Jobcentreplus (or what the fucketty-fuck?)

Well. Where to start with this baby? First, I am going to try not to swear (other than repeating any swears that happened during reported naturally occurring talk. Second, this story follows on from The Atos Questionnaire, so if you ain’t familiar with that sad and sorry tale, click here.

So LB is now in receipt of Employment and Support Allowance (despite a news blackout that he was actually entitled to it).

All good in the end then? Well maybe. If he actually received it.

Today I dredged deep (after a lovely, lovely day at an autism conference in London yesterday) and found the energy? resources? reserves? strength? I don’t know what I found really, just something (which is remarkable after about 14 years of consistently shite support/sevices) and called Jobcentreplus to ask why, after the initial back payment of three months, LB hadn’t received a bean.

“Hello,” said JCP blokey, “I need to speak to LB to go through some security questions first.”
“Mmm.. not being funny, but unless you want to ask some Darth Vader and the Death Star Canteen type security questions, you’re probably better off asking me.”
“I need to speak to LB. He is in receipt of the allowance.”
“He won’t be able to answer your questions. He has severe learning difficulties.”
“Ah.. Oh yes, I see now. I should have asked these questions in a different order, then I would have known. Then I could have avoided that embarrassing question.”
“Yeah.”
“So, let me try and work out what’s  happened here then. Oh yes, there is a stop on the account because the sick note provided is dated from 16 November to 16 February. You need to go to the GP and get a medical certificate to cover the period from 16 February.”
“Er, we originally provided an indefinite medical certificate in February and we were asked to get a second one covering November to February. We sent that ages ago.”

Let’s take a moment here to reflect on what I’ve just written.

  1. LB is given an indefinite sick note by the GP. What is an indefinite sick note?
  2. Despite having an ‘indefinite’ sick note, the GP had to produce a second sick note to cover the three months before the original sick note. Backdating an ‘indefinite’ sick note? What does that mean?
  3. [1] and [2] had to happen despite 14 plus years of medical, health and social care reports detailing in painfully minute detail, LB’s ‘deficits and shortcomings’ (in official eyes).
  4. Despite [1] and [2] (and even without [3]) we then get a 20 odd page Atos questionnaire to complete to provide evidence of the efficacy of the ‘indefinite’ sick note.

Well, the swear constraints can fuck right off. This system is beyond shite. And horrendous to experience.

So, back to JCP blokey.

“Oh, I see what’s happened. When they got the second medical certificate, they entered that, and overlooked the original certificate. That’s here but they’ve only entered the November to February dates. That’s why there’s a block on the account.”
“Oh.”
“Mmmm. I need to sort this out.”
“Bloody hell.”
“Well yes, I’d have probably said something similar myself in your shoes.”
“Bloody hell.”
“I’ll email them straightaway to sort this out. It will only take about 3 hours to change it. The account should then be unblocked.”
“When you say them, who do you mean?”
“Oh, the benefits people. That’s who has to sort this out. I’m just a contact person on the helpline.”
“Thank you. Goodbye.”

What else is there to say really?

“What’s the time?!!”

“LB!!”
“Yes Mum.”
“EEEELLLLBBBBEEEE!!”
“Yes Mum. Where are you Mum?”
“IN THE BATHROOM. WHAT’S THE TIME??!”
“Dunno Mum.”
“GO AND ASK RICH THE TIME WILL YOU?”
“Yes Mum.”
[…….]

 

Mar-vaaah

“Mar-vaaah!”

“Eh? Wha?”

“Mar-vaaah!”

“What are you saying LB? I don’t understand you.”

“Mar-vaaah! Do you like Irish lorries, Mar-vaaah?”

Meeting Danny in the supermarket

I bumped into Danny in the supermarket, this evening.

“SARASIOBHAN!!!! WHAT.ARE.YOU.DOING.IN.HERE???” he shouted loudly,  laughing, phone pressed against his ear.
“Hi Danny!! How you doing???”
“OOOOH!!! Joan is on the phone. She wants to speak to you.”
“Sarasiobhan! WHAT ARE YOU DOING??? What are you doing in DANNY’S FLAT?????”
“Hi Joan! No, I’m not in Danny’s flat. We’re in the supermarket…”
“WHAT???”
“WE’RE IN THE SUPERMARKET. I’M.NOT.IN.DANNY’S.FLAT,” I shouted.
“Ahhhhhh!!!!”

We laughed. Had a chat. Then Danny disappeared.

I’ve done a bit of research about going out in public places. Probably not surprising to you loyal blog followers, given LBs open engagement with all things ‘out of order’ in his book. In one interview early on, a mother of a young learning disabled boy told me she always shopped in Tesco’s with him early on Saturday mornings. I remember thinking to myself “Sensible woman..”

I asked her at the end of the interview to explain why she did the early morning gig. Without hesitation, she explained that her son liked to touch people and say “Hiya”. If the supermarket was busy, people never responded. If it was empty, there was more of a chance someone would say “Hiya” back.

It was a lesson to me in assumptions. One I still use in teaching.

She went on to say that she liked the way in which being out in places like the supermarket, or on the bus, with her son, had reduced her inhibitions.  She enjoyed his random behaviour and interactions with other people. It made everyday life more fun and lively. “Oh blimey,” I remember thinking, “You totally lost me there…”

It took a few years, but I’m with her on that now.

Public space can be a dull, colourless, overly ordered, space.

It was good to see you, Danny. And to talk to you on the phone, Joan!

Benefit cheaters

The whole business of who should inform people of the benefits, support and services they may be entitled to has been playing on my mind for the last few weeks. In some work I’m doing, involving interviews with people with long term conditions, there are consistent reports of people not knowing. Not knowing they were entitled to x, y or z.

Similarly, I was surprised to be told by mates that LB has been entitled to Employment and Support Allowance since he was 16. Eh? Wha? Are you sure?? How do you know? (Other parents told them). How could I not know?

I cast my mind back over all the meetings I’ve had with various profs over the past year or so:

  • There was that DWP woman who travelled 100 miles to see for herself whether LB could manage his own finances.
  • Two annual reviews with a Connexion worker and a social worker in attendance, as well as school staff.
  • At least three meetings with a transition social worker (to increase LB’s care package (from 4 hours a month, to 4 hours a week and discuss the future).
  • The Direct Payments police.
  • School nurse, paediatric neurologist, adult neurologist, GP, local authority funded care agency… and so on.

Now I ain’t suggesting it is the responsibility of any one of the above to inform us of benefits. I’m just surprised that given the huge layers of bureaucracy and meetings that having a child like LB involves, we could get to him being over 17 without a mention of ESA.

On Twitter yesterday, a couple of people said there are welfare rights experts based in CABs (currently under threat from government cuts). But it boils down to the old saying; you don’t know what you don’t know. I didn’t know I should contact the CAB at this point (or a year ago). And, given the amount of time I have spent in meetings like the ones listed above, I suppose I didn’t think I needed to.

For me, there is an opaqueness to the benefit system in this country. So much information seems to be passed on from parent to parent, disabled person to disabled person, support group to members, rather than through ‘official’ channels.  I’ve had a shufty at the government website providing information about ESA and other benefits. Reading the information, it wouldn’t have crossed my mind that LB is eligible. A quick look at the other benefits/allowances left me as much in the dark. It took seconds to be told about ESA, by mates, and to be emailed the number I then rang to organise it. Seconds.

Makes me wonder, really, who is doing the cheating?

The Atos questionnaire

Many of you will be, luckily, unaware of Atos, a French IT company. Googling Atos will produce mountains of complaints and criticisms about Atos Healthcare, a divison of Atos, that has been awarded the contract to assess scroungers’* ability to work on behalf of the Dept of Work and Pensions (DWP). To save you the task, here is a good overview of the Atos crapness. Well this company is raking in the casheroony in a big way. Bit like A4e (Action for Employment) and the infamous Emma Harrison, until recently, Cameron’s families *cough* *cough* *cough* tzar.

So, back to Atos. And LB. Well, as I’ve mentioned here before, I recently found out, through mates (rather than the enormous machinery of health, education and social care services) that LB has been entitled to Employment and Support Allowance since he turned 16 over a year ago. We can backdate claims by three months.

To start the claim, I did a phone interview with JobCentre Plus (JCP) which lasted about 40 minutes and included mind boggling questions like “Who is the head of your household?” The next step was to get a sick note (???) from the GP.  He sensibly gave LB an indefinite sick note. This was returned by JCP as it needed to be backdated by three months. Back to the GP for second sick note. Indefinitely sick since November 2011.

So a medical practitioner has authorised LB’s removal from job seeking indefinitely. But that’s no longer enough. There is a Limited capability to work questionnaire to fill in, so that experts (undefined) from Atos can judge whether or not LB has legitimate access to allowances in place of paid employment.

Well. Where to start? It’s 20 pages long, covering questions about medical condition, treatment/medication, physical and ‘mental, cognitive and intellectual functions’.

Questionnaires are always flawed but this one is legendary in its crapness. I feel strongly that if someone can’t fill in the questionnaire themselves, because they have severe learning disabilities, then it’s a done deal. Bin the questionnaire, it’s pretty obvious that this person is going to have a limited capability for work. I’m not suggesting at all that people with severe learning disabilities are not ever capable of paid employment, but that some limiting parameters are in place in terms of the engagement with the process. And if they can’t engage with the process, some other poor buggar (often parent) will have to instead to fill it in on their behalf.

Compounding this, the content of the questionnaire is baffling and ultimately meaningless. For example;

Can you learn how to do a simple task like setting an alarm clock or a more complicated task like using a washing machine?

How is setting an alarm clock a simple task? You’ve got to be able to tell the time for starters, before you even turn to the clock. Just a small consideration I suppose in the experts at Atos’ eyes.  Teaching LB the time has been an ongoing process for the last 2/3 years and no, the boy ain’t cracked it yet. Let’s park that (minor) detail for now. Do Atos mean a manual alarm clock, where you have to scooby round some second set of hands to the time you want the alarm to go off? Never an easy task. Or a digital alarm clock??? It is ill-thought out nonsense.

The next question is “Initiating actions” and asks; Can you manage to plan, start and finish daily tasks? Possible answers – never, sometimes or it varies. Again, gaping holes here. Do they mean unaided, or with prompts/support? Do they mean ‘sensible’ plans/tasks, like ‘today I’m going to buy some bread and milk’, or less ‘sensible’ plans, like ‘today I’m going to stay in bed and play with my willy all day’? Atos would possibly argue that the text box below each question enables the more nuanced details to be thrashed out, but how is that text going to be measured, counted or made sense of?

Well here is how; an outline of the way in which the questions are awarded points. So, for example, points for the simple task question;

Cannot learn or understand how to successfully complete a simple task, such as setting an alarm clock, at all. (15 points)

Needs to witness a demonstration, given more than once on the same occasion, of how to carry out a simple task before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a further demonstration of how to complete it. (15 points)

Needs to witness a demonstration of how to carry out a simple task, before the claimant is able to learn or understand how to complete the task successfully, but would be unable to successfully complete the task the following day without receiving a verbal prompt from another person. (9 points)

Points mean prizes. Luckily, the details of the point scoring are available on various sites/blogs if you have access to the internet. A lot of people don’t. One of the strong criticisms raised in recent debates around the ‘abuse’ of Disability Living Allowance was that people sought advice, or even paid people, to help them fill in the forms. What the government fail to see, or choose to ignore, is that these forms are so overly complicated, and with hidden agendas, that most people would not qualify for the allowance without the help of people who understand the system and process. Not because they are scamming the system.

By page 15, I gave up with the game.  I started to write ‘LB has severe learning disabilities’ in each box. I don’t know how many points that will produce, but I’m willing to take it up with Atos or JCP. It’s a nasty, underhand, thoughtless and ultimately meaningless process designed purely for economic reasons; to reduce costs. The human costs are racking up of course. But hey ho.

*In case you didn’t know, benefit claimants are all scroungers until proved otherwise.

Update: 20 July.

Got DWP letter today. LB’s met the eligibility criteria for Support Group. “Success”.

Pygmy goats and eerie owls

Trippet to a small breeds farm/owl sanctuary for half term. I took LB, Tom and his mate.

The highlight was going into an enclosure of pygmy goats for some serious goat mingling.  A small inner room, before the gate to the enclosure, had signs warning that these goats were particularly mischievous and very clever. No food was to be taken in – a shelf was provided in this small space for feed buckets to be left – and if a goat escaped from the enclosure, a sharp shove from behind should get it back in.

Well, it probably doesn’t need saying that once Tom and his mate had gone through the gate, four goats shot out before LB moved.  We were no match for a pygmy or ten. They jumped straight up to the food shelf, knocked the food buckets over and started munching.

LB and I stood there pretty uselessly, I have to say. Well LB was totally useless. I got the food buckets back and made a few half hearted efforts to push them towards the gate but they were all over the place. Some seriously lively goatlets.

“There’s a load more waiting by the gate on this side, Mum,” Tom warned, from the enclosure.

“Crap. What are we going to do?”, I wondered, wearing the farm cone of shame. My new bezzy goat mates, nudged our legs. Just waiting for us to be even more incompetent and set them completely free.

Eventually, the goats on the other side wandered off and I managed to push LB into the enclosure with two escapees, who had had enough of nearly freedom.  The other two sat it out for a bit. Studiously resisting any attempts to shove them from behind. Particularly this little black one who had taken a real shine to us. In the end though, the pair gave it up and went back in.

“Take that, you cheeky little pygmy goats,” I said. Swatting at their backsides on the way through the gate.

After that it was all about the owls really.  And that is more visual.

Eerie. And very still.

“Will I go blind Mum?”

“What happened to Stan’s eye Mum?”

“He got glaucoma and went blind.”

“Why didn’t the vet fix it Mum?”

“He tried but there was nothing he could do about it.”

“Will I go blind Mum?”

“No! of course you won’t! You won’t get glaucoma.”

“What have I got Mum?”

“You tell me. What have you got?”

“Trucks Mum.”

Bunking off (a first)

LB was off for a lot of last week with a nasty cold.  This week, he came down for breakfast on Tuesday complaining of a stomach ache.  I told him to eat his breakfast and see how he felt. “Got a bad stomach, Mum,” he groaned.  After a bit more questioning, he stuck to his story and though he ate his breakfast, he held his tummy throughout groaning realistically.

“Ok, back off to bed,” I said, “I’ll call the taxi and let ’em know.”

He disappeared, I called the taxi and went to make a cup of tea.

I turned round to find him sitting in front of the laptop.

“Whatthehellareyoudoing??????”

“I’m better now Mum.”

LB and the ‘c’ word

“Hey, LB. Tell Mum what you called me when I came in yesterday,” said Richy.
“The ‘c’ word Mum.”
“What?!!! What did you do that for???”
“Dunno Mum. It just came up and out of my mouth, Mum. I’m sorry Richy. I won’t say it again, I promise.”

Postscript: We ain’t made him stand in the corner. He’s peering at the bus depot through the park fence. Honestly.