Transition (a steady descent)?

Here’s a photo I love of LB  at his last but one residential school trip in Devon. The one before last week when he had to be collected at a halfway point on the motorway, half way through the week. Because he was distressed, anxious and lashing out at a staff member.

OLYMPUS DIGITAL CAMERA

I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. It’s probably a mangled combination of both.

I don’t understand how we allow (stop? prevent?) this descent. This change from a reasonably happy dude to someone who finds themselves at odds with life. The circumstances around LB’s current anxieties are, at the same time, specific, random and seemingly  ‘irrational’. So difficult to understand and make sense of.

Lashing out at people, and demonstrating intense upset is hugely upsetting for everyone involved. It’s happened sporadically (but memorably) in the past, but it’s uncharacteristic for LB to be so consistently unhappy. He’s pretty much had a much loved role in our family. He’s happily bypassed years of bickering, fights, wanting to win, score, or just be heard. He’s always occupied his own space, peppered with youtube and Eddie Stobart (and, thankfully in the past, Keane). For the last couple of months, he’s been unreachable, different, anxious, unpredictable and unhappy. And fucking irritating.

I was kind of pleased the GP today resisted referring LB to mental health services. He said it was medicalising a problem that wasn’t medical. I agree with that. And appreciate his refreshing approach.

But how do we stop the descent. How we get the happy surfer dude back? And who will help. It shouldn’t be like this.

LB’s support plan

So the dreaded visit from LB’s Care Manager passed off painlessly today.

LB sat very patiently while she gave information, apologised for using jargon and went through his support plan. Then she got to the big question:

“What three things are most important to you in your life?” [these can relate to any aspect of your life – aspirations, outcomes you wish to achieve or things you are keen to maintain or be able to do again.]
[silence]
“LB what things are important to you? …”
[silence]
“What is important to you? It can be anything at all… Have a think…Is it your mum and dad? Or your family?”
[silence]
“Can you think of one thing to start off with?”
“Bus spotting.”
“Ah. That’s good. Can you think of anything else that’s important to you?”
“Lorry spotting.”
“Brilliant. One more thing…”
“Coach spotting.”
“Fantastic.”

A fledgling plan

Ok. I’ve been thinking about this for a while now. But only in short bursts. I thought if I start to document these thoughts, it may a) give me a kick up the backside to explore it more fully b) contribute to discussion/different ways of engaging with young learning disabled people and c) maybe get some tips, experiences and links.

So, LB is 18 in a few weeks. He is very funny, hard working and sensible (in an unusual way) with some serious interests around transport, recycling and justice. “Transition” so far has been pretty shite as I’ve documented. The future is not looking bright.

The facts as I’ve gleaned them (not easy); He has one more full year at school after this one. After that, he will be entitled to direct payments to create support for him.  What this means is not clear. There’s a chance of a further year at a local college to learn (more) life skills. Given that his sixth form are currently doing a cracking full on job of teaching life skills, I’m not sure that there is much point in an additional year. Well other than to occupy his time. After that, it’s day centres (shudder) or a life of being taken into town to go to the cinema, bowling or hanging out at home with a paid carer.

The fledgling plan..

To set up a small social enterprise scheme; get a loan, buy a small van, a mobile industrial shredder, employ a co-ordinator and run an odd job business. The odd jobbers. The idea is to draw on the strengths of LB and other young people and celebrate diversity/eccentricity. LB is an attention to detail kind of dude when pointed in the right direction and encouraged to stay there. Other young people I know have an infectious joy in meeting people (though not always joyful to their parents) and interacting, strength, humour, an ability to hang out cheerfully and other skills. The plan is to create a community presence where the odd jobbers become known about locally. People, and local businesses, enjoy the service they offer on a social, as well as financial, level. Driving round, collecting shredding, or bits for the dump, small deliveries and so on. Creating employment (for however many hours a week) and the associated benefits (productivity, achievement, activity, purpose, structure, pay and a social life) which is priceless.

There are enterprises that are doing similar type work across the country. I was pointed in the direction of Props who offer brilliant opportunities for young people in the Bristol area. But there are layers of hoops and bureaucracy to negotiate as local authorities interpret what direct payments can be spent on very differently. We had a taste of this when LB went on a “summer holiday” with a few other young men, funded through direct payments, only to come back with an extensive learning log. Oxfordshire county council insist learning outcomes are attached to funding. Props have had to create an accredited course for their enterprise. Choice and autonomy within a personalisation agenda? Forget it in practice.

These are early thoughts. It may be a vague, unattainable, undoable daydream. [Like my decluttering intentions..cough cough]. I’ve no idea how it could work in practice. But it feels better to think in terms of action. And involvement. Rather than just letting things pass by.

The letter

So, we get back from a nice weekend away, with the sun still shining, and there’s a letter from LB’s Transition Care Manager (ASW).

I am writing to confirm that we have been successful at panel and that your indicative budget is xxx per week or xxxx for a full year. I understand you wish to receive the budget as a direct payment and manage the account yourself. I enclose a support plan that needs to be completed before any money is released. I’m happy to start the support plan for you as a draft and then we can arrange to meet to discuss any questions you may have.

Well, I have quite a few questions.

Kicking off with who is the we? Given ASW has never met LB*, I’m not sure who it refers to?  I’ve met ASW for about 20 minutes in total and she ain’t ever met LB, so seems a bit too familiar for my liking.

And why were we successful?  Was there ever a question mark over the need for an adult care package? I find it pretty offensive really, suggesting we somehow won something. Or is this a (waste) product of current government welfare reform. WE have been successful in the wider context of cuts. Great.

What is an indicative budget? If these terms are going to be used, they should have some sort of explanation or it is meaningless (and frustrating).

Is this budget for just the period while LB is still in full time education or indefinitely? If the latter, does that mean that LB will have his case closed once this care package (xxx a week) is in place?

And if yes, how the fuck are we supposed to manage our lives, with full time jobs, around the equivalent of 10 hours a care week?

That’s it really. I’m not going to bother repeating the way in which careless, jargon filled communications like this are experienced.

Transition really is shit.

*I know.

The adult service

Realised I’d double booked myself for this Friday and had to cancel a visit from LB’s new social worker. The adult social worker. I then realised that a) I didn’t know her name and b) I didn’t have any contact details for her. Other than ‘ASW, Friday morning’. “Hey, crap bollock”, I hear some of you shout, “Why didn’t you write down the details at the time?”

I dunno. But I’m not sure it’s my responsibility to fact find in this situation.

When I met ASW, with LB’s current social worker, a few weeks ago, it was a pretty underwhelming situation. Chittering on, as I filled the kettle, I lightheartedly mentioned that LB said he didn’t want to meet her.

“Well,” she said, bristling, “I am his future.”

We sat at the table for ten minutes, having a forgettable chat (well apart from the bit where she defended A4E’s performance in the local authority). And made an appointment for Friday. I’m not sure what the point of the last meeting was, or this one because nothing is made clear. But I obviously needed to reschedule.

I emailed LB’s existing social worker. Asking for ASW’s contact details (and whether  she remembered her saying she was his future). I got an email back, ignoring my second question but stating the following;

  • Adult care manager is ASW, you can email her on xxxx. She will be his care manager when he transfers to the adult service. Once his care package is up and running she will then close to her. However he will remain open to the learning disability team. If you require further support after the closure to ASW then you just contact the team and they will re refer you to a care manager that is more than likely be ASW.

Eh? Sorry, but what does any of this mean? Is this social care speak? Are there some missing words? What does ‘close to her’ mean? And ‘open to the learning disability team’? What does that mean??? And why all the jiggerypokery if the outcome ‘more than likely’ is  always going to be ASW? What does any of it mean???

And why are you emailing me this crapshite piece of opaque, insider, meaningless jargon when I’m terrified enough about what the future will be like for LB?

Beyond shunned, trust and what?

LB’s now been back from his five day PGL adventure for three days. And all we know is that he was ‘shunned’ by the boy he shared a room with, he went abseiling and ate chips. He says he had a good time. He says his room mate scared him. He says he had to sleep with the light off, which also scares him. He says he doesn’t want to go again. But then he didn’t want to go in the first place.

Oh, and I also know there was a ‘staff change’ on the Saturday in the middle of the trip.

This was LB’s first ‘adult’ holiday. It was organised by a care provider company who seem to have a good reputation. As I wrote earlier, there was no choice involved. We haven’t been shown any evidence of the ‘quality’ of this company (or any other company for that matter). The local authority obviously use this company but that don’t mean diddly squat. The company has glossy brochures. A bouncy, cheerful worker does home visits and gets the forms signed. A cheerful woman picked him up and dropped him off. There is a cracking performance of bright, breezy and cheerful. But what do we really know? There’s that screaming question; Why should we trust you?

Maybe I’m being overly protective. Maybe LB went off, had a great time and loved every minute. I hope so, but that’s not the point. It just ain’t good enough. I know, historically, learning disabled people have had a crap deal, but the current context of Winterbourne, the crapheap that is the CQC, the increase in hate crime against disabled people, and so on, is hugely concerning. LB, like many other dudes like him, is vulnerable. He doesn’t have a malicious bone in his body, is loyal, loving and great company. But he doesn’t have any resources to defend himself.

I don’t like this discourse of ‘care providers’ when profit is often be the motivating factor in their operation. What ‘care’ are they providing? Are they ‘caring’ or is it more about containment? I have no personal issue with the particular company that was involved in this holiday. I have a broader issue with the way in which LB has already taken his first step into adult (almost) services and already the foundation of lack of information, choice and control is laid.

Oh, and a ‘staff change’ during a five day holiday with a group of young people like LB, in my book, is a complete fucking no no.

The Sickie

“Mum? Mum is it school today Mum?”
“Yep.”
“What if I didn’t feel well Mum?”
“Don’t you feel well?”
“No Mum.”
“What’s wrong?”
“Dodgy stomach Mum.”
“Well you look fine to me.”
“I can’t go to school Mum. I don’t want to infect the other kids.”
“You’re going to school.”
“Mum! I’ve got a dodgy stomach Mum. And I feel sick. That’s what I feel like today.”
“School LB.”
“MUM. I’m knackered Mum. And I’m seventeen. I HATE school.”

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]

The adult social worker

“LB, your new social worker’s coming to visit me today. Then she’s coming to meet you at school.”
“She’s already been Mum.”
“Eh? Wha?”
“She’s already been Mum.”
“Oh. What did you talk about?”
“Being sociable Mum.”
“Oh. Ok. Can you remember her name?”
“Anita Mum.”
“Ah, that’s your current social worker. You are going to meet your adult social worker today.”
“Adult Mum?”
“Yes, the one who will be your social worker when you’re an adult.”
“She’s already been Mum.”
“No, that was Anita. You’ll meet the new one today.”
“I don’t want to meet the social worker Mum. I don’t even know her. She’s probably racist Mum. And… And.. she’s on placement Mum. She’s not coming to school.”
“Don’t be silly LB. You’ve got to meet her today. She’s your new social worker.”
“The law’s the law Mum. She’s not coming back to school.”

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.

Considerations:

  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.