What happens to my adult child who has learning difficulties when I’m not around to advocate?

What will happen to my disabled child in austerity after I die? What happens to my adult child who has learning difficulties when I’m not around to advocate?

In my interviews with parents of people with learning difficulties in the past ten years, there was a question which weighed on parents’ minds:

“What will happen to my child when I’m not around to insist that they have housing, income and care?”

This question wasn’t exclusive to austerity, but it took on a new intensity as Cameron-Osborne plans to eradicate public services became obvious.

Parents knew that housing, benefits and care services were being devastated by council funding cuts and welfare reform.

They knew that negotiating austerity’s brutal and labyrinthine public sector bureaucracies for housing, income and care could be devastatingly hard.

“What will happen when my child is an adult alone in austerity?”

That question didn’t really bear thinking about.

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Except that people did think about that question.

I thought about it myself.

I thought about it a lot from about 2014 to 2017, when I came to know Eddie*, a Kilburn man with learning difficulties.

In many ways, Eddie’s life over that time was an answer to that question.

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Eddie’s story (Eddie’s name has been changed)

Eddie was 51 when we met in 2014.

Eddie had learning and literacy difficulties. He’d received special needs education as a child. Eddie identified as Black British. I knew this, because we filled in a lot of job applications for Eddie together over the years and he always took care with the monitoring parts of the forms.

“I’m British born and bred,” Eddie often said proudly. He said that his parents had come to the UK from Jamaica – part of the Windrush generation.

Eddie had type one diabetes. He injected insulin several times a day. He had trouble managing his diabetes as he aged. He often caught colds and flu. He sometimes struggled to walk, because he had pain in his legs and feet.

Eddie had worked as a kitchen assistant for much of his adult life. He’d been made redundant about six years previously and had not found work again. Eddie signed on for JSA at Kilburn jobcentre. (I met Eddie at the jobcentre during a Kilburn Unemployed Workers’ Group leafleting session there. KUWG volunteers knew Eddie and gave him a great deal of support over the years. They pushed councils and the DWP to keep Eddie on the radar).

Eddie’s mother had died about a decade earlier: around 2004. Eddie had lived with his mother.

Things began to implode for Eddie several years after his mother’s death. He had to negotiate cash-strapped and dysfunctional public sector bureaucracies on his own. Post 2010, as austerity began to bite, the facts of that began to show.

An austerity state could never replace Eddie’s mother.

There was no question about it. I understood from conversations with Eddie that his mother had been the driving force in his life. She’d made sure that Eddie found work and stayed in work. She’d filled in forms and talked with employers about Eddie’s learning and literacy difficulties. At home, Eddie’s mother had kept their flat organised and clean.

Eddie’s mother was one of the few people who Eddie spoke about with affection.

He often said that he missed his mother.

I began to understand what that meant when I saw how Eddie lived.

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How people with learning difficulties are expected to live

I took these photos inside Eddie’s Kilburn flat in 2014.

This was how relying on the state in austerity looked for people in Eddie’s situation:

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The flat was disgusting – full of mould, dirt and vermin. It was all Eddie could afford.

Eddie relied on housing benefit to pay his entire rent. By this time, housing benefit only covered full private sector rents on London’s shabbiest flats.

Eddie’s private-sector landlord charged Brent council £1000 a month in housing benefit for the Kilburn flat in these pictures.

That was a benefits abuse in itself. Eddie’s landlord was paying a Zone 2 London mortgage with the housing benefit he collected by letting such places to councils.

The Kilburn flat had only one room. Eddie’s bed, kitchen, small fridge, washing machine, clothes and belongings were all crammed into that single tiny space. Wet clothes and towels hung from rails and chairs. The floors and benchtops were littered with rubbish, unwashed dishes and rotting food. Mice scuttled under the oven and bed.

Eddie never cleaned the bathroom – ever. There was no window in the bathroom. The whole flat stank of sewerage.

There was one ground-floor door in the flat which lead to a small and filthy backyard. I saw rubbish, used sanitary towels and dead rodents in that backyard. Eddie always kept the door to the yard closed for security. There was a tiny window above the door pane which he never opened. Condensation ran down the inside of the door in rivulets. Thick black mould blossomed inside the flat. It blanketed the walls and the ceiling in the wet air.

“It’s disgusting,” Eddie would say furiously of his accommodation. “I should be in a council flat with a separate kitchen, a separate bedroom. I’m getting sick. Look at this mould on my clothes.”

The noise from neighbouring flats in the house worried Eddie a great deal, too.

Eddie complained that he could hear his neighbours fighting. He called the police several times, because he said that his neighbours had threatened him.

His neighbours, meanwhile, complained that they could hear Eddie and his partner Linda having sex.

The problem was that low-rent flats such as Eddie’s were set in houses of multiple occupation – single houses which owners broke up into tiny rooms to rent out as flats to councils.

These landlords always planned to sell the buildings when the mortgages were finally paid.

Such landlords invested as little in the flats as possible. There was no soundproofing between the rooms. TVs and stereos screamed from each flat. People came and went all day – talking, shouting and slamming doors. The noise went on and on.

Eddie said that noise in the house was made entirely by his neighbours:

“They’re drug dealers. Shouting and yelling. Throwing furniture down the stairs last night. They never go to work. It’s disgusting. I shouldn’t be here.”

Eddie was furious about that.

Eddie was furious about everything.

Eddie’s anger worsened over the years as his living conditions, health and employment prospects deteriorated. He railed and ranted. He was hard to take a lot of the time.

He loathed council housing staff:

“They don’t do anything. They never help,”

He hated the jobcentre staff who he had to report to:

“They’re useless. They should all be sacked.”

He disliked his neighbours:

“They’re drug dealers. Shouting and yelling…they never go to work.”

and he hated immigrants:

“They should be put back where they came from…the problem is like a stray cat. Pick it off the street and then suddenly, you’re a soft touch…British and English people can’t get jobs, or flats, which they should have had, long time…When we had that other bitch in – she was so hard, she wouldn’t allow it. Margaret Thatcher. She was hard, that one. This one [David Cameron] has got no backbone.”

Eddie talked in a monologue which never changed, or ended.

His topics were always the same: he should have a job and a decent home, immigrants should be sent back where they came from, jobcentre and council staff were useless and everyone should be sacked.

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In 2015, Eddie was evicted from his Kilburn flat.

Kilburn Unemployed Workers’ Group activists helped Eddie find a similar-sized place – this time in Haringey. One KUWG activist in particular put a great deal of time into trying to solve Eddie’s housing and jobcentre problems. She set up meetings with council officers and pushed councils to provide Eddie with housing and support. She even went as far as to pay the deposit on the Haringey flat out of her own money.

Eddie was evicted from the Haringey flat in 2016.

The Haringey flat – like the Kilburn one – was in ruins at the end of Eddie’s tenancy.

That was because Eddie had exactly the same problems in Haringey as he’d had in Kilburn.

The Haringey flat was tiny – again, it was all that Eddie could afford in London as a housing benefit recipient.

There was only one room in the Haringey flat. The bed, kitchen, living space and all of Eddie’s belongings were crammed into that small, stifling space – a space that he could not air properly, or keep clean:

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Unemployment and learning difficulties in austerity – Kilburn and Wood Green jobcentres, 2014 to 2016.

What will happen to my child when I die?

Eddie was out of work. He was furious about it.

Eddie set great store by paid employment and self-sufficiency. He said volunteering was for ex-cons and people who couldn’t get proper work.

Eddie hated signing on for jobseekers’ allowance. I attended Eddie’s jobcentre meetings with him regularly for about three years. He signed on at Kilburn when we met. When he moved to Haringey, he signed on at Wood Green.

He said the same thing each time we attended these meetings:

“I shouldn’t be here. It’s degrading. It’s ten o’clock. Look at that. I should be at work. I should have been at work for two hours by now.”

For much of his adult life, Eddie had worked as a kitchen and general assistant in pubs and hotels: lifting, carrying, packing and cleaning.

Eddie had been made redundant from his last job as a general assistant some years before we met. He’d never found work again.

There were too many difficulties.

The first problem was that Eddie couldn’t compete for manual jobs as he aged and as his health deteriorated. He often looked ill and unkempt: sweaty, sometimes marked with sores, sometimes dressed in dirty clothes.

Eddie once showed me a photo that was taken at a job in his working days. He looked a completely different person: bright-eyed, smiling, clean and closely shaved.

The second problem was that Eddie’s learning and literacy difficulties excluded him from work.

With his mother gone, there was no-one to liaise with employers to manage questions and concerns about Eddie’s learning and literacy difficulties.

Jobcentres should have stepped in, but didn’t. Staff simply didn’t have the time, resource, or skills.

Few people we met at councils and jobcentres seemed to have any idea how learning difficulties might manifest.

Time and expertise was needed to explain Eddie’s belligerence and terror of the unfamiliar in particular to employers. Nobody had the time and few officers had the expertise.

The DWP cut specialist Disability Employment Advisers from jobcentres as an austerity measure. By the beginning of 2016, about 60% of DEAs had gone.

That left people in Eddie’s situation nowhere. Jobcentre adviser after adviser told Eddie and I that nobody at the jobcentre had the time to ring employers on his behalf, or or to liaise with employers about his learning and literacy difficulties, or even to photocopy his CV.

Eddie had to fill in job applications himself. His literacy difficulties made this very challenging.

Here’s an example – a Morrison’s job application that Eddie and I worked on together.

The extent of his literacy difficulties is clear.📷

Eddie struggled to write his thoughts directly onto the form in the first instance.

So, to fill in the form, he would tell me what he wanted to say. I would write his sentences in my notebook.

Then, Eddie would copy the sentences from the notebook onto the application form.

We did this again and again over the years.

Needless to say, Eddie never made a successful job application.

Time and time again, he’d report that his literacy difficulties eliminated him from contention:

“I went to a nursing home in Enfield [for a job]… I really should have got in there, because it was just a simple kitchen assistant job. No – the reason they give me [for not offering Eddie the job] was “Oh, there were some mistakes in the application form and the spelling,”

and:

“I went to B&Q [for a job as a warehouse packer]…they wanted you to do a massive English test for five hours, just for packing plants in Cricklewood.

“I should have got the job, just packing the plants, but they were making life so difficult for simple things. I had to do an English and maths test – and nah, it’s not worth it…

“They want you to use the till… it was too hard… If it had been just doing the warehouse like packing, then that would have been fine.”

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The hopeless private companies which were meant to provide so-called “back to work support” for people with learning difficulties

The DWP’s only answer to any of this was to send Eddie on Work Choice programmes – schemes run by private companies which were supposed to offer skilled staff to help disabled people with jobs, CVs and job-finding.

That was the theory.

The reality was that this “service” was awful. Staff were amateur in the extreme.

The staff we met with seemed to have no understanding whatsoever of learning or literacy difficulties, complex needs, or challenging behaviour. This was incredible. The whole purpose of these programmes was to give back-to-work support to people with such support requirements.

When we met, Eddie had been on four Work Choice placements, to no avail. Staff simply wrote Eddie off as recalcitrant and rude.

No matter that their behaviour towards Eddie could be extremely unprofessional.

I once sat in Wood Green jobcentre in 2016 when a Reed Work Choice adviser tried to push Eddie onto another of these so-called “employability” courses.

This Reed adviser obviously had no familiarity with learning and literacy difficulties at all. He certainly had no notion that people with learning difficulties might sometimes struggle with change. He couldn’t understand why Eddie might balk at the idea of travelling to an employability course in a part of London that he didn’t know.

Certainly, the Reed adviser showed no flexibility. He was very reluctant to let Eddie bring a supporter to one of the training courses that he kept trying to push Eddie onto.

I had to grovel to get the Reed adviser to agree to let me accompany Eddie to the course that the adviser was proposing:

I asked the Reed adviser:

“Would it be okay [for me] to come along and support [Eddie] for a bit? Usually, the jobcentre has been good at allowing us to come to Seetec or Reed… change [for Eddie] is a bit difficult.”

The adviser was confused by the request. He made me repeat it. He did not understand what I was asking, or why.

The rest of the interview was equally odd and offputting. The Reed adviser spent most of the interview talking about himself. He spoke rapidly and he jumped from topic to topic. He was hard to follow a lot of the time.

The Reed adviser said:

“What we do then is this…see, what you are able to do, CV, whether you can amend your CV. if there are big gaps, beautiful CV, but people can get stuck… first, you want to make sure that your profile… go on our training first… so we have training… check your CV, proper job search and to see if there’s anything… mock interviews… that is almost one week long… 30 hours at the end of the week. Week one with me and the managers on side and then we start matching your skills with the personnel, and that is really what happens. Does that sound interesting to you?”

Eddie was clearly confused by this. So was I. Eddie wanted straight answers. He wanted to know if this man could place him a general assistant’s job in a hospital or school kitchen with minimum fuss. Eddie wanted a public sector job, because he felt that the public sector was secure and had good pension schemes.

Eddie said:

“But would it be like hospital…schools… the sort of work that I am looking for? More secure than pubs and restaurants, and that sort of work…”

The Reed adviser said:

“That is the second stage… but before we get there, we always want to start by getting up skills. I understand… no ideas, to be honest, no ideas…[about what work would be available] not a big problem… [you should not say] “I only want that kind of job”… sometimes, if you’re more… want experience… how long have you been out of work?”

Eddie said:

“Quite a while, actually, but I’ve got experience.”

The Reed adviser said:

“Did you sit down and figure out why it had taken that long?”

Eddie said:

“Half the time, it’s people making different excuses [for not employing me]. [They’ll say] “Oh, it’s too many people applying for one job.” It’s just outrageous.”

The Reed adviser said:

“It is true, but that’s not an excuse. It’s just a fact. That is where you need to be pragmatic in the sense that…I will give you an example. I’ve been in admin work for half my life and there was almost five years where I didn’t do my admin, but I know my admin. I also know that I only want admin… and it must be in Wood Green, because I live in Wood Green, and I will get that job… but in five years… could be obsolete, so these are the things that I have to check on myself. I tell myself – I speak good English. I can [move around for work] you know and that’s how I attacked it myself… I [decided that I don’t have to get a job in Wood Green. I can get a job in Tottenham. That’s not far from Wood Green, so [I can] move myself. When I get a job – while I’m working, [I] look for the sort of thing [I want]… but in any fact…if I had not looked in Tottenham, it would have taken me another 5 years [to find work]… [laughs].”

This went on and on and on.

Nothing ever changed. Nothing could change. It was obvious that advisers had decided that Eddie was unemployable. They tried to push him onto courses from time to time, because they had to show that they weren’t letting Eddie collect his dole for months on end without pushing him to upskill and find work – but that was it.

Eddie, meanwhile, talked in a monologue about the jobs he planned to apply for. This went on for weeks and months and years as well.

“I’ve got an application for a betting shop [job]…The Citizens Advice Bureau – they would probably say they are not going to do that [help Eddie fill in the application form]. No way. You’re wasting your time.

“I done one… it’s rubbish. Done quickly. Waste of time…these jobs I went for here… it’s a sales assistant job… I’ve got a cold. Throat’s dry.

“This cafe, they have got a temporary job for Christmas, but it could be permanent in the New Year. They call you back in two weeks time. They’re French. This one here is a comedy club. I took my CV in.

“This one is kitchen assistant. They said they wanted a housekeeper. They said they wanted a woman, which would be sexist in this day and age. They said they’re not supposed to say that you’re the wrong sex. Not supposed to say that… They call you if they want you.

“This posh menswear shop where the city men dress up… I did a CV here as well – assistant.

“This one is a pet shop. Fill in an application form… and a sweet shop. Fill in the application for a sweet shop assistant. This is a bike shop. It is in Camden town. That one application form, I find it in Metro housekeeping. That’s it. That’s 14 jobs.

“I can’t be doing this. I [want to] get a job and get out [of the jobcentre]. It’s unfortunate that I ended up ill. I can’t help that I’m tired – tired and drained. Just want to get this and get out. Get a job. I can relax and get out of that shithole [the jobcentre].”

Indeed.

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Housing and income: How did things get to this stage for Eddie?

I think that Eddie’s problem was that on the face of things, he coped.

That’s a problem when public services are scarce.

People who are thought to be coping simply fall off the radar. They’re just not considered priorities by an overstretched and under-resourced public sector.

Eddie could dress himself, shop and make a meal. He could walk or get the bus to the jobcentre on the days that he had to attend.

As far as councils and the DWP were concerned, Eddie managed on a day-to-day basis.

The bar for this “managing” was set ridiculously low. I once stood in Eddie’s Kilburn flat with a Brent council officer who stated that the thick mould which coated the walls wasn’t a big problem and was easily fixed. None of these easy fixes were offered – then, or later. The officer left Eddie’s flat and wasn’t heard from for months.

Compared with others, Eddie coped.

The truth was, though, that Eddie was floundering. The state of his accommodation proved that. The problem was that after Eddie’s mother died, there was nobody in the public system to push Eddie’s case – to insist that Eddie was a priority. If it hadn’t been for KUWG volunteers staying in touch with Eddie and pushing councils and the DWP for services, Eddie would have dropped out of sight.

God knows how many Eddies have actually dropped out of sight in austerity.

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Using challenging behaviour as an excuse to sideline people with learning difficulties

There was something else.

Eddie had learning difficulties. His situation was complex. His behaviour could sometimes be challenging. He could be rude and unreliable. Often, he was belligerent. He struggled to fill in forms and to attend meetings. He ran out of credit and battery on his phone, and didn’t answer his phone for weeks.

Eddie reacted aggressively to complex instructions and new situations. He would stamp into councils or jobcentres, or local MPs’ surgeries and law centres, and demand rescue – and then dissolve in fury and frustration when instructed to provide paperwork and photographic evidence of his housing.

Some staff understood that Eddie’s situation was complicated and that he wanted immediate answers to his problems. They knew that he could not navigate austerity’s labyrinthine public sector bureaucracies alone to find solutions.

Other staff used Eddie’s behaviour as an excuse not to engage with him.

This is important.

Some staff would insist that Eddie had the right to turn down support if he didn’t want to engage. They were correct, of course. People in Eddie’s situation had every right to decide who they wanted to interact with. Autonomy is an absolute entitlement.

The problem was that staff didn’t take that line because it was correct.

They took that line because it was convenient.

It was clear that some staff embraced Eddie’s anger and reluctance to engage with them – because that meant they didn’t have to engage with him. They didn’t have to find the time, energy, or resources to fix Eddie’s problems. They could say that they’d tried and leave it there.

Eddie’s fury and refusal to participate – even if that refusal was often borne of fear, anger and a struggle to grasp impossibly convoluted public sector bureaucracies – was a get-out card for service providers in austerity.

They co-opted the notion of autonomy for disabled people – not because that notion was right, but because that notion was expedient.

The upshot of this mess was Eddie’s disgusting accommodation and fast-deteriorating health.

Eddie told me that he’d had a social worker in the past, but that person had stopped visiting when the service was cut. No replacement had been made at the time when I met Eddie.

After a great deal of pushing from KUWG volunteers, Eddie was awarded a degree of low-level council care support – but nobody at Brent council made sure that Eddie got that care, or was even able to get to it.

A council referral to a third-party support organisation for assessment and support went badly for a long time, because Eddie struggled to understand why he had to use a service that did not seem to be connected to the council, or why an assessment and advocacy from that service might improve his chances of council accommodation.

He would angrily insist that the staff he was meant to meet with were stupid:

“They’re useless. They should all be sacked.”

What will happen to my disabled child after I die?

That.

PART ONE ENDS