Labour Now: No Logic, Nor Morality

Jamie Driscoll writes:

Peter had been an HGV driver for over 20 years. One day, Peter had a seizure. And – bang – just like that, Peter was medically unfit to drive a lorry. Imagine the shock.

Like most people, Peter had financial commitments. There was no work he could get that paid anything like the same wages. The fact he’d paid his tax and paid his National Insurance all that time counted for nothing. He was skint.

His debts built up. The stress of money worries, the health worries – he still really didn’t understand why he’d had a seizure – all overwhelmed him. Peter went into a desperate spiral of mental ill health. He started drinking heavily. His relationship broke up.

Peter was referred to a mentoring course I funded as North of Tyne Mayor. He got one-to-one support from a counsellor. The first think they did was listen to him. Not fill in forms. Not assess him for ‘work capability’. Not tell him to buck his ideas up. Just listened to him, not as another client to be benignly steered to some work course, but as Peter. His worries. His regrets. How he saw his future. It gave him the head space to get his life back under control. We were patient. There was no deadline.

‘Disabled’ is not a one-size-fits-all category

I met him a year later, and I’ve changed his name for this article. His confidence was rebuilt. He retrained in logistics. He’s got a new job and is back on his feet. He’s in a new relationship, and has a little baby. There was nothing about the person I sat and had a cup of coffee with that made me think he was different from anyone else. He was warm, thoughtful, and a good communicator. When life dealt him a blow, he stumbled. When he was offered a hand, he got back on his feet.

I wonder if I hadn’t funded that course, whether Peter would now be another increment on the suicide statistics.

We must see people as people. There’s nothing ideological about saying we should not leave people behind.

By investing in Peter, he’s healthier, happier, in work, and paying taxes. It’s common sense to say that treating people with dignity produces better outcomes.

We did it by listening to people. I’ve always believed that if you want good education policy, you should listen to teachers. If you want good health policy, listen to doctors. If you want to know how to speed up buses, listen to bus drivers.

I did the same thing with our equalities assemblies. My remit was economic – how to grow the economy. I wasn’t in charge of running any public services. Still, we convened people from disabled groups, and listened to their actual problems. The real barriers they faced day-to-day. We improved the understanding of me and my team, that “disabled” is not a one-size-fits-all category.

Labour now: no logic, nor morality

All the talk of “savings” and “iron clad fiscal rules” is not just cruel, it’s illiterate. Seeing people as nothing more than economic work units assaults our common humanity and blinds us to common sense.

The film I, Daniel Blake sums it up perfectly. A skilled worker, with much to contribute, is crunched by the system and driven to an early grave. It’s set in Newcastle, and Dave Johns who played Daniel Blake was kind enough to do a fundraising gig for my election campaign.

When that film came out, Labour MPs queued up to be seen with Ken Loach. When the Labour Party expelled him, they ran for cover.

These people are now preparing to decimate the little remaining support that chronically ill and disabled people have. I was famously blocked from re-standing for Labour after talking to Ken Loach about his films at a cultural event about films. Neither logic nor morality seems to influence Labour policy any more.

Treat people with dignity

Hannah is a young woman I met. We worked directly with the charities and campaigning groups to co-design the courses I funded.

The first thing Hannah told me was that she’s an autistic person. She did have a job, some years ago, but her line manager changed. Her new manager wasn’t sympathetic. In fact, she’d snapped at Hannah:

Why can’t you be more like everybody else?

Hannah lost her job there, and felt she would never be employed by anyone. Her confidence was rock bottom.

Most work courses tell people how to put together a CV, and then make people apply for jobs for 35 hours a week. As someone who has employed a lot of people, I can tell you it just wastes everyone’s time.

Employers don’t want to have to sift through applications where people are clearly not qualified. People looking for work can do without the constant rejection. Why make people jump through hoops just so angry people with no understanding of the subject can feel good that “lazy” people are getting punished. It’s straight out of a Dickens novel.

Instead, Hannah got one-to-one support. Her coach found out what she liked and what she was good at. He got to see Hannah as a person. They worked together, and thought about what would be Hannah’s ideal job. It turned out that Hannah has an aptitude for images. So they actively approached companies that manage automatic number plate recognition systems, and got Hannah a job. When the computer can’t recognise the image, she corrects it.

But it doesn’t end there. Her mentor still checks in on her. He got her employer to adjust the way they decide employee of the month so her work could be included. Hannah now has a permanent job, she’s earning decent money, paying tax, and feeling good about herself. I saw her again a few months later, and she’d won employee of the month.

Treating people with dignity is economic common sense.

Rachel Curtis writes:

At the end of a week that saw our Labour Party government announce plans to strip some disabled people of Personal Independence Payment and entitlements under Universal Credit, we have World Down’s Syndrome Day on Friday 21 March. A day dedicated to celebrating the lives of people living with Down’s Syndrome; people like my daughter Betsy.

As a disabled person myself I am scared about how I’m going to survive after the DWP reforms.

But as the mother of a disabled child I am terrified. For her.

What kind of world are disabled children growing up in? This is the world she is growing up into. In a country that punishes people for being disabled, forcing us into poverty. Any parent of a disabled child will tell you that their greatest fear is dying and leaving their vulnerable child without care and advocacy. That fear has never been so extreme as it is right now, because nobody else is going to advocate for her; write the letters; attend the meetings, and lodge the tribunals – alongside providing 24/7 care for her.

Down’s Syndrome is a genetic condition caused by the body having an extra copy of chromosome 21. It expresses differently in every person, causing a wide range of health conditions and always comes with learning disability.

My daughter is medically complex, with multiple serious health conditions that means she needs 1:1 care at all times. She frequently needs hospital treatment. Learning disability can be caused by many different factors, but in my daughter’s case, it is because she has Down’s Syndrome.

She cannot advocate for herself. I am her voice.

The UK is a country that does not have the infrastructure and funding in place to ensure that children with learning disabilities have access to the same rights as typical children. For my daughter’s entire life I have had to fight to get her the support she needs, in every arena. Education. Healthcare. Enrichment.

Yet sometimes there is literally nothing in place to fight for, such is the black hole of support provided by our government.

So to hear that, despite having education, health care, and social care systems that fail disabled children, they are expected to magically grow up to be able to work and support themselves is absurd. The government aren’t even giving children with SEND a fighting chance.

The state is failing us at every turn

To start at the beginning. Early intervention in nursery education for children with SEND is virtually non existent. Even for my daughter, who was born with a physically-evident disability, was denied extra help by our local government. So I fought. Wrote the complaint. Submitted an appeal.

Then we reach school age. Hundreds of thousands of children with SEND cannot access mainstream education. It’s just not designed to meet the sensory and physical needs of many children. That would require huge investment from our government, which is clearly not forthcoming. To have the right to attend a specialist provision children need a Education Health and Care Plan. A legal document that gives a child the right to the support they need. Whether that be a member of staff with them at all times, Speech and Language Therapy, or anything else they need. Even getting an assessment for a child to have an EHCP is gold dust. Betsy was denied an assessment for her EHCP that she needed to access education. So I fought. Wrote the complaint. Submitted the appeal. Lodged the tribunal.

Then, I think we all know how well the NHS is functioning right now.

The NHS and social care

For disabled children not having access to the healthcare they have a right to is another arena in which they are being failed. Children are stuck on two-year waiting lists for an assessment for Autism. My own daughter required urgent surgery, due to a breathing problem while she was sleeping. The waiting list was over six months. When I say ‘urgent’, I mean life-threatening. My daughter was denied referrals for Orthotics support with the excuse that it’s normal for children with Down’s Syndrome to have hypermobile ankles. Yes, so treat it with the correct insoles and support. I wrote the complaint. Made the phone calls. Got the appointment.

If anyone has had to call 999 and have a trip to A&E you will know the trauma of that scenario under the current circumstances in the NHS. Which brings me on to social care.

Families who have a disabled child face higher levels of poverty than those with typical children. More often than not, one parent has had to give up work to care for their child. Why? Because there is no social care service. Social care is broken. Even for the few children who qualify for a few hours, it’s virtually impossible to find a support worker. Another gift from Brexit. Carer’s Allowance for parents who have had to give up work, stands at £81.90 per week. Often for providing 24/7 care. That drop in income from parental loss of a salary affects disabled children drastically. There are no letters to write or complaints to lodge about this. This is the accepted normality for families like mine, from our government.

Locked out even further by the Labour government

So we have disabled children locked out of healthcare, education, and even opportunities to enrich their lives.

I can count on one hand the amount of wheelchair swings there are in Northumberland. Changing Places facilities are few. Activities are often not inclusive. Community groups run by parent carers who volunteer their time, and what little energy we have, seek to create opportunities for children with SEND to experience childhood activities in an accessible format. The group I run is massively oversubscribed. Places on enrichment activities are in such demand. Children miss out on enrichment experiences due to their disability.

Implementing the social model of disability is vital for children too.

So yes, I am celebrating Betsy today on World Down’s Syndrome Day. I am celebrating her life, the amazing person she is: her resilience, her kindness, her creativity, and her very being. 

At the same time though, I am beyond angry at how this government have created a destructive narrative around her. That she won’t have worth if she can’t work. This, combined with the complete failure to have a working social model of disability support in place for children in the UK, paints a dark picture for her future.

World Down’s Syndrome Day: give disabled children a chance

On World Down’s Syndrome Day I call on our government to take a close look at the stark reality of life for disabled children in the UK and ask themselves, is this what you want to be your legacy? Exclusion. Sickness. Poverty.

Give disabled children in the UK a fighting chance. After all, they have human rights. Don’t they?

And poor old Polly Toynbee, of whose life this is probably the last Labour Government, writes:

Wrong, badly wrong, and it won’t easily, if ever, be forgotten or forgiven. To take £5bn from those with the least, disability claimants already well below the median income who are clustered in the poorest towns, will leave a lasting scar on Labour’s reputation.

Sending Labour ministers out on the airwaves to defend the indefensible has been like sending lambs to the slaughter. The welfare secretary, Liz Kendall, and the employment minister, Alison McGovern, used to speak with passion about their optimistic plans for the future of work – but they never meant £5bn cuts. Torsten Bell, the treasury minister, is fresh from heading the Resolution Foundation with its myriad reports on reducing poverty and inequality, but he had to back £5bn cuts on Newsnight. Stephen Timms, social security and disability minister at the Department for Work and Pensions (DWP), is one of the most thoughtful and knowledgeable ministers about social security. He surely never intended this, yet he too was sent out on BBC Radio 4’s Today programme.

Rachel Reeves was a Keynesian, not originally a cutter, but the Treasury is good at frightening the life out of chancellors, and was likely induced to stick to her iron fiscal laws with threats of a Truss crash. With deeper cuts expected, and some departments losing up to 7% of their budget, you can expect no spring in the step of Labour ministers after next week’s spring statement.

A woman called Emma recently contacted me. Do I remember her? How could I forget, although it’s 13 years since I visited her in Horsham, West Sussex, back when the then Tory work and pensions secretary, Iain Duncan Smith, was inflicting savage disability cuts. Hers is one of those stories of misfortune and fortitude that stays in your memory with “there but for the grace of God” admiration. 

Here’s what I wrote then about her life with three hyperactive disabled children living in a two-bedroom home: “Rhys, six, is in special school, a child with no sense of danger, on impulse throwing himself down stairs, pulling furniture down on top of himself or hurtling into the road regardless of traffic. Outside he needs a wheelchair. Barely speaking, he eats with his hands, smearing food everywhere and he needs Ritalin to manage at school. He wakes at 4am every morning and has to be watched every waking minute from then on … Martyn, seven, manages in mainstream school with a teaching assistant to help: he bounces about the sitting room with the youngest, Caitlin. She has just had a heart operation, wears a hearing aid and, aged three, hardly talks, so she starts in special school soon.”

Emma told me then that if she had understood what the autism diagnosis meant for her first two, she never would have risked having a third. As often in families under stress of disabilities, her marriage has broken up since we met.

Now Emma herself uses a wheelchair, as she has severe rheumatoid arthritis, so she relies on her personal independent payment (Pip). Without it to pay for her car and her wheelchair she couldn’t have travelled to her beloved but low-paid job as an NHS administrator for the past four years. All three of her children are now on Pip: Martyn, 21, is holding down a job in WH Smith but needs support; Caitlin uses a wheelchair, and is still at school. Rhys needs the most help – after leaving his special school at 19, he’s now at college on an independent life skills course. “He has just learned to cross the road safely. The jobcentre took one look at him and said he couldn’t be there unaccompanied, so I don’t think an employer would look at him. I hope one day he might volunteer somewhere,” Emma said. The prospect of what will happen if her family lose their benefits has given her panic attacks. Rhys gets £800 a month: “He really needs that to get him to college, for his lunches, his phone, his basic needs. But he’s not 22 so he’ll lose that. He’ll be on about £300 a month universal credit, and we won’t manage.” Together, the family stands to lose thousands.

Although Emma is assessed with “ongoing” needs, she fears she faces another test. To keep her Pip, she needs to score four points for any one incapacity. “I have 13 points, but only twos or threes for any one activity,” she told me. Here’s how it works: anyone needing help to dress or wash their lower body (two points), help to manage incontinence (two points), help to bath or shower (three points), help to cut up their food (two points). Emma doesn’t have four points for any single one of her needs. And some imagine that the benefits system is too lax.

“Keir Starmer came to our hospital once and said hello when I was at work. He seemed a nice bloke,” she said. “I wouldn’t expect him to do something like this.” Yet here we are, back in Duncan Smith territory. When Labour said “no return to austerity”, it only meant no return to austerity as severe as the George Osborne era at its worst.

The original plans Kendall and McGovern used to talk about were all to do with support, encouragement and training for good jobs with good prospects – not any old job – with highly skilled work coaches offering face-to-face personal help. Kendall will still have £1bn to do some of that New Deal programme that worked for the last Labour government. The focus will be on those almost 1 million Neets, the young not in jobs or education, need a big support programme. But there’s an irony in that £5bn cut: that number is almost exactly the sum in 1997 that Gordon Brown seized in a windfall on privatised utilities to spend on Labour’s new deals for young people, disabled people, lone parents and the over-50s: it was spent with singular success in getting people into jobs. This time, analysts say that £5bn cut will get relatively few off benefits while mostly inflicting a brutal hit on families such as Emma’s. And no, benefits tests have not got easier: the Joseph Rowntree Foundation points to a higher rate of refusals over the past five years.

Why do this? Spending on working-age adult benefits, at about 5% of GDP, has changed little in two decades. A third of the growth over the past five years is due to the rise in pension age, with disabled older people claiming while they wait. The government could instead redistribute triple-locked pensions – one of the most generous welfare benefits, but the winter fuel payment row doubt deters them.

Though they’re yet to see the final details of Reeves’s plan, children’s charities estimate about 100,000 more children will fall into poverty because of disability cuts in their family. Labour, so scrupulous about sticking to its fiscal responsibility straitjacket, seems less concerned about its manifesto pledge to “develop an ambitious strategy to reduce child poverty” which “not only harms children’s lives now, it damages their future prospects, and holds back our economic potential as a country.”

Maybe Labour’s child poverty review, due out in the summer, will reverse this backwards direction of travel. But if so, that’s no help to the million, like Emma, about to be knocked down by these cuts. Just in from work, Emma said to me: “Today I have been shaking. I have palpitations. I am tearful. I don’t know what I am going to do. I won’t be able to afford to work – we could lose everything.”