace), young man going to do with his life?
  2. Whose is responsible for his care when he’s an adult?

I dread to think what LB is going to do. His current social worker (soon to be replaced by a transition social worker) said that the best we can hope for, is to make personal contact with a local small business/enterprise and organise paid carers to support him in some activity with them. Wow. The provision of support and services for learning disabled people is clearly cracking in the 21st century. I can’t see how this local work activity (if any were available) can be organised without a huge investment of time and goodwill. Whose time and whose goodwill? And with a high level of ongoing management. Alternatively, he may receive enough of a care package so that we can employ someone to do something with him on a daily basis. Something? What? And where?

Caring for someone in this country is, to be blunt, a pile of crapshite. The use of the word ‘care’ muddies things and allows a persistent level of exploitation that is completely unacceptable.  Carers are paid £58.45 per week on the basis of a 35 hour week. How we can possibly distil the work carers’ do, often 7 days a week, on call for 24 hours a day, into a ‘working week’ is plainly wrong. If you earn over £100 a week, you don’t qualify for carer’s allowance. It’s an all or nothing jobby. And as for carer’s assessments (introduced circa 1995) to enable carers’ to say what would make caring easier for them?? I’m still waiting to have one.

Ironically, LB will probably (possibly? who knows with the current cuts in welfare) be given a care package involving direct payments that, in principle, allows him (that is, us) to buy care from external people. These people are currently paid between £7 (daytime) and £10 (evening) per hour. Unlike informal carers, there is a recognition that working in the evenings should involve a higher hourly rate. The rule is that direct payment cannot be paid to anyone living in the same house as the person they work for. Mmmm. Well we wouldn’t want to acknowledge the work informal carers do, would we? Direct payments also involve a lot of bureaucracy, recruiting staff, form filling in, tax, national insurance, and so on.  Employing people involves time, interaction and a blurring of public and private boundaries in the home.

As I work full time, I don’t get carer’s allowance. There is no acknowledgement of the work I/we do, and will continue to do, looking after LB. There is no recognition that, unlike most parents of 17 year old children, one of us still has to be at home every day, ready to let LB in or collect him from after school club. This will continue for the next two years until he leaves school. And then what? He will, if lucky, be occupied two days a week at college for a year. No doubt starting around 9.30am, finished by 3pm with extensive holidays thrown in. He can’t be left home alone, so there are serious implications for maintaining full time employment.

I’m not overly optimistic about the paid carer situation. LB’s recent 12 week stint with a ‘peer buddy’, organised by a local care agency, was filled by a 50 year old man. At this point in time, I refuse to even think about a day centre. Years ago, LB used to say that he’d been to day care with Mr Galpin. It turned out that the social services transport he had at the time (the ill bus), collected a very elderly man after LB and they took him to the day centre before taking LB on to school. The thought of a 19/20 year old young man hanging out in that environment is a beyond dread kind of thought. It ain’t gonna happen.

So what are we left with? Fuck all really. Patchy bits of uncertainty and an unacknowledged expectation that parents will do a hell of a lot of work to make do and mend, on a daily basis. As for what LB will do with his life? That clearly is not an important feature of policy or practice.