Work And Pensions Committee To Question ATOS, Maximus And Capita On ‘Gruelling’ Medical Assessments

DECEMBER 4, 2017

by same difference

A press release:

This week on Wednesday 6 December at 0930 the Committee will question DWP contractors Atos, Capita and Maximus, who carry out the medical assessments for disability benefits PIP and ESA, putting the disturbing evidence it has heard so far to them. The Committee is also publishing the contractors’ written evidence ahead of their oral testimony.

The unprecedented public response to the Committee’s inquiry has included thousands of individual accounts of medical assessments that range from frustrating to gruelling, and oral testimony from claimants and advocacy groups in the first evidence session strongly reinforced that picture.  Many claimants of ESA and PIP in particular challenge the DWP benefit decision based on these medical assessments, first through “Mandatory Reconsideration”, and then a final appeal stage at a tribunal. However, in May of this year an FOI request revealed that DWP sets a target for 80% of Mandatory Reconsiderations to uphold the original decision. The Committee today publishes a letter to DWP asking how such a target is compatible with a fair and impartial reconsideration process. High proportions of DWP decisions for both benefits are overturned at the tribunal appeal stage, sometimes with a radically different award being decided.

The Committee previously published evidence from the Public and Commercial Services Union, representing the DWP staff who use the medical assessments to make benefits decisions. In that evidence PCS says “our members report that there are regular examples where

the level of expertise of the person carrying out the assessment does not appear to match the requirements of the health condition being assessed…” and that “we do not believe that there is any real quality control. Previous contracts have only been terminated when failings reached extreme levels.”

DWP has today released statistics on the proportion of medical assessments that are deemed “unacceptable” when they are sent to the Department by contractors Atos (IAS on the chart below) and Capita. The charts appear to show remarkably high, if slowly improving, levels of unacceptable reports, in Capita’s case at least with extraordinary fluctuations. Key points:

–          Neither contractor has, at any point in the PIP contract, met the performance target of 3% of reports deemed “unacceptable”.

–          Capita’s own auditing found that at points in the contract almost 60% of its reports were “unacceptable”.

“If you don’t pay your rent, we’re going to look at every penny you spend and see whether you’re intentionally homeless…” How contempt for homeless people really plays

Posted on November 30, 2017 courtesy of Francis Ryan

This is the third article in a series with a housing officer who talks about the realities of providing housing services at councils in austerity across London and Greater London councils.* There’s a transcript from the interview at the end of this post.

In this article, the officer talks about two issues that should enrage everyone:

1) the grossly unfair intentional homelessness decisions that some councils make

2) the contempt for benefit claimants and homeless people that drives some intentional homelessness decisions and some frontline officers generally. I and others have certainly seen that in the past few years.

The officer in this article says that some housing officers have completely bought into the government line that benefit claimants are scroungers and deadbeats. This won’t be news to some people, but it needs pointing out for those who don’t realise. Some officers are very fair and helpful (I’ve certainly seen that), but some are not. In austerity, government disdain for benefit claimants can trickle down to officers who are supposed to be providing support services for benefit claimants. Trickle down may not work too well when it comes to sharing wealth with everyone, but it works very well indeed when it comes to sharing disdain.

Says the officer:

“Individual [council] managers will be pushing this [finding people intentionally homeless]. [They’ll be] saying, “let’s look at this… they’re [tenants] expected to pay this [rent] shortfall now. This is why we have benefit caps and LHA rates.”

“They have this idea that these people are sort of scrounging cunts – they should be paying their shortfall and if they don’t, we need to find them intentionally homeless…”


“Since 2010, you’ve got all the benefit porn on TV – this whole idea of unemployment and benefit claimants being scroungers and getting the blame for having to bail the bankers out… and that is coming into housing as well.”

Some of the “bullshit” intentional homelessness decisions that this officer has overturned at the review stage include an intentional homelessness finding against a woman who left a flat and the local area to get away from a man who’d raped her, and an intentional homelessness decision made in the case of a woman who was evicted for rent arrears after her abusive husband left and stopped paying rent.

Intentional homelessness decisions can have nasty repercussions. When a council decides that people have made themselves homeless intentionally, the council doesn’t help those people sort their homelessness problems out long term. It holds those people responsible for their homelessness.

I realise that’s a simple take, but simple is fine in this context. That is how people on the rough end experience intentional homelessness. I realise that the Homelessness Reduction Act should improve support to an extent, but I’m not talking about acts, or the rules that staff should follow in this post. I’m talking about the ways people can behave at a point in history when whole societies are encouraged to write benefit claimants off. I’m talking about officer mindsets in austerity. I’m talking about the contempt behind some decisions – the institutional contempt which can permeate minds and organisations at a time when political derision of claimants is rife.

The officer in this article says that this institutional contempt is notable in councils where there aren’t many local law centres or local welfare rights advisers to hold councils to account for housing and intentional homelessness decisions which are unfair and plain wrong.

Says the officer:

“[There was one council in Greater London] – when I went there to work, the council was getting away with murder.

Then… some solicitor joined the local Citizens’ Advice… she was shit hot. They [the council] didn’t know what hit them.

[The CAB] were getting [people coming in with bad] homelessness decisions [made by the council]. The solicitor was going back [to the council] and going, “what the hell are you doing?…I’m going to JR [Judicial Review] you and take you to court if you don’t do something.”

They [the council] were just like running around like their arses were on fire going, “we don’t know what to do now.”

“[The council saw these challenges to its poor housing decisions] like a total affront – like, “this is disgusting. Why should people be allowed to be covered by the law..?” [The council] saw it as like [the solicitor’s] fault… “Who does she think she is, upholding the law…?”

The officer also says that some staff can be needlessly picky when they check through people’s bank statements to decide whether or not people can afford a rent shortfall. Officers even sometimes quibble about the amount people spend on food.

This officer says that some staff will say that people could cut their food costs if they used foodbanks:

“I’ve heard people [in the office] say this – “they don’t need to spend money on food, they can go to a foodbank…”

At one council office, officers were encouraged to tell people with rent shortfalls to buy cheaper food:

“We were told to tell people they could cut their spending by getting a really cheap weekly shop at some supermarkets like Lidl,” and stuff like this.

…it’s penny pinching….it is like this whole attitude around austerity – you are on benefits, you are expected to be cutting back, you are expected to be living on nothing…and if you don’t pay your rent, we’re going to look at every fucking penny you spend and see whether you’re intentionally homeless…

It really isn’t legal and I can’t see a review officer upholding it, to be honest…”

You get the picture.


Here are longer transcript excerpts from the interview with the officer [paragraphs are not in order of interview].

I did not ask councils for statements this time (I did in the earlier articles with this officer) because so few of them answer and I am sick of that. Any council which wants to make a statement on this article can leave a comment:

On welfare reform, benefit and LHA caps, rent shortfalls and people falling into rent arrears and eviction:

“Since you’ve got the benefit caps and the LHA rates, or the rents are going higher than LHA rates, so the gaps [shortfalls between housing benefit and full rents] get bigger and bigger. So you get loads of people getting evicted because of arrears..

The landlords are saying, “I’m just going to evict this person, because it is not affordable for them any more.” They [the tenants] are not intentionally homeless because of that. That’s not their fault.

If [the landlord] is saying, “there’s arrears and this person hasn’t paid… they’re meant to be paying £30 topup a week on top of their housing benefit and they haven’t, then obviously you have to look through all the figures and how much housing benefit they get – how much they’re spending, how much their income is, how much they’re forking out and whether or not that £30 a week was affordable or not. Basically… if you’re on say £73 a week ESA [sic – JSA] – and you’ve got to pay out £30 a week of that on rent and you’ve got to pay out on your council tax, your gas and blah blah…that’s not going to be affordable, is it.


[An example of an incorrect intentional homeless decision] There was a woman in [borough name removed]. [She was in] private rented accommodation. Her husband was working and he was paying the rent out of his wages, because he was earning enough. Then, there was a domestic violence incident. There was an injunction and [he was] told to leave.

He goes and she makes a claim for housing benefit, because she can’t pay the rent. Housing Benefit didn’t pay anything. Housing Benefit said that her husband should be paying the rent even though he was gone and there was domestic violence and all that – so he should be paying the rent. The rent never got paid. She gets evicted and somebody made an intentionally homeless decision on it.

So [as the review officer], I made some enquiries – which was brilliant [not]. You try to ring up [the housing benefit department at this particular council]. You can’t speak to anybody. You have to email. This housing benefit officer emailed me back with his name.

So I ring up saying, “can I speak to this guy,” and they say, “No, they don’t have phones in Housing Benefit.” I was like, “what – no phones at all?” and they’re like, “Nah, you can’t speak to anyone. You have to email them.” It’s like – really?

Anyway – I spoke to them and got the story. It turned out she’s made a claim for housing benefit. [The council is] like, “why can’t the husband pay the rent?”

I’m like, “because he’s left. I don’t know where he is and he’s had an injunction against him because of domestic violence.”

Apparently, the housing benefit officer said, “oh yeah. That’s what everybody says,” and just kind of refused to agree the housing benefit claim.

It’s complete bullshit. Even the social workers I talked to at [this council] said, “yeah, we was involved.” Children’s services was involved, because they always get involved in domestic violence issues with children…

I said, “well – Housing Benefit seems to think that everybody just tries this.” They were like – “this is disgusting.” So – you make a couple of phone calls and you realise that the whole intentional homeless thing is just a load of bollocks. All they are doing is not..understanding the housing benefit decision… the housing benefit officer is an idiot. They’re just going, “well, the housing benefit officer decided that you’re not entitled to housing benefit, so I’m just going to agree with that.”

Homelessness officers – you get some fucking idiots in there, yeah, but they’re masterminds compared to some of the people in Housing Benefit. Some of these cases are just mad…

I had one case in [another borough]. This woman was living in [another part of the country]. She’d been raped. She moved to another part of the region. Then a couple of years later, she was out and she saw this guy who raped her. There was no police prosecution or anything.

She sees this guy again and he sort of recognised her and made comments and stuff like this so obviously she’s scared. So, she comes down to [a Greater London borough] because she’s got friends living there.

Somebody made her intentionally homeless. I said, “why? She got raped and all this.” They are like, “well, I overheard her friend say, “yeah, you’ll be all right. You’ll come down here and you’ll live near me.”

And I was like – “well, wouldn’t you [say that]? You know – your friend’s been raped and she’s scared that this rapist is living near her. You wouldn’t say, “Oh, go and live far away from me,” would you? You would say, “come over here and live near me.”

People just don’t get this. They [officers] just jump on this and say, “see – that just means that [the homeless person] just tried to leave the place,” and “it’s all contrived.”

They’re looking at these people who come in as homeless as sort of subhuman – “you’re all shit. You don’t deserve to live near friends or family or whatever…it’s not your right.”

It’s like the Haile in Waltham Forest case. Basically, this case law – this woman was living in a hostel, like a single person’s hostel, like a YMCA sort of place. She got pregnant and you weren’t allowed to have babies in the hostel and so she would have been evicted.

So, she left the hostel and went to the council.

Waltham Forest said, “you’re intentionally homeless, because you didn’t have to leave that hostel. You left of your own accord. You could have stayed for a lot longer.”

It went to court and they said, “no, she can’t be intentionally homeless, because it was pretty obvious that the accommodation wouldn’t be available to her once she’d had the baby.”

…and this threw everybody into a panic as well, because before then, a lot of councils were making decisions on this. You get an eviction notice and people leave accommodation after a section 21 or whatever. Then, they find they should have stayed there until the eviction notice – but if you note the landlord was actually selling the property, then the property would never be available. You can’t really say they’re intentionally homeless.

We had another case like this – where people left after the section 21 notice expired. The council said, “well, you could have stayed until the eviction notice and so you’re intentionally homeless.”

When it came to me as a review, I spoke to them [the family]. I said, “didn’t anybody tell you that you could stay until the eviction notice?” They said, “no nobody told us that.”

There’s no notes that anybody told them that, nothing specific. It’s like okay – well, you’re not intentionally homeless then, are you. They [council officers] expected somebody just to know that.”


“…but a lot of these [council officers], they’re just obsessed with intentional homelessness…

When you’re doing a case like this, you generally start by doing an income and expenditure form – so you’re asking how much [the tenant] is receiving and how much money they’re taking in, how much money they’re spending and all different things…

…and it’s like the obvious one [that officers pick on] is, “Oh, they’ve got Sky TV. They don’t need that. They’re paying £20 a week on Sky TV, or a mobile phone, so they don’t need that.” They [officers] don’t think… when you start reviewing cases and you go over all this, it’s a bit unfair to say somebody can’t have a mobile phone, or Sky TV…

…the thing is that [people] have contracts for these things. You sign up for Virgin Media or something… you’ve got like a year-long contract, so you sign off for this and after a couple of months, your housing benefit gets reduced, or your rent goes up, or you lose your job, or you have less [work] hours or something, and it suddenly becomes less affordable. You’ve still got a year’s contract to pay on this Virgin Media. Same with mobile phones. If you signed up for some contract, then you’ve still got to pay it. If you don’t, then you can get in more trouble.


“I’ve heard people [in the office] say this – “they [tenants in arrears] don’t need to spend money on food. They can go to a foodbank…” I’ve seen that coming up – people saying they [tenants who are struggling to pay rent] could go to a foodbank [to cut costs], or they could turn the heating off and use more blankets or something…”

It is bullshit… this is why review officers will kick it back. You know [that homeless people] have been through a horrible, stressful time… they’ve lost one house and they’ve been told, “you’re intentionally homeless,” so when it gets to the review stage and you’re actually looking at the law, you can’t really say, “you can actually go to a foodbank to get your food.” What food is in the foodbank? How do you know what’s there? When is it open? You go there and there might only be dog food there.

We were told to tell people they could cut their spending by getting a really cheap weekly shop at some supermarkets like Lidl, and stuff like this.

…it’s penny pinching….it is like this whole attitude around austerity – you are on benefits, you are expected to be cutting back, you are expected to be living on nothing…and if you don’t pay your rent, we’re going to look at every fucking penny you spend and see whether you’re intentionally homeless…

It really isn’t legal and I can’t see a review officer upholding it, to be honest…

>> You get loads of agency temps like it…[who are passionate about finding people intentionally homeless].

They seem to think…that it [finding people intentionally homeless] makes them good at their job – like “I’m a hired gun, so I can come in and make intentionally homeless decisions.”

There was [a temp] I worked with who was obsessed with intentional homelessness. All you could hear every day was, “this person is IH, this person is IH, I’m making this person IH…” The level of excitement that come with it…[but] half the cases were being chucked back at [this temp] when it got to the review stage.

Then [the temp would say] “why are they not upholding it [the intentional homelessness decisions] with the reviews? Why are they throwing the review cases back?”

Well – it’s because your decisions are shit. That’s why.

I don’t know [what happens] with cases where people haven’t found a solicitor [to appeal an intentional homelessness decision]. Not every area in London has a load of solicitors that are taking on more work.

If I see people, I tell them to go to a solicitor at least and get them to deal with it…but [not everyone will know to how to challenge a council decision]. An ordinary person being told that they’re intentionally homeless is just going to think – What do I do now?

When you’re looking at intentional homelessness… what you find, every council I’ve worked in is there is staff that are absolutely obsessed with it. This is the thing with intentional homelessness. It’s not like the council have a policy where they really want to find people intentionally homeless, or anything. They don’t want to house people generally, so anything that doesn’t involve housing somebody is good for them, but it is generally different members of staff [who make intentional homelessness decisions] and they are obsessed with it… especially if they’re evangelical Christians [laughs] but it’s true…

Someone I worked with in [a Greater London council] – everyone who came into the council [to make a homelessness application], this officer is like, “they’re intentionally homeless, they’re intentionally homeless, they’re intentionally homeless.” I ended up taking on a load of their cases, because they were so behind in their cases, because they were so intent on finding everybody intentionally homeless…

They don’t even want to look at the other elements of [someone’s housing problems]. A lot of it is just about rent arrears. Probably about seven out of ten possible intentional homelessness cases… comes down to rent arrears…

You can’t find somebody intentionally homeless if the property wasn’t going to continue to be available… they would have been homeless anyway, even if they paid the rent and everything. So it is completely irrelevant.

Social care is broken beyond repair – so what should replace it?

A RIGHT TO INDEPENDENT LIVING and a universal national independent living service paid for from direct taxation and free at the point of delivery, alongside the NHS, is the only way to solve the social care catastrophe that faces people of all ages in England and Wales.

The government has no credible proposals to offer following the dementia tax debacle during the election campaign. The long awaited Green Paper on social care has been delayed again until next May.

The panel of expert advisers appointed by government includes no disabled people or disabled people’s user-led organisations in open defiance of the UN disability committee and the Convention on the Rights of Persons with Disabilities.

Meanwhile local authorities (LAs) who are responsible for delivering social care face hundreds of millions of pounds in extra cuts to their budgets over the next four years. This is on top of the near 50% cut already made since 2010. New research from the University of Oxford has linked government cuts in adult social care and health spending to nearly 120,000 ‘excess’ deaths in England since 2010. Most of the deaths were among the over-60s and care home residents.

The situation is so bad LAs are now putting poor people’s personal contributions up so high that they are giving up their social care because they can’t afford it. So, we have the dangerous situation where people who have been assessed as needing care under the mis-named Care Act are losing it because it is too expensive. They are having to make appalling choices like: do I eat and pay my rent, or do I give up my care and independence? How can this be justified in a 21st century advanced western society with any claim to being civilised?

This is happening in Labour-controlled authorities as well as Tory ones. They are choosing to obey Tory austerity policy and financial legislation over their legal duties to disabled and older people under the Care Act. The political choice for elected councillors in austerity Britain in 2017 is whether to break the law. At present the penalties for not meeting legal duties under social care legislation are non-existent while for passing ‘illegal budgets’ they are high. So, LAs pass balanced budgets which result in disabled people becoming prisoners in their own homes, being told to wear nappies overnight because night care is too expensive, or going for days without human contact and ending up in hospital or dying.

We currently have a social care system based on the Poor Law principles of means and needs testing. The bottom line trumps everything. As council budgets are cut, so needs are no longer recognised or met. It is currently estimated that about one million people with social care needs don’t get any support.

Disabled people of all ages are in the process of designing a new vision based on rights and the UN Convention on the Rights of Persons with Disabilities (CRPD). We, the users of social care, are planning a service that will be led by us, not service providers whose main focus has become to meet budget targets (cuts) and ration the care based on neo-liberal ideology – not rights or need. Personalisation policy is dead. The Care Act is as useful as a wet paper bag.

So, what will address the requirements of an ageing and increasingly disabled population, with a complex mix of health, social care and poverty issues?

We start with the notion that we are disabled not by our impairments or long term health conditions, but by the barriers created in society that prevent us leading full and equal independent lives. This is called the social model of disability. We are committed to an inclusive definition of disabled people that includes people experiencing distress, with learning difficulties, long term and life-limiting conditions as well as physical and sensory impairments.

It also recognises the rights and interests of disabled children and disabled parents. From this follows the philosophy of independent living, based not on compensating for people’s ‘dependence’ but instead on making it possible for disabled people to live lives as equal as possible to non-disabled people.

Increasingly the biggest barrier is the rationed, privatised and failing social care system which is being starved of funds. We start from our lived experience – we know what works best for us.

So we are proposing to co-create a new universal right to independent living, enshrined in law and delivered through a new national independent living service managed by central government, led by disabled people, but delivered locally.

This local service will be shaped and delivered by user-led disabled people’s organisations, co-operatives and social enterprises. It will be for need not profit and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation. There is a much bigger job to do in helping the NHS move to adopting a social model of disability, distress and ageing. It will also demand an end to current discriminatory and cruel approaches to ‘welfare reform’ and instead advocate a new independent living based approach.

It will be about independent living in the broadest sense, not just social care and health. It will therefore need to be located in a cross-government body which can oversee implementation plans, whether it be in transport, education, housing, or social security.

This will ensure that independent living is mainstreamed in every area of activity, not just ghettoised in the DWP as the Office for Disability Issues is at the moment.

The social care element will need to have its own identity in a national independent living service. This will build on and learn the lessons from the Independent Living Fund, closed by the Coalition government in 2015. It will also learn from the experiences of user-led disabled people’s organisations (DPOs), user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-disabled allies who share the critique of the existing system and who work to the social models of disability and distress.

It’s also time we stopped thinking of supporting people to live independent lives as a ‘burden’ and instead as a wealth creator. This was the basis on which the NHS was created and it has been shown to work, improving the nation’s health, well-being and productivity. We know that a pennypinching approach to social care funding has disastrously perverse results: it undermines policies for prevention, leaving people’s health and wellbeing to deteriorate at even greater cost to the exchequer (even if we discount the costs to human happiness). We are also seeing its wasteful effects on the NHS, on accident and emergency departments and in so-called bed blocking.

Instead we can see social care as a social and economic generator. Rather than treat its 1.5 million workforce as a marginal pool of low grade, low skilled and low paid workers, we can begin to grow it as jewel in the service industry crown. Such support work could take its place as a source of valued jobs, skills and opportunities. Such employment would create wealth directly as well as indirectly, by providing support to enable people to maximise the quality of their lives and contribution to their communities.

Reconceiving social care in this way – with the primary concern being people’s wellbeing and independent living – also offers the prospect of an economy that is no longer reliant on jobs which robots will be able to do in the future or based on consumerist growth, with all the environmental and social problems these bring in its wake. It would take account of changing demographics and our increasing requirements for support during life’s course. Supporting, maintaining and improving people’s wellbeing would become a central aim of economic activity. Such a needs-based and person-centred approach would value us equally and be concerned with our needs whatever our role – worker, service user or citizen. It would offer the prospect of a truly sustainable and rightsbased economy and society.

These early ideas are being developed in conversations initiated by Disabled People Against Cuts (DPAC) and the DPOs in the Reclaiming Our Futures Alliance (ROFA), including Shaping Our Lives. Our demand is that going forward, the dual principles of the disability movement are applied – Nothing About Us, Without Us and Professionals On Tap, Not On Top!

  Peter Beresford is co-chair of Shaping Our Lives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.

  Mark Harrison is CEO of Equal Lives, a user-led disabled people’s organisation in the East of England, and senior research fellow of Social Action at the University of Suffolk.

Loneliness: the second cruel stigma Britain inflicts on disabled people

Frances Ryan the Guardian

Increasingly, I feel lucky to leave the house. That’s a strange feeling for someone to have, particularly someone in their early 30s. As a millennial, I know I should be concerned with my nonexistent pension or ever diminishing chance of buying a home – and I am, really. But as a disabled person, I’m aware that nowadays even basic parts of a normal life can’t be taken for granted: going to the office, meeting friends in the pub, even regularly seeing another human being.

New research from the disability charity Scope has found almost half of working-age disabled people are chronically lonely, saying they “always or often” feel lonely. Staggeringly, that works out at about 3 million lonely disabled people in Britain.

The Office for National Statistics has described Britain as “the loneliness capital of Europe” – finding that we’re less likely to have strong friendships or know our neighbours than inhabitants of any other country in the EU. Young people are said to be particularly affected.

But the Scope research points to what can only be called an epidemic of loneliness for disabled people in this country. It’s possible, of course, to be surrounded by people and still be lonely – but break down this week’s study, and this is about stark isolation. On a typical day, one in eight disabled people have less than a half-hour’s interaction with other people.

We’re rightly increasingly aware of how old age can lead to severe isolation – a recent study by the Jo Cox Commission on Loneliness found that almost three-quarters of older people in the UK are lonely – and the psychological and physical damage this can cause. However, we rarely talk about how, for a whole section of society, loneliness linked with disability and long-term health problems is a stain on decades of people’s lives. Perhaps one of the most disturbing findings of Scope’s research is how younger disabled people, like millennials generally, are affected: 85% of young disabled adults (classed as 18- to 34-year-olds) admit they feel lonely.

Beware of thinking that loneliness is some natural byproduct of disability. The strain of ill-health and disability can often lead someone to be isolated, but how society chooses to respond can either help fix it or compound it. I recently had a bad health spell that meant I was pretty much stuck in bed for two months. But even once I was better, I was very aware that – without support to leave the house or a relatively flexible job – I would still be in bed.

These sorts of fears are even stronger at a time when the government is dramatically underfunding the social care system, and tightening eligibility on disability benefits.

I speak daily to disabled people who are essentially cut off from society – twentysomethings unable to go to university, and not because of health problems but because they don’t have a social care package that enables them to get to lectures. Others are forced to be “put to bed” at 8pm because their council has restricted their care slots.

Increasingly I hear from disabled readers who for years have used the Motability car scheme to do something as basic as go to the shops but who, in their tens of thousands, are now housebound after cuts saw this benefit taken away. Or wheelchair users who haven’t been outside for months because, stuck in inaccessible housing, they can’t get beyond their own front door.

Last week the Guardian’s Disability Diaries chronicled how wheelchair users have to turn down invitations to see friends because the pub or restaurant – or public transport – isn’t accessible. It isn’t exactly surprising that disabled people are isolated when it’s still often impossible for us to get in the building.

But attitudes towards disability are also powerful barriers. Two-thirds of the British public admit that they actually feel uncomfortable talking to disabled people, according to separate Scope research. Worryingly, millennials are twice as likely as older people to feel awkward around disabled people: a fifth of 18- to 34-year-olds have actually avoided talking to a disabled person because they are unsure “how to communicate with them” – as if having a disability makes us a separate species.

It’s well established that there’s a stigma around admitting to loneliness – but for disabled people, a stigma around disability is contributing to loneliness. Imagine how lonely day-to-day life can be when the majority of the public avoid talking to you.

Whether it’s government policy removing our social care packages or a stranger ignoring us in the street, tackling this persistent idea that a disabled person is somehow different to other people – that we don’t want to work, laugh in a pub or go on a date – is going to be a crucial part of ending disability’s chronic loneliness.

Britain has a problem with isolating disabled people. Acknowledging that this actually matters is perhaps the first place to start.

Woman’s mental health ‘declined’ after council took two and a half years to complete support plan

Croydon council breached Care Act guidance before reneging on its own agreement, ombudsman finds

by Alex Turner on November 10, 2017 in Adults, Care Act 2014

A woman with life-limiting conditions, autism and Down’s syndrome was left with declining mental health after a local authority failed to complete her support plan for more than two and a half years.

A Local Government and Social Care Ombudsman investigation found Croydon council at fault in its treatment of the young woman, Ms C, and her father, Mr B, after she moved into its area in 2014.

Because of the council’s failures, which breached the Care Act 2014, Mr B had to use his own savings and borrow money from friends and family to support Ms C, the watchdog heard.

Nevertheless, she lost out on family holidays and activities as well as social time with people her own age, the investigation found. Her day-to-day routine, which was “very important to her ability to function and feel secure”, was disrupted.

“Mr B says Ms C has become withdrawn and her mental health has declined,” the ombudsman said. “Given that Ms C has a limited lifespan, the impact on a year of her life is greater than for most.”

Croydon council agreed to pay almost £5,000 to remedy the injustice, as well reimbursing direct payments it should have provided and changing its operating procedures.

Continuity of care

Care Act guidance stipulates how local authorities must ensure that people’s care and support – including carers’ packages – continues seamlessly when they move between local authorities.

Needs assessments and care plans are meant to be completed before individuals move. Where this is not possible, ‘receiving’ authorities should continue to fund care in line with existing arrangements.

In December 2014, Croydon council was informed by Ms C’s previous borough that she had moved to live with her father in the area at the end of June 2014 and it was now permanent.

While Croydon completed a care assessment in January 2015, its funding panel deferred a funding decision pending a carer’s assessment of Mr B, but this was not communicated to social workers.

The previous council had continued to fund Ms C’s direct payments so Mr B had not realised he needed to chase Croydon Council. The previous council also paid direct payments to Mr B to support him in his role as a carer. However, at the end of July 2016 Ms C’s direct payment account was empty and the previous council also stopped Mr B’s direct payment. Mr B contacted the previous council, which said it had passed Ms C’s case to Croydon.

Reneging on agreement

It took another seven months, and a formal complaint from Mr B, before Croydon acknowledged it had behaved incorrectly and failed to adhere to Care Act guidance. It agreed in writing to retrospectively pay £21,052 in line with Ms C’s existing support package.

However, the council then “reneged on what it had agreed”, saying it would instead pay out £11,673 in line with what Mr B had personally funded since August 2016. It also put no future support in place.

“Therefore Mr B was once again funding Ms C’s support from his own money, and had no support in his caring role,” the ombudsman said.

In conclusion, the investigation report said that while there were no defined timescales for completing support plans, two and a half years was “clearly too long”.

It said Ms C had become ordinarily resident in Croydon when she chose to move to the borough in June 2014. Croydon became responsible for her care from that date, “and certainly from December 2014” when it was told her move was permanent.

Croydon had also caused injustice to Ms C and both her father and mother, whom she had previously lived with, and left Mr B with a “lack of trust” in the council.

‘Considerable strain’

“This situation has placed considerable strain on the family; the father has come close to not being able to pay his mortgage and other bills,” said Michael King, the Local Government and Social Care Ombudsman. “The council has failed in its duties under the Care Act, which states it should have ensured continuity of care for the family when the woman moved into its area.”

A Croydon council spokesperson said the local authority “very much regretted” that the funding to continue Ms C’s care and support was not initially agreed when she relocated to the borough.

“We have reimbursed the family in full for her care and support package and compensated the client and her family for the distress this has caused,” the spokesperson said. “A comprehensive care plan is now in place and we have reviewed and strengthened our procedures to ensure continuation of care when a client relocates.”

Croydon has also informed its funding panel members of the duty the council has under the Care Act 2014 to those that move into the borough

Green paper on older people’s social care to be published by summer 2018

Government says it will “listen to the perspectives of experts and care users, to build consensus around reforms which can succeed”

The government will publish a green paper on social care for older people by summer 2018, it announced today.

In advance of the paper it has invited a number of people to provide advice, including representatives from social care and health organisations – such as Sir David Behan, chief executive of the Care Quality Commission – as well as from the financial industry. Among these are Nigel Wilson, chief executive of Legal and General, the insurance and life cover group.

Also invited is Sir Andrew Dilnot, the former chair of the Commission on the Funding of Care and Support. It reported in 2011 and its recommendation to introduce a lifetime cap on care costs was put into law through the Care Act 2014 but has not yet been implemented.

However, there are no representatives from social care professional bodies or service user groups on the list of invitees, although the government said it would “work with independent experts, stakeholders and users to shape the long-term reforms that will be proposed in the green paper”.

Damian Green, the First Secretary of State and minister for the Cabinet Office, said: “An ageing population needs a long-term solution for care, but building a sustainable support system will require some big decisions.

‘Build consensus’

“In developing the green paper, it is right that we take the time needed to debate the many complex issues and listen to the perspectives of experts and care users, to build consensus around reforms which can succeed.”

The green paper will be subject to a full public consultation after it is published in summer 2018.

Jeremy Hughes, chief executive of the Alzheimer’s Society, said it was “reassured” that the government was “setting out its commitment to address the social care crisis so that real action can begin”.

He added: “The [2017 general] election showed that the public are hungry for social care reform, but with the paper not expected until summer, they will have had another year of waiting. If there has been no true progress by then we, and people with dementia, will be asking big questions of the government.”

Working-age adults

Margaret Willcox, president of the Association of Directors of Adult Social Services (ADASS), also welcomed news of the green paper, saying: “It is right that all members of society, many of whom are likely to need some form of care in their lives, will have a say on the future funding of care and delivery of care services.

“We are also encouraged that the Government will undertake a parallel programme of work focusing on issues for working-age adults, as financial pressures due to the increasing care needs of younger adults with disabilities or mental health problems are now greater than those due to supporting older people, which our Budget survey highlighted this year.

“This Paper presents a once in a lifetime opportunity to reform adult social care for everyone who needs it and to address the issue of funding after 2020 when the extra £2 billion for social care runs out.”

Dr Anna Dixon, chief executive of the Centre for Ageing Better, welcomed the government’s plans to consult with care users ahead of the publication of the green paper.

She said: “As the Government have recognised in their announcement today, we need a long-term sustainable funding solution for adult social care that means everyone has good access to good quality social care when they need it. Action also needs to be taken now, including increased funding for social care in the autumn budget.”

Being the Boss – Providing a coherent voice in the wider community

During the last few months Sandra Daniels and Bob Williams Findlay, two new directors of Being the Boss, have facilitated several discussions with attendees at the Fairways Day Centre, to support them to speak up about how they are feeling and to understand more about why Birmingham City Council are proposing to close the Fairways Day Centre.

Sandra and Bob have come into Being the Boss to help revitalise it as the national network of disabled people who employ their own personal assistants. Given the current climate it is essential to establish Being the Boss as the advocate for disabled people who employ their own personal assistants because all forms of living independent lives is under threat.

Alongside maintaining Being the Boss’s service/role as ‘providing peer support and a coherent voice for them in the wider community’ we want to strengthen it by making ‘being their advocate’ more visible and proactive. Not only that, it would pave the way for Being the Boss developing other areas of advocacy work. Might be useful to seek if we have a common understanding of what advocacy means:

Advocacy in all its forms seeks to ensure that people, particularly those who are disempowered by society, are able to:

Have their voice heard on issues that are important to them.

Defend and safeguard their rights.

Have their views and wishes genuinely considered when decisions are being made about their lives.

Advocacy is a process of supporting and enabling people to:

Express their views and concerns.

Access information and services.

Defend and promote their rights and responsibilities.

Explore choices and options

Many people who have personal assistants may wonder what they have in common with attendees of a Day Centre, but we hope this insight into how one group of disabled people who are being denied a voice, let alone the right to exercise choice and control, are in a similar position to those who are fighting to defend independent living.

What is happening in Birmingham also illustrates why advocacy work is so important. Like other local authorities Birmingham is taking an axe to many services and denying service users a voice of their own. Until last year Sandra was employed to work for a self advocacy project called People First Birmingham. During Birmingham City Councils rounds of funding cuts in 16/17 Birmingham City Council decided to withdraw funding for community advocacy, leaving a gap that has impacted on how disabled people can speak up as a community and take part in the local democratic process.

In 1992 Bob was a Planning Officer in Birmingham Social Services Department with responsibility for services for people with physical impairments. I was charged with writing, alongside others, a plan to modernise the old Welfare Centres – transforming them from places where disabled people were simply ‘warehoused’ to resource based centres where people could attend and engage in social activities. Much of what takes place at Fairways Day Centre today still draws upon this ethos, but twenty-five years on, many things have changed, but others have stayed the same or slipped back.

Working as advocates Sandra and Bob discovered that the attendees of the Fairways Day Centre questioned to what extent Birmingham City Council understood how the decision making process the Council adopted in relation to the proposed closure had failed to give any consideration to the following facts:

a) That they may wish to speak with a collective voice [supported by independent advocates] to express their concerns and to defend their right as Birmingham citizens to view themselves as an active, longstanding community.

b) That by focusing upon individual social work assessments the Council are failing to see and treat them as people who are part of a community with choices and rights. Users of the Centre feel they have been reduced to the status of ‘problems that cost money’,

c) That the approach taken has shown no due regard for their Human Rights, thus undermining their dignity and completely ignoring how their sense of community enhances their health and well-being.

In our opinion these views are backed up by the Council’s inadequate and misleading comment that: “The users will receive their services elsewhere.”

To our knowledge what has been placed on the table is a number of ‘services’ which completely fail to address the fact that the attendees view themselves as an established community. It is hard to see how Councillor Paulette Hamilton can talk about ‘dignity and respect’ when disabled people are reduced in status to being regarded simply as in ‘receipt of a service’.

Not once, but twice, Birmingham City Council voted to work within the social approach towards disability.  As professionals and disability rights activists with many years experience between us, we can’t see any evidence to suggest that Birmingham Adult Social Care operates within such a framework. What continues is an outdated and oppressive approach which disabled people and their organisations have opposed for the last thirty years. Birmingham City Council is fixated with people’s conditions and health well-being divorced from the social contexts in which people live. The Council fails to adopt a holistic approach which would place people’s health needs within the context of how social environments restrict those of us with impairments. The Council’s Adult Social Care services see people’s impairments as the problem which leads to the services providers not seeing the bigger picture. The advocated social approach seeks to enable and empower disabled people with appropriate support to overcome disabling barriers with their lives.  

Councillor Hamilton claimed last year that the Council worked within the framework of the UN Convention on the Rights of Disabled People – however Disabled People Against Cuts West Midlands disputed this claim then and still do. The Council does not understand Article 19 of the Convention and that’s clear from its treatment of the people who attend the Fairways.

Fairways is not just a service, it is part and parcel of people’s lifestyles; lifestyles which arise not simply because of the existence of impairment, but also due to society’s inadequate and disabling provision within mainstream social activities. Disabled people have little choice and control over their lives, now Birmingham City Council wish to reduce it further for some of them.

Frequently asked questions for ILF users and other people with high support needs


This guide has been written to help ILF users understand legal and practical issues about community care assessments and support and how it will apply to them following the closure of the ILF in June 2015.  A guide was developed by Kate Whittaker – a consultant solicitor at Scott-Moncrieff & Associates – ILF users, Inclusion London and Disability Sheffield Centre for Independent Living.  This guide is also available in easy-read.

Other useful resources

 • The Department of Health’s guide to the Care Act in easy read  https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/365345/Making_Sure_the_Care_Act_Works_EASY_READ.pdf

 • The Care Act 2014 – a presentation by barrister Steve Broach (Monckton Chambers)

 • http://ilfaction.net/wp-content/uploads/2015/05/Care-Act-Training-Slides.pdf

  • Irvin Mitchell Solicitors’ Care Act factsheets and precedent letters http://www.irwinmitchell.com/personal/protecting-your-rights/social-healthcare-law/the-care-act/care-act-factsheets-and-template-letters

 • Carers UK guide to the Care Act 2014 for carers http://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/care-act-faq

 • A comprehensive guide about financial assessments and the arrangements for charging for local authority adult social care is available from Age UK

 • http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/FS46_Paying_for_care_and_support_at_home_fcs.pdf?dtrk=true

 • Age UK Factsheet about eligibility for NHS funded continuing care:

 • www.ageuk.org.uk/Documents/

What to do if things go wrong?

If things go wrong or you think local authority did not follow the law, you should get specialist advice, and possibly legal advice.

Many DDPOs offer information advice and advocacy support.  You can use our DDPO directory to find a DDPO that might help. Use the find a legal adviser tool to find solicitor firms, advice agencies or charities that can offer community care advice.

You can also find information on where to get legal advice on our website.

Cerebra’s Problem Solving Toolkit has excellent suggestions on the approaches to tackle common problems with health and social care.

Cerebra’s Difficultbox website has links to factsheets, precedent letters and contact details of local advice agencies.

Scope’s interactive guide Cuts or Changes to Social Care has specific suggestions on how to tackle common problems and information on complaints procedure, going to the ombudsman and getting professional advice.

The implications of Brexit

for disability rights

Influencing future debate and policy

Anna Lawson and Liz Sayce

June 2017

About Disability Rights UK

We are disabled people leading change, working for equal participation for all. We have been delighted to work with Leeds University’s Professor Anna Lawson on this project.

We would like to thank:

all the people who attended the DR UK event and contributed ideas and experience to this project

all the disabled people and disability organisations interviewed for this project

partner organisations who invited us to contribute to their discussions

people working on Brexit and equalities who discussed the issues with us

Nick Ash and Philip Connolly for organising the DR UK event and interviews

Finally, we are particularly grateful to The Legal Education Foundation (LEF) for funding this piece of work. We hope our recommendations will enable The LEF to understand the needs of the disability sector at this time and we look forward to helping further shape any ideas for Brexit-related initiatives or themes for grant programmes that might fall within the Foundation’s criteria.


Disabled people make up one in five of the UK population and will be affected in specific ways by policy and legislative change flowing from the decision for the UK to leave the EU; yet disability has been barely mentioned in public and policy debate on the implications of Brexit.

This report explores the key priorities of disabled people for a post-Brexit Britain and for the period leading up to leaving the EU; sets out a Manifesto based on discussions with disabled people and allies; and explores ways in which disabled people, our organisations and allies could become more influential in public and policy debate on these issues. The hope is that it will stimulate engagement, enrich debate and support disabled people to influence post-Brexit disability rights.

We start from the position of seeking to bring people together to debate the priorities for a post-EU Britain, irrespective of how people voted in the Referendum. Our report takes no position on the merits or demerits of leaving the EU. This is important not least because disabled people are highly diverse in terms of employment status, age, ethnicity, gender, region, impairment experience and other factors. Like other segments of the population, they hold a range of views on Brexit itself and its implications. For example:

Cross-bench (and disabled) peer Lord Colin Low stated in a Debate in the Lords on 2 February 2017: ‘When we debated the question of withdrawing from the EU last June, I said it was clear to me that disabled people would get a much better deal by remaining within the EU. In my experience, it has always been possible to get much more for disabled people from the EU than from our own Government, of whatever complexion. Now that we have decided to leave, it is important to make sure that the benefits disabled people presently derive from being in the EU are maintained by the United Kingdom. Most of the benefits come from the single market. To take just three examples… [public procurement, accessibility of the world-wide web and accessibility of goods and services]’

Papworth Trust (2016) undertook a web-based open survey which attracted 2036 respondents, both disabled people and ‘disability workers’. Disabled people appeared more likely to favour leaving the EU (54% to 42%, with 4% unprepared to say) than the overall UK population (who voted 52% to 48% in favour of leave). Whilst the survey is not based on a random or representative sample, this apparent greater desire to leave might reflect the age profile, greater likelihood of poverty and of having low or no qualifications amongst disabled people, all factors to some degree associated with favouring leaving the EU – although these associations are not straightforward (See Britain Thinks 2017).

There is no consensus amongst disabled people on Brexit but the Manifesto shows that there is more consensus on what people want post-Brexit.

The report has been written as part of a Disability Rights UK (DR UK) project, funded by the Legal Education Foundation (LEF). It is based on:

Issues raised by disabled people and their organisations at a DR UK event held in March 2017 attended by over 40 delegates from a range of large and smaller disability organisations, including Centres for Independent Living, charities (e.g. Mencap, Scope, Papworth Trust, Motor Neurone Disease Association), Trade Unions and individual disabled people. This built on an earlier discussion at DR UK’s AGM in November 2016

DR UK’s participation in five additional events on influencing Brexit debate and policy in relation to equality and/or disability held by: the European Network for Independent Living (which we supported and promoted), the Thomas Paine Initiative (at which we spoke), the Equality and Diversity Forum, the Joseph Rowntree Reform Trust and Cloisters Law Firm

Interviews with another 20 Disabled People’s Organisations (DPOs) and disabled people, with particular perspectives on influencing the post-Brexit world

An on-line questionnaire and request for views by email from Disability Rights UK members

Analysis by Professor Anna Lawson of the legislative and policy background on the range of identified disability-related issues and concerns relevant to the UK’s departure from the EU, the negotiation of a new UK-EU relationship and the opportunities to reaffirm and entrench disability rights in UK law and policy

Discussions with individuals working on disability and Brexit including at the Equality and Human Rights Commission and in Government.

The report is divided into six main chapters. The first discusses disabled people’s priorities, based on our engagement plus other sources. The second provides a very brief outline of the nature and scope of EU disability law and policy and thus provides some context for the subsequent discussion. Chapter 3 focuses broadly on the embedding of disability rights within UK law and policy after Brexit. Chapter 4 addresses funding issues. Chapter 5 focuses on issues connected with freedom of movement of people and citizenship. The final Chapter proposes ways forward to enhance the influence of the disability sector on disabled people’s rights post-Brexit.

The report has been written on the assumption that, as indicated by the Government in February 2017, the UK will not be seeking membership of the European Economic Area or single market.

Chapter 1: Disabled people’s priorities

Disabled people have expressed to us and in other forums a range of general issues of concern or hope in the context of the major change of Brexit. These include:

The concern that debate on Brexit seems to be all about trade, rather than the kind of society we want to live in. In as far as rights are discussed in a Brexit context, the most common issue flagged seems to be “workers’ rights”. These are vital, including to disabled people – but over half of disabled people of working age are not working, many more are in receipt of pensions and this focus omits attention to rights in areas such as accessibility, which are important whether or not people are ‘workers’. Some people we spoke to have welcomed the contribution of the EHRC that broadened the debate:

‘We’ve had calls for all kinds of Brexit. A soft Brexit, a hard Brexit and a red, white and blue Brexit. No one is talking about a fair Brexit – one that will unite the country and lead us to a shared society based on fairness and mutual respect the Prime Minister has talked about’ (David Isaac, 2017 ).

This indicates a need for the disability sector, working with others, to re-frame the Brexit debate and put disability rights at its heart.

The concern that in the UK disabled people have too little awareness of their rights and what they can achieve – which makes it harder to explain what is at stake when we leave the EU and to facilitate engagement by disabled people across the country.

 ‘I don't think we have enough emphasis on educating people with disabilities about human rights in this country and also the legal framework…..I think if people had a greater understanding, both people with disabilities but also those without disabilities, of what rights mean to them, and also how the law works to protect them, then we might not be in the situation where we are constantly having to say these are our rights and this is why we need them’ (Participant in DR UK round-table 29 March 2017)

This suggests both a medium-term aim of improving disabled people’s knowledge and use of rights, an aim DR UK is pursuing vigorously through a new project called Right to Participate (which includes an innovative interactive guide to increase disabled people’s understanding of their legal rights), and a shorter-term communications effort to explain rights and the impact of Brexit to disabled people.

The fear that important UK Government action will stall because virtually all civil service and Ministerial energies go into Brexit. For instance, the UK Government is being examined in 2017 by the UN Committee on the Rights of Persons with Disabilities; and Disabled People’s Organisations (DPOs) hope for a clear action plan following the Committee’s concluding observations on the major human rights issues identified (see www.disabilityrightsuk.org/news/2017/january/disabled-people-tell-un-committee-uk-failing-international-rights-convention). However, if Government attention is channelled overwhelmingly into Brexit, will there be any chance this hope will be realised?

We are not alone in fearing that important social reform will go on the back burner in favour of Brexit, which has been described by Sir Jeremy Heywood, Cabinet Secretary, as ‘the biggest, most complex challenge facing the civil service in our peacetime history’. For example:

‘There is a danger that Brexit could suck all the oxygen out of attempts to implement a sweeping programme of social and economic reform that is badly needed at home’ (Campbell Robb, CEO, Joseph Rowntree Foundation)

This suggests a need for unified, focused campaigning to press Government to act on major human rights issues. Disability groups are working closely together on the UNCRPD examination with the aim of achieving this.

Hopes of gains from leaving the EU. The Papworth Trust survey of disabled people and disability workers found that more people thought life would get better after Brexit in the following areas than thought they would get worse: people’s chances of getting a job, the NHS, the education system.

Whether simply leaving the EU will achieve these positive changes is open to debate – but learning for disability organisations about these expectations could mean building these priority issues into campaign planning (distinct from campaigns on Brexit itself). There may be an appetite for involvement in campaigns on education, the NHS and better job opportunities for disabled people. For instance, DR UK and others are working hard to influence Government to expand its plans to achieve its goal of halving the disability employment gap, going beyond the relatively narrow intentions in its 2017 Green Paper and influencing industrial strategy, skills and more.

Most comments from disabled people, however, have focused on more specific implications of Brexit itself – as follows.

1.1 Embedding Disability Rights in UK (and Devolved) Law and Policy

Disabled people have raised with us the importance of:

preserving existing disability rights

‘no regression’ or watering down of those rights and

in future, continuing progress – to keep ahead of the curve, not be left behind by other EU countries

The legislative and policy detail of these points is explored in Chapter 3. The specific issues raised most commonly with us were:

Fear of losing existing rights, for instance:

‘We must be very, very sure…that the status quo won’t be worse after the Brexit. There are so many laws; there are for example the 2006 aviation regulations - airlines not to discriminate against disabled passengers. That is not in the Equality Act. If we're losing this - and this is just one example and I can give 10 others - if you lose this law, this country goes back quite a long way in two years. Or regulation on the manufacturing of buses (it is not allowed for public bus companies to produce buses which are not low floor). That would never be a national law normally; it was made by the EU’. (Contributor at DR UK round-table, 29 March 2017)

Other specific rights mentioned were website accessibility, manufactured goods and accessibility in procurement processes.

‘And, whatever you do, please ensure that you and disabled people's organisations all over Europe, lobby hard to prevent our Prime Minister, Teresa May from fulfilling her wish to leave the European Convention on Human Rights post Brexit, should she win the 2020 general election’ (Baroness Jane Campbell, presentation to European Network for Independent Living event on Brexit, 2017)

‘No regression’ – for instance, no watering legislation down by incorporating primary EU law but not important secondary legislation; and no amendment to incorporated EU law without proper parliamentary scrutiny.

‘The main concern of mine, shared by many others I have spoken with in the disability sphere, is that unless [EU rights important to disabled people] are specifically highlighted during Brexit negotiations most will then simply be disregarded and seen as being ‘unnecessary red tape’ once the UK formally leaves the EU…..There are literally thousands of regulations and rules governing the design, functionality and usability of almost every product and object in the home and general environment, indoors and outdoors, which contain elements of disability related consideration. Achieving this has often involved painstaking and careful lobbying and dialogue between disability organisations, companies and industry representatives, often taking years……There is real concern within disability organisations that following the UK’s actual exit from the EU in 2019, most of the rules and regulations will then quickly be discarded, either wholly or in part, in the apparent interests of easier corporate competition or free trade’

Continuing progress: ensuring the UK continues to aim to be ahead of the curve and does not fall behind other EU countries as they continue to develop. For instance, an EU Accessibility Act is currently being negotiated. It would make a big difference in areas like accessibility standards for manufactured goods, computers, mobile phones and TV set top boxes. It is important that the UK does nothing at this stage to obstruct it; and that if possible it is passed before the UK leaves the EU, so that it becomes part of the EU legislation incorporated into UK law.

In future there may also be important new developments in EU legislation in relation to employment of disabled people, or education; and the UK must not be left behind.


This suggests that there is a clear appetite to both safeguard and develop significant rights. This agenda could form the basis for lobbying and influencing.


1.2 Funding

NCVO (2016) estimates that UK charities benefit from over £300 million in EU funding per year. In the disability sector, this seems particularly to affect larger disability charities: smaller DPOs typically are less likely to bid for EU funding.

Some parts of the UK have benefited particularly from EU funding, for instance:

‘Northern Ireland is a net recipient of funds, both from the UK Exchequer and also from the EU as a whole, on a pro rata basis. We have a very real threat of a funding crisis. When those funds from the European Union cease, it is unlikely that a Conservative party with no Northern Ireland MPs and very few votes will replace those funds in Northern Ireland, and I think it is even less likely a Labour Party will replace those funds, as they don't even allow their members to stand for election in Northern Ireland. Therefore, there is a fear the funds that come from European Union monies, particularly in respect of Civil Society organisations, particularly in respect of DPOs, particularly in respect of wider voluntary sector groups, that these monies will go, they will not be replaced and there will be a dearth of representation of people with disabilities in Northern Ireland because these organisations cannot sustain themselves. Northern Ireland is a very heavily public sector funded entity, and with the absence of these European funds, predicated on the basis that the UK Exchequer will not replace them, then there is a very real crisis in terms of espousing the voice for people with disabilities in Northern Ireland’. (Patrick Malone, Disability Action Northern Ireland, March 2017)

In addition, disabled people can benefit significantly from EU research funding, likely to be hit by the UK leaving the EU. There is a lively cross-European network of disability researchers (e.g. The Academic Network of European Disability Experts (ANED) at www.disability-europe.net/). Their work focuses on issues of concern to disabled people such as independent living and political participation.

This suggests that the disability sector needs to lobby just as hard as the farming or university sectors for replacement funding where EU funding is lost.


1.3 Freedom of Movement

At DR UK’s March 2017 event on Brexit, disabled journalist Christiane Link spoke powerfully of the fears that disabled people from non-UK EU countries face in the lead-up to Brexit:

‘I'm a journalist and I have worked for media outlets for nearly 10 years now in the UK. I came here from Germany to work for the BBC and I'm one of the EU migrants who from one day to another became scapegoats for this country and I'm quite surprised with what has happened in this country. After the referendum I looked to how to secure my status here; for 10 years that was never ever a topic - I showed my German passport everywhere and was treated like a British citizen and it was never a topic. Then more and more EEA citizens started to apply for permanent residence. It's a card that confirms your status that you're here for more than five years and are exercising treaty rights… It gives you the right still at the moment to go to every EU country and stay there and work there as long as you want and after 5 years you have permanent residence which is the same as indefinite leave to remain for non-EEA citizens.

I found a Facebook group which maybe at that time had 5,000 members all EEA citizens who wanted the permanent residence card. There were lawyers at the time giving free advice… I noticed that that there are several groups in this group who can't apply for a permanent residence card, [some] strongly related to the topic of disability. These are disabled people who have lived here for quite a long time but never exercised treaty rights’.)  

Christiane went on to explain that people were seeking permanent residence in the new climate, to secure their status, but often being refused. The Home Office, she explained, had not published overall data on reasons for refusals but one key reason was not being ‘self-sufficient’ – which might be because you have developed an impairment whilst in the UK, or because you are a full-time carer, or because you have had a disabled child, or because you are unable to get ‘comprehensive health insurance’ – one of the criteria for being self-sufficient, which is extremely hard to obtain if you have pre-existing conditions.

This suggests the disability sector needs to scrutinise in detail plans for the status of EEA nationals – with the aim of removing discriminatory provisions impacting on disabled people.

Another major issue concerns the Personal Assistants that many disabled people employ, using their personal budgets from local authorities, or their own funds. Disabled people told us that they often employed PAs from other EU countries.

‘I declare an interest as someone who has employed personal assistants from at least 10 EU countries during the past 25 years. I am not unusual. There are thousands of disabled people who do the same. Our personal assistants—some call them carers—are a mixture of UK and EU nationals. They are crucial to our independence and our freedom to enjoy a private and family life, to work, to socialise and to raise children. Our employees are funded mainly by social care or healthcare personal budgets. During the past 30 years, increasing numbers of disabled people have become employers.

When preparing for this debate, I searched for data on how many EU nationals were employed as personal assistants. I contacted the United Kingdom Homecare Association and independent living PA agencies, such as Independent Living Alternatives and PA Pool. No specific data were available but we know there are more than 70,000 EU citizens working in social care. I then contacted disabled employers through social media platforms to find out more about their reasons for seeking personal assistants from EU countries.

Everyone I heard from said first that the pool of potential UK employees was drying up, yet demand for care workers continued to rise. The EU workforce was therefore an essential supplement, and all were concerned about moves to restrict it. Other reasons given for recruiting EU nationals were a strong work ethic and reliability, and the fact that the job tends to attract single people, who, as a rule, are found to be more flexible in their working hours, giving much-valued opportunities for spontaneity. They are keen to fill live-in employment positions. This helps disabled people who live in rural villages where local employees are limited. Some commute to and from their home countries between work stints. Such flexibility is a win-win situation for both employers and employees.

I spoke also to John Evans, a quadriplegic man and pioneer of independent living for disabled people in the UK and internationally. He said:

“I have been free from residential care for 34 years, employing my own PAs who support me to have full control of my life. They have come from 15 different EU countries. Without their support I could not do my work at home and abroad. If the Government does not make some kind of arrangement to protect our access to the EU PA workforce, I will lose my freedom again”,

and he will have to return to residential care. We constantly hear about the threat to the NHS if restrictions to work in the UK are tightened. The PAs and carers employed by thousands of disabled people must be accorded the same attention; otherwise, the current social care crisis will worsen and disabled people will lose the right to independent living, as set out in Article 19 of the UN convention.

The Equality and Human Rights Commission shares my concern. In its evidence to the Joint Committee on Human Rights’ Brexit inquiry, it said that any change in Immigration Rules,

“should be subject to a rigorous equality and human rights impact assessment”.

Will the Minister assure the House that this assessment will be carried out rigorously and shared with Parliament? Will he also guarantee that disabled people and their organisations will be thoroughly involved in any Brexit developments regarding access to the EU workforce? Our independence depends on it.’ (Baroness Jane Campbell, House of Lords, 2 February 2017)

This suggests that the impact of the loss of the EU workforce on disabled people’s independence must become part of the debate on freedom of movement – alongside the importance of staff in health and social care more broadly.

We also heard about the potential difficulties for both British Citizens living in other EU countries and EU citizens living in the UK, if there are not adequate reciprocal arrangements on healthcare (currently provided through the EHIC card) and social security. For instance:

if disabled British citizens living in Spain can no longer use Spanish health services unless they buy comprehensive health insurance – but cannot buy it because of lack of cover for pre-existing conditions – then will they need to return to the UK, and vice versa for Spanish disabled citizens living in the UK?

if an EU citizen living in Britain is working, and claims Personal Independent Payment and Access to Work – covering extra costs of disability and necessary adjustments – will they in future be viewed as ‘self-sufficient’?

We also heard of a specific cross-border issue affecting people in Northern Ireland: some people from the North use health services across the border, through reciprocal arrangements. This helps people to get to the most relevant service, which is particularly important in rural areas. This arrangement is likely to stop with Brexit. Without much-improved accessible transport this may pose a particular challenge to disabled people needing to access healthcare.

Chapter 2: European Union Disability Law and Policy: Summary Overview

A key driver of current EU disability policy is the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The EU played an active part in the UN Ad Hoc Committee which drafted the terms of the CRPD and, in December 2010, the EU ratified (or formally confirmed) the CRPD and thereby became a party to a UN human rights treaty for the first time.

The EU’s initial report on its implementation of the CRPD was submitted to the UN Committee on the Rights of Persons with Disabilities (CRPD Committee) in June 2014 and provides what is the most comprehensive account to date of how various EU actions (including legislation, funding, schemes for mutual co-operation and recognition, data collection mechanisms, research, dialogue, good practice exchange and training) have been harnessed to align the rules and practices of EU institutions more closely to the CRPD and to support Member States (including the UK) in their CRPD implementation efforts. After a constructive dialogue with the EU in the autumn of 2015, the CRPD Committee published its Concluding Observations on the EU which include various recommendations. These, together with the critique provided in the shadow or alternative reports submitted by a range of EU-level disabled people’s organisations provide additional useful information and perspective on EU disability law and policy.

Particularly high profile examples of EU action on disability rights take the form of legislation binding on Member States. Examples include:

– the Employment Equality Directive of 2000, which requires Member States to prohibit disability discrimination in employment;

– the Air Passenger Rights Regulation of 2006 (together with similar regulations on rail, ship and coach travel), which requires disabled people to be given assistance when travelling by plane in EU and European Economic Area (EEA) countries;

– the EU Medicinal Products for Human Use Directive 2004, which requires the packaging of medicinal products to include Braille labelling;

– the Public Procurement Directives of 2014, which require public bodies to include accessibility in technical specifications; and

– the Public Sector Websites and Mobile Applications Directive of 2016, which requires public sector bodies to ensure that their websites and mobile apps comply with accessibility standards so that they can be used by disabled people.

The opportunities of the EU to introduce legislation are limited, however, by both the competences (or powers) granted to it in its two underpinning treaties and by the political commitment and co-operation of Member States. It is therefore important to recognise that EU action in the disability context takes many forms other than that of legislation. Examples include:

– providing funding for EU-level disabled people’s organisations – according to the EU’s report submitted to the CRPD Committee, “Since 2010, grants directly aimed at supporting and strengthening the operational and advocacy capacity of EU-level organisations have been awarded annually …. In 2015–2017, EUR 2.2-3 million will be available annually to such support, and a partnership has been established with eight leading EU-level NGOs representing a diversity of disabilities and stakeholders. Their work programmes support the implementation of the Convention and the Disability Strategy …”;

– embedding disability rights conditions in the spending of EU funds – e.g. in the current Structural Funds Regulations in which ex-ante conditionalities include independent living and in which accessibility and non-discrimination have cross-cutting relevance;

– mutual recognition schemes – such as the EU Parking Badge scheme and the E111 scheme;

– the generation, dissemination and analysis of disability-related data – e.g. in the work of Eurostat, the EU Agency for Fundamental Rights and the EU Academic Network of European Disability Experts (including its Disability Online Tool of the Commission); and

– fora for exchanging and developing good practice – such as the Disability High Level Group, Equinet and the European Commission’s annual Work Forum on the CRPD.

In 2010, the European Commission published the European Disability Strategy 2010-2020 (EDS). Although this was described in the EU’s initial report to the CRPD Committee as setting out the “EU’s policy on disability”, concern was expressed both by the European Disability Forum (EDF) and the CRPD Committee, that it is in fact a European Commission strategy which does not necessarily shape the strategic commitments or priorities of other EU institutions. The overall aim of the EDS is to “empower people with disabilities so that they can enjoy their full rights, and benefit fully from participating in society and in the European economy …”. Its opening paragraphs repeatedly refer to the CRPD and the key role it played in shaping the EDS. Whilst it is concerned with EU-level actions, frequent reference is made to the fact that these will operate to supplement and support national initiatives.

The main body of the European Disability Strategy identifies eight priority “areas for Action” – “accessibility”, “participation”, “equality”, “employment”, “education and training”, “social protection”, “health” and “external action”. Commitments to EU action in these areas (including by proposing legislation which would bind Member States – such as a European Accessibility Act - and other action to supplement and support national-level initiatives) are underpinned by commitments to provide cross-cutting support in the form of initiatives relating to awareness-raising, financial support through EU funds, data, statistics and monitoring, and CRPD-related governance. A report on progress in the implementation of the Strategy, and on actions in response to the CRPD Committee’s Concluding Observations on the EU, was published by the Commission in February 2017.

The UK has been a very active participant in the development and implementation of EU disability law and policy. While it has undoubtedly played an important part in strengthening the EU disability rights agenda, EU disability law and policy has also pushed forward and underpinned disability rights protections in the UK.

Chapter 3: Embedding Disability Rights in UK (and Devolved) Law and Policy

3.1 Ensuring Disability Rights are Preserved by the Great Repeal Bill

In October 2016, the Government announced that it would be introducing a ‘Great Repeal Bill’ – an initiative subsequently explained as follows:

“To provide legal certainty over our exit from the EU, we will introduce the Great Repeal Bill to remove the European Communities Act 1972 from the statute book and convert the … body of existing EU law … into domestic law. This means that, wherever practical and appropriate, the same rules and laws will apply on the day after we leave the EU as they did before.”

A White Paper, setting out the proposed content of this Bill, was published on 30 March 2017. A number of issues connected with this Bill have particular relevance to disabled people and others concerned to ensure that equality and human rights remain at least as strong in post-Brexit UK as in pre-Brexit UK. These include the following:

First, it will be important for the disability sector to identify those rights which EU law makes part of UK law even though they do not appear explicitly in UK legislation. Many disability-related rights in EU law will already be embedded in domestic UK legislation, such as the Equality Act 2010. However, disability-related rights are also created by EU laws (such as regulations) which are ‘directly applicable’ in the UK but which do not currently appear on the UK statute books. Important examples in the disability context are the various EU passenger rights regulations which govern matters such as the accessibility of vehicles and assistance for disabled passengers whilst on board. It would be helpful for those concerned with disability rights to have a clear understanding of what disability-related rights or matters fall into this category so that they can ensure disabled people and others are aware of their existence. This is important to ensure that they are preserved by the Great Repeal Bill (without being ‘corrected’ in such a way as to reduce their effectiveness) and to safeguard them against subsequent repeal or abandonment. Efforts should therefore be made to ensure that disability-related rights are comprehensively included in initiatives such as Liberty’s research on human rights and Brexit.

Disability-related rights may be absent from the face of UK legislation for an additional reason –  they might be contained in EU directives which have not been transposed into UK law before the date of our departure from the EU. This might well be the case for rights set out in the Public Websites and Mobile Applications Directive of 2016 and, if it is adopted by the EU before Brexit, the European Accessibility Act. Political advocacy might well be needed to ensure that the Great Repeal Bill transfers into domestic law directives adopted before Brexit – regardless of whether transposition into UK law has occurred by that time.

A second issue concerns EU law (e.g. directives) which has been transposed into UK law in the form of secondary legislation (often referred to as statutory instruments or regulations). Many EU directives are implemented through secondary legislation by virtue of powers conferred on government (to introduce statutory instruments to give effect to EU law) by the European Communities Act 1972. Disability-related examples include the regulations giving effect to the EU procurement directives. Thus, according to regulation 42(8) and (9) of the Public Procurement: Public Contracts Regulations 2015,

“(8) For all procurement which is intended for use by natural persons, whether the general public or staff of the contracting authority, the technical specifications shall, except in duly justified cases, be drawn up so as to take into account accessibility criteria for disabled persons or design for all users.

(9) Where mandatory accessibility requirements are adopted by a legal act of the EU, technical specifications shall, as far as accessibility criteria for disabled persons or design for all users are concerned, be defined by reference thereto.”

Generally, when the statute (or primary legislation) under which secondary legislation has been made is repealed, the secondary legislation is also repealed. However, the White Paper makes it clear that specific provision would be made in the Great Repeal Bill to ensure that secondary legislation drawn up under the European Communities Act 1972 would remain part of UK law despite its repeal of the European Communities Act. While this assurance is welcome, it does not remove all the difficulty. Secondary legislation can be changed or repealed by government much more easily than can primary legislation, for which a higher degree of parliamentary scrutiny is required. Whilst the UK remains in the EU, security (against the repeal of rights-conferring legislation) is provided by the need to comply with EU law – which would prevent the repeal of secondary legislation which includes rights recognised by EU law. However, after Brexit, that underpinning security will no longer exist – meaning that rights protected only in secondary legislation will be more vulnerable to removal or reduction by executive action than if they were set out in primary legislation. There is therefore a case for arguing that important measures contained in secondary legislation drawn up under the European Communities Act should be given the security of a place in primary legislation or that the Great Repeal Bill should require a similar degree of parliamentary scrutiny for any changes to regulations introduced under the European Communities Act 1972.

3.2 Guarding Against Regression

(a) Avoiding or Restricting Henry VIII Clauses in the Great Repeal Bill

What are often known as ‘Henry VIII clauses’ are provisions in statutes which give the government power to amend or repeal primary legislation (ie provisions in statutes or Acts of Parliament) by way of secondary (or delegated) legislation. As the Joint Committee on Human Rights explains:

“Henry VIII clauses take their name from the Statute of Proclamations 1539 which gave King Henry VIII power to legislate by proclamation.”

Such clauses thus allow the government to effect change without going through the parliamentary processes required for amending or repealing primary legislation.

Various witnesses, including the Bingham Centre for the Rule of Law, expressed concern to the Joint Committee on Human Rights that ‘the “enormous task of Brexit law reform” would give rise to a temptation to delegate large swathes of legislative power to the Executive by passing skeletal primary legislation that includes broadly drafted provisions that delegate law making to the Executive, sometimes using Henry VIII clauses. As EU law would no longer apply, the government could then use such clauses to repeal provisions which confer and protect fundamental rights without the need for parliamentary approval. Accordingly, the Joint Committee on Human Rights recommends as follows:

“Assuming that the Repeal Bill safeguards existing rights under EU law, this would not stop a future Parliament from repealing laws that it did not consider desirable. Without the underpinning of EU law, the rights preserved under the Repeal Bill would be subject to amendment. Under the UK constitution, outside the auspices of EU law, there is no way to entrench fundamental rights. However, the Government must resist the temptation to allow laws relating to fundamental rights to be repealed by secondary legislation for reasons of expediency. If rights are to be changed there should be an opportunity for both Houses to seek both to amend and to vote on such changes.”

The White Paper indicates that Henry VIII clauses will indeed be introduced into the Great Repeal Bill. It suggests that their remit will be confined to, “enabl[ing] corrections to be made to the laws that would otherwise no longer operate appropriately once we have left the EU, so that our legal system continues to function correctly outside the EU, and … also enabl[ing] domestic law once we have left the EU to reflect the content of any withdrawal agreement under Article 50”. It also acknowledges the importance of placing limitations on the use of such powers whilst at the same time stressing the need for them to grant the flexibility and scope necessary for correcting EU-derived law so that it works appropriately in a purely domestic context. The balance between these competing needs has not yet been resolved and it is an issue on which political vigilance is clearly important.

(b) Including a Human Rights Non-Regression Clause in the Great Repeal Bill

As the Government has explained, the aim of the Great Repeal Bill would be to transpose all relevant EU law into domestic UK law so that, as far as possible, the legal position would continue relatively unchanged even after EU law ceased to apply. EU law would then no longer prevent the relevant rules being revoked or amended in ways which would fall short of EU law. Thus, in its words, after Brexit,

“Parliament (and, where appropriate, the devolved legislatures) will be able to decide which elements of [EU-derived] law to keep, amend or repeal once we have left the EU”.

One of the key recommendations made by the House of Commons’ Women and Equalities Committee on equality and the Brexit process is that:

“The Government should include a clause in the Great Repeal Bill that explicitly commits to maintaining the current levels of equalities protection when EU law is transposed into UK law.”

A number of possible versions of such a clause are included in the annex to the Women and Equalities Committee report.

3.3 Constitutionalising/Mainstreaming Equality and Human Rights

(a) Giving the UN Convention on the Rights of Persons with Disabilities Greater Status in Domestic Law

The EU is a party to the CRPD. The impact of ratified international treaties is greater in EU law than it is in UK law. In EU law, the treaty acquires a status and influence beneath that of the foundational treaties but above that of secondary law (e.g. regulations and directives). It must therefore be taken into account by the Court of Justice in its interpretation of secondary law and by all EU institutions in the development of law, policy and practice.

The UK, by contrast, adopts the classic ‘dualist’ approach to international law. This means that ratified UN treaties (including the CRPD) have no effect on domestic law except to the extent that it is given effect through UK legislation – although it may be taken into account by courts to help interpret unresolved or ambiguous questions of law. The UK Independent Mechanism (consisting of the Equality and Human Rights Commission, the Scottish Human Rights Commission and the Equality Commission for Northern Ireland and the Northern Ireland Human Rights Commission), in its ‘shadow’ report to the CRPD Committee, has suggested that legislation should be introduced which incorporates the CRPD more directly. According to it:

“UKIM does not consider that UK and devolved governments consistently give CRPD due consideration, and there are currently no domestic mechanisms to hold them to account for failing to do so.

Scotland’s First Minister has welcomed exploration of ‘implementing and incorporating into Scots law some key international human rights treaties’. However, to date no concrete steps have been taken.

The Social Services and Well-being (Wales) Act’s Code of Practice makes reference to the UNCRPD. However, the Welsh Government has not put consideration of UNCRPD onto a statutory footing in the same way as the UNCRC. ”

Introducing an explicit statutory requirement along the lines that public authorities (including government) have due regard to the CRPD would help to embed the CRPD more clearly and consistently in policy-making. It would help to mitigate against any reduction in the weight given to the CRPD caused by Brexit, although it would not be an exact replacement.

(b) Mainstreaming Accessibility Requirements into Public Information and the Spending of Public Funds

In recent years, a range of EU laws have explicitly embedded accessibility into the payment of public funds (as well as in other fields). In relation to the payment of EU funds, there are relevant requirements concerning the use of Structural and Investment Funds by Member States, and funds allocated to ‘external action’. There are also relevant requirements (as mentioned above) in the Public Procurement Directives which apply to the spending of public monies within EU Member States. The proposed European Accessibility Act would give content to these requirements by providing a mechanism for explaining the meaning of ‘accessibility’ as well as setting out regulatory and enforcement mechanisms.

In addition, as discussed above, the new 2016 directive on public websites and mobile apps imposes accessibility requirements on public authorities. So too do directives on audio-visual and media services in the context of broadcasting and communications.

In a post-Brexit UK, there should be mechanisms for ensuring that accessibility is similarly defined and embedded in the use of public funds and public information.


(c) Introducing an Equality-Compatibility Clause

Equality is a general principle of EU law, which is taken into account in the interpretation of EU law (including by the Court of Justice of the European Union) in appropriate cases. When the UK exits the EU, this will no longer be part of our law. As Sandra Fredman observes:

“The UK is unusual in not having a constitutional protection for the right to equality, which many other countries do. In some ways, the EU has performed that function.”

The Women and Equalities Committee has therefore recommended that the UK take steps to give greater weight to equality in law-making processes.

“The Government should give strong consideration to bringing forward an amendment to the Equality Act 2010 to mirror provisions in the Human Rights Act 1998. The purpose of that amendment would be to set out that public authorities must not act in a way that contravenes the Equality Act unless required to do so by another Act of Parliament; that ministers, when presenting any Bill, must make a declaration of compatibility with the Act; that interpretation of legislation by the courts must take account of the Act and be read as far as possible to comply with its provisions; and that, if any legislation is incompatible with the Act, a declaration of incompatibility should be made by the court.”

(d) Adopting a Cross-Government Equality Strategy

The Women and Equalities Committee recommended the establishment of a cross-government equality strategy and a platform for close collaboration with civil society organisations. In its words:

“78. We believe that there is a wealth of expertise on equalities in civil society organisations that could be harnessed to enhance the development of UK equalities policies after exiting the EU. In some places, there are already platforms or structures in place that may need to be built upon. In others, they need to be developed. A joined-up approach across government departments will be important to ensure cohesive working, and with a focus on each equality area.

79. The Government should develop a cross-government equality strategy, in order to ensure engagement across government departments and provide a platform for linking with and drawing on the expertise of civil society organisations.”

(e) Embedding Strong Human Rights Clauses into New Trade Agreements

The EU includes ‘human rights clauses’ in international trade agreements it concludes with non-EU countries. As the Joint Committee on Human Rights explains:

“A standard human rights clause may comprise an ‘essential elements’ clause referring to basic human rights and democracy standards, and a ‘non-execution’ clause that provides for a mechanism for applying ‘appropriate measures’ (such as sanctions) if the other party violates an ‘essential elements’ clause. …

If one of the parties does not comply with this human rights commitment, the trade agreement or parts of it can, as a last resort, be suspended.”

After Brexit, the UK will be negotiating and entering into bilateral international trade agreements and will have the opportunity to include human rights clauses. As the Joint Committee on Human Rights acknowledges, it will be important that such clauses are included and that they do not fall below the standard of those in similar EU trade agreements.

“105. The EU has included human rights clauses in trade agreements for many years. In circumstances where the UK exits the EU, if it has to negotiate and enter into trade agreements with other states, the Government should, at the very least, ensure that the standards included in current agreements are maintained.

106. Any dilution of standards would give rise to a potential imbalance between UK standards and EU standards which would be extremely undesirable. There is, in principle, an argument to be made that if the UK enters into any new agreements, this is an opportunity to raise standards.”

Such clauses should be inclusive of the human rights of disabled people in future agreements negotiated by the UK. This would be consistent with EU policy - considerable efforts having been made in recent years to ensure that disability rights are embedded in all aspects of its external action.

Chapter 4: Funding

4.1 Funding for Disability-Related Schemes/Work

Under the Social Fund element of the EU Structural and Investment Funds, disabled people’s organisations in the UK have had the opportunity to apply for significant amounts of money for projects furthering disability equality and inclusion. According to the Papworth Trust:

“The EU currently provides millions from the European Social Fund to support a range of schemes for disabled people, such as help with work experience, wage subsidies and support for the self-employed. It has provided much needed funds for education and training, community services and independent living. Many of these services and initiatives are provided by NGOs including organisations run by and for disabled people.”

The European Regional Development Funds have also enabled organisations (including local authorities) to apply for significant amounts of EU funding to spend on projects which enhance disability equality and inclusion. The importance of this issue was noted by the Women and Equalities Committee, according to which:

“Witnesses noted the particular importance of the EU Structural Funds to equalities initiatives; some of this funding goes directly to equality projects and some is channelled through state bodies. Concerns have been raised about potential gaps in funding for equalities initiatives once the UK has left the EU.”

Convincing the UK government that equivalent or greater funding opportunities should be made available after Brexit is likely to be a high priority for disabled people and their organisations.

4.2 Disability-Related Research

Various EU funding streams have also been available for disability-related research. As Sussex University explained in its evidence to the Women and Equalities Committee,

“There are likely to be indirect and long term impacts on equality protection in the UK if the research community loses access to EU funding sources, as seems likely. Particularly given that the UK is one of the largest recipients of research funding in the EU. This will have an impact on the evidence base for equality and law in the future.”

That Committee also quotes the following observations by the Minister for Women and Equalities about the UK’s strong research base in equality:

“I am looking to see what we can do to strengthen it further. I would like to see the UK really be a trailblazer in having a strong evidence base around what works, in tackling discrimination, particularly around gender.”

While this recognition is welcome, there is perhaps work to be done in maintaining the profile of disability in this exercise.

4.3 Membership of Particular Bodies or Networks

During the Brexit negotiations, the UK will have the opportunity to offer funding (or other) contributions in order to have continued membership of or involvement in particular bodies. Some of these have particular disability-relevance, including the following:

– European Medicines Agency: There have been suggestions (which should be further investigated) that ongoing membership of this would facilitate speedy and safe access to new treatments.

– Euratom (the European atomic energy community): There have been suggestions (which should be further investigated) that membership of this body facilitates access to medical isotopes for use in radiotherapy.

– Horizon 2020 and European Research Council: These are major sources of EU funding which facilitate collaboration between researchers across Europe and across disciplines. The Women and Equalities Committee has urged that:

“… leaving the EU does not mean that the UK cannot continue to play a part in European networks. This may mean opting into these networks on a pro-rata basis, which may require funding that was previously provided as part of EU membership. The Government should seek to set aside funding for ensuring that UK research and civil society organisations can maintain international links that are vital for ensuring strong equality protection.”

– Equinet: This is a network of EEA equality bodies which is supported by the EU. It should be noted, that on-going membership of the European Network of Human Rights Institutions would be open to the UK equality bodies after Brexit without the need for specific negotiation or additional payment by the UK. Currently the CRPD Working Group of ENHRI is chaired by the UK-based Equality and Human Rights Commission. Additional resource would strengthen the work this group is able to undertake.

Chapter 5: Freedom of Movement of People

5.1 Disability and the Right of EEA Nationals to Permanent Residence in the UK

There are concerns (raised in the interviews carried out in connection with this study and outlined in Chapter 1 above) that disabled people from other countries in the European Economic Area (EEA) who have been living in the UK for five years or more might well experience disability-related disadvantages when it comes to establishing a right to permanent residence in the UK. According to guidance on the Citizen’s Advice website, in order to establish permanent residence:

“Throughout the five years you must have been one of the following:

• a job-seeker

• a worker

• self-employed

• a former worker who has kept your worker status

• a student who is self-sufficient

• self-sufficient and supporting yourself financially

• a family member of a person in one of these groups.”

It seems likely that a disproportionate number of disabled people will struggle to demonstrate that one or more of these conditions applied throughout a five-year residence period. Efforts should be made to highlight this to government and campaign for disabled people who have lived in the UK for many years not to be exposed to any indirect discrimination as regards citizenship and opportunities to continue living in the UK after Brexit.

In addition, family members of a disabled EEA national may struggle to satisfy the relevant permanent residence requirements where, for instance, they have not sought paid work because they have been providing care to their disabled relative. Further, in situations where a disabled EEA national is able to establish the conditions for permanent residence, in part because of informal care provided by a family member, that family member may not necessarily be entitled to continue living in the UK. Only certain categories of family member can be invited to enjoy residence rights and these do not include, for example, parents or carers of a disabled adult.

Similar worries and uncertainties will undoubtedly affect disabled people from the UK who are currently living in other EAA countries. The concerns stem, in part, from conditions laid down in EU law on the residence rights of EAA citizens which appear to operate to the disadvantage of many disabled people – an issue with implications beyond Brexit. For current purposes, however, a key concern is that attention is given to the situation of disabled nationals of other EAA countries living in the UK, and vice versa, in the Brexit negotiations.

5.2 EU Workers

Individual accounts from disabled people (such as those set out in Chapter 1 above) draws attention to the importance to them of being able to employ personal assistants from other EEA countries. The importance of retaining access to this pool of workers after Brexit was recently highlighted by Baroness Jane Campbell and others in the House of Lords. Detailed research capturing the extent to which personal assistants are drawn from EEA countries in the UK would be helpful. Nevertheless, there is already sufficient evidence to demonstrate the need for government to have regard to this issue when considering new immigration rules and future arrangements with EEA countries.

Another pool of EEA workers with particular relevance to disabled people are health and care workers. Again, a series of media reports have highlighted the extent to which the NHS currently relies on nurses, doctors, care staff and others from EEA countries. This group, too, is one to which the government should have particular regard when elaborating new immigration rules and future arrangements with EEA countries.

5.3 Mutual Recognition Schemes

There are a number of specific schemes, based on mutual recognition, which confer entitlements that people from one EEA country can use in another. Some of these have particular relevance to disabled people and might be issues which the disability sector might wish to draw to the attention of those involved in negotiating Brexit. Examples include the following:

– The EU parking badge scheme, which recognises preferential terms for the use of certain parking facilities by disabled people in all EU countries.

– The EU Disability Card Scheme (which is currently being piloted). This would provide a mechanism by which disabled people from one country could demonstrate this in other countries and thereby access disability-related discounts or privileges available in that country (e.g. reduced fares or ticket prices).

– The European Health Insurance Card scheme (E111), which provides access to free or reduced cost medical treatment during stays in other EU (or EEA) countries and Switzerland

– Cross-border healthcare arrangements, which entitle people from one country to access treatment in other countries in certain circumstances. Whilst UK residents have benefited from this, arguing for its continuation post-Brexit is likely to prove contentious because of its implications for people from other countries having access to the NHS. Questions might arise, however, about whether particular arrangements could be negotiated with Ireland in light of the land border between the UK and Ireland.

5.4 Transport

Finally, mention should again be made of EU passenger rights regulations on travel by air, ship, rail and coach. These include requirements relating to assistance and non-discrimination, as well as technical design and accessibility. Their effectiveness depends on reciprocity and consistency. The extent to which their smooth continuance for UK travellers is put at risk by Brexit is unclear. Explicit attention should be given to this issue in the negotiations to ensure that disabled passengers continue to be able to travel safely and on an equal basis with others.

Chapter 6. Conclusion and Strategies for Influence

The discussion above has identified disabled people’s priorities, mapped out some of the disability-related questions raised by Brexit and suggested a number of potential initiatives and campaigns. Below, we outline a short ‘Manifesto’ based on our engagement with disabled people and DPOs. We also suggest below some potential routes to influencing based on the Manifesto. Some of these will be more urgent and time-sensitive than others and no attempt to draw up a timeline has been made at this stage.

We have engaged disabled people and DPOs on-line, through events and interviews and secured sign-up to our Manifesto from a range of prominent DPOs and disability charities. Following this report there is further work to do to reach larger numbers of disabled people, and disability organisations, to raise further awareness with them of the implications of Brexit for disability rights and to engage them in future work. Furthermore, many of the issues mentioned here will be of concern to organisations and individuals working in issues other than disability – and these organisations are often important allies. We have talked with organisations including the Equality and Diversity Forum, the Equality and Human Rights Commission and the Office for Disability Issues in Government, in order to plan strategies for influence that complement and add value to their work in this area. We have raised with the Minister for Disabled People Penny Mordaunt the key issues we have identified and asked her to ensure these issues are factored in to Government negotiations and plans on Brexit; she responded positively. We also raised the issue with the Disability Charities Consortium (the eight large disability charities), who shared with each other a list of key issues that included our identified concerns, so that the whole disability sector draws on similar points in its influencing work with Government.

It should also be stressed there will almost certainly be disability-related Brexit issues which are not addressed here. The engagement strategy adopted by the sector will need to have in-built flexibility to recognise, integrate and respond to newly emerging concerns and opportunities.

With these provisos in mind, we present the following Manifesto for disability rights in a post-EU UK. At the time of first submitting this report, Disability Rights UK and its membership had secured broad agreement to these demands and subsequent recommendations from the following organisations within the disability sector:

Action on Disability


Community Navigator Services

Disability Action Northern Ireland

Disability Wales

Disire (new EU citizens’ DPO)

Leicestershire Centre for Integrated Living

Leonard Cheshire

Lives Unlimited

National Survivor User Network


Shaping Our Lives


Spinal Injuries Association

York Independent Living Network

We subsequently received additional support for the Manifesto from other key DPOs including Breakthrough UK, Inclusion Scotland, Independent Lives and Real.

We have shared our top priorities with various alliances and groupings of disability organisations seeking to influence policy, including groups convened by our Ambassador Lord Colin Low (disability fight back group) and Baroness Jane Campbell (independent living strategy group) and the Reclaiming our Futures Alliance.

We have used our Manifesto to make links with expert advice and calls from other social justice organisations. We have shared our agenda with other groups and networks pressing for a fair Brexit, including the EHRC, the Equality and Diversity Forum and TUC and we have agreed to reinforce each other’s messages wherever we agree. Our conclusions correlate strongly with both the EFD’s position and the EHRC’s 5-point plan ‘Healing the divisions: a positive vision for equality and human rights in Britain’ www.equalityhumanrights.com/en/publication-download/healing-divisions-positive-vision-equality-and-human-rights-britain.

Our Manifesto for disability rights in a post-EU UK

All EU-based disability rights existing at the time the UK leaves the EU to be maintained, including those in relation to air and ship travel, web accessibility, accessible goods and services, public procurement and manufactured goods

Maintenance of existing disability rights which are incorporated in domestic law at the time of exit, including primary legislation remaining unchanged unless there has been detailed parliamentary scrutiny (i.e. no Henry VIII clauses which would permit change without scrutiny); and secondary legislation to be left in place with no watering down and no inadvertent discarding of, for example, disability equality rules and regulations as ‘red tape’

Continued Government commitment to the UK being ahead of the curve on disability rights – fully committing to implementing standards equivalent to the new European Accessibility Act once passed, building human rights clauses into future trade agreements and at least matching future progressive developments in EU disability rights law

At least matching current EU funding in real terms of DPOs and disability rights – this includes matching by the UK government of all EU funding that supports a) disabled people’s voice and participation, including employment support b) independent living

c) other UN Convention rights and d) research on issues of importance to disabled people - with particular attention given to parts of the UK where loss of EU funding will damage the DPO sector

A full equality impact assessment by Government of plans for freedom of movement, before those plans are agreed, ensuring no disproportionate impact on a) disabled EU citizens living in the UK b) carers c) disabled British citizens living in other EU countries and d) no detrimental impact on disabled people’s independence through reducing the PA workforce - this must involve detailed parliamentary scrutiny and public consultation on plans for EU citizens in the UK in terms of rules about ‘self-sufficiency’ and requirements for ‘comprehensive health insurance’

Continued mutual recognition initiatives useful to disabled people - for instance badges to enable disabled people to park and cards offering other access and benefits

Giving the UNCRPD heightened status in domestic UK law - increasing the influence and impact of the UNCRPD on tackling discrimination and advancing equality

Continued commitment to the European Convention on Human Rights

We have also drawn up the following suggestions for effective future influencing on public debate and policy in relation to disability rights and Brexit and recommendations on what the disability sector most needs at this time:

1. Create and promote a ‘narrative’ that frames our demands in ways that resonate with the public, disabled people and policy makers, by:

Drawing on the work of Equally Ours (part of the Equality and Diversity Forum) who have built an evidence base on how to frame human rights issues such that they are ‘heard’ as vital everyday concerns

Echoing the EHRC call for a ‘fair Brexit’

Encouraging all disability organisations to promote the narrative through all their networks

Working with interested journalists to promote our narrative with wider audiences

Building this narrative and these demands into the regular work of DPOs and disability organisations – so that our key demands on Brexit become part of campaigning platforms more broadly

2. Identify the most important people and bodies to influence, to include:

Decision-makers and those that influence them: Secretary of State for Exiting the EU, Department for Exiting the EU, Senior Cabinet Ministers, Minister for Disabled People, civil service leads on Brexit and a) disability and b) equality

Parliamentarians of all parties and parliamentary Committees with the potential to influence, including the All-party Parliamentary Group on Disability who can champion the issues; and in particular the Select Committee on exiting the EU, chaired by Hilary Benn MP, the Select Committee on Women and Equalities chaired by Maria Miller MP, and (on workforce issues) the Select Committee on Work and Pensions (chaired by Frank Field MP) and the Select Committee on Health (chaired by Dr Sarah Wollaston MP). Hilary Patrick also identifies Committees that may have an interest in changes to domestic law: the House of Lords Delegated Powers Committee, the House of Lords Committee on the Constitution, the Joint Committee on Human Rights and – if reforms are introduced by delegated legislation – the Joint Committee on Statutory Instruments and the House of Lords Merit Committee  

3. Consider who is best placed to influence, for instance:

People and organisations who are already influencing those decision-makers and may be willing to add our Agenda to their messages

Disabled people and allies with links to decision-makers: for instance, the Disability Charities Commission has regular meetings with Ministers, and Jonathan Kay (referenced above) has briefed the Secretary of State for exiting the EU. Also, EU-level organisations of disabled people which are likely to have access to negotiators in the Brexit process (in particular the European Disability Forum).

Direct voices of disabled people to convey the significance of the issues to real people’s lives

Champions in Parliament, for instance disabled peers like Baroness Campbell and Lord Low, already raising disability implications of Brexit in the Lords

Relevant think tanks and academics who may be influential

Organisations that may ‘carry’ some of our message, e.g. trade unions, EHRC

Bodies that may have leverage: for instance, might the EU consider requiring the UK to comply with high standards of accessibility, and disability employment, in order to trade with them? And could the European Disability Forum and MEPs help secure such a commitment?

4. Ensure continued, unified, focused campaigning to press Government to act on major human rights issues in order to stop Government from neglecting other major priorities because of the overwhelming emphasis on Brexit

5. Ensure regular cross-sectoral review and refinement of the strategy:

Establish a steering group made up of DPOs and disability charities, including EU-level DPOs such as the European Disability Forum and the European Network for Independent Living.

Track actions and outputs

Review achievements and adjust plans as needed

Ensure regular communications bulletins, that can go out from the widest range of disability organisations to their members and networks to sustain momentum – and where needed stimulate action (for instance, encouraging disabled people to visit their MPs locally to lobby for this agenda)

6. Compile a comprehensive list of all the mutual recognition initiatives that we want to be maintained and fill in any remaining research gaps, so it is clear for example what the current level of EU funding support is for DPOs and disability rights.

7. In the likely event of some former EU legislation being moved across to the devolved nations, specific support for DPOs in the devolved nations in their role of protecting disabled people’s rights.

8. Use opportunities for the disability sector to draw upon the UNCRPD to reassert and safeguard the freedom, purpose and action of voluntary sector disability organisations.


Achieving this will require support. The disability sector is very stretched, often subject to funding cuts or constraints; yet trying to address a wide agenda including the impact of social care and benefit funding restrictions, transport, employment and more. It would be extremely helpful if LEF or other committed funders were to consider creating a fund that could be used for collaborative, co-ordinated projects to:

a) engage grassroots DPOs – and disabled people – in knowing the disability rights implications of Brexit, being able to share experiences and stories, and to have a voice in the debate on Brexit – including talking with MPs, MEPs and other influencers at local, regional and national level

b) co-ordinate national UK level influencing: setting up a Steering Group, sustaining strong liaison across the disability sector and with ally equalities organisations, overseeing the development and testing of narrative development and co-ordinated use of messages, finalising the ‘manifesto’ and implementing an influencing strategy, based on a project plan detailing who needs to be influenced, how and who is best placed to do so.

It would be vital that the resource is used for co-ordinated activity. Several disjointed national activities, for instance, would risk diluting impact.

Bringing the sector together to influence effectively on this agenda could be a game changer in terms of increasing knowledge and confidence in promoting legal rights amongst disabled people and our organisations; and in terms of changing the terms of the debate on Brexit and the decisions that flow from that debate.

Understanding the Care Act: Key rights and Top Tips


This presentation gives an overview of the Care Act 2014.   It describes how adult social care system in England should work according to the law, the duties local authorities have, how they should assess your needs, develop your support plan, decide how much support they will provide and how it will be provided.  This presentation also gives tips on how to get the most out of this process and maximise your chances of getting support.

In your twenties but unable to have a social life: What it's like being disabled in modern Britain

‘I want to be a 28-year-old living like a 28-year-old, but I’m treated like a child. This is my cry for help,’ Lakhvinder Kaur tells The Independent

It’s Saturday evening. Lakhvinder Kaur is in her room eating dinner alone. She can hear the noise of elderly residents shouting in the dining room as staff try to calm them down. Her friends are going to a gig tonight, but as usual she can’t join them. She is 28, but her social life is practically non-existent.

Ms Kaur has spinal muscular atrophy, meaning she uses a wheelchair and needs round-the-clock support. Since an argument with her parents at the age of 21, she has lived in residential facilities. Most recently, she was moved to Sahara Care in Barking, where she is the second youngest resident, living among mainly elderly people with severe learning disabilities.

A receptionist in a hotel, Ms Kaur is proud of holding a job despite her disability and not receiving benefits. But her care package has been reduced in recent years, meaning she’s less able to get out and do things. Her care home sets a curfew for midnight, meaning she isn’t able to have friends round when she finishes work at 11pm.

“Nearly everyone else in this home is three or four times my age. There is one 26-year-old but she has severe learning difficulties. Most of them have challenging behaviour. I do speak to them. There’s an old lady who is lovely so I colour with her. I try to have conversations with people, even though they’re not always mentally there.

“But there’s a lot of noise at dinner. I need to be comfortable where I am. I don’t want food flying around or somebody trying to grab my food, so I eat in my room alone.”

Ms Kaur currently receives just three-and-a-half hours of support a day, and another one-and-a-half hours at night. This means she only has enough support while at work for care home staff to take her there, support her to use the toilet just once, and then bring her home again at the end of her shift.

In June, she was effectively evicted from Sahara Care after making a number of complaints about the strict requirements and a lack of support. The home has reportedly raised objections to her organising birthday parties and occasionally inviting friends over for late-night drinks, as well as objecting to the 28-year-old’s demands that she be supported by female staff who are properly trained to assist with her personal care needs.

On her birthday this year, Ms Kaur said she informed staff that she was organising a gathering, which they agreed was OK. “It was going to be a barbecue, but because it was so cold, they decided to do it inside my flat. We got food, we got some drinks, some quiet music,” she said.

“There were about 20 people, but it was all contained in my flat. The staff didn’t need to assist with anything. One of my friends who I work with works as a chef and didn’t finish until 11:30. He came in just to say hello to me and have a quick drink, but a senior staff came in and said my party was supposed to finish at 9pm. He had to leave.

“I want to be a 28-year-old living like a 28-year-old, having the right care, but I’m treated like a child.”

Despite being told she has been evicted, Ms Kaur is refusing to leave the home, saying it will only see her sent to another residential home with even less of the facilities she requires to meet her physical needs.

“I’m just fighting. The local authority say there’s nothing they can do, but they’ve taken away one of the big factors in my life – the care package which allows me to have a shower the way I want to have a shower, go to the toilet when I need to go to the toilet. It’s dehumanising. Don’t all lives matter?” she said.

“This package covers human rights only. I feel isolated, depressed. I’ve gone through periods of feeling suicidal. What’s the point in being alive when I only have this?”

Faced with being moved to a different care home, Ms Kaur has raised the issue that it would place her far from her workplace. But she said that in response, she was told by staff in the care home and social service officers that she should “sort out her priorities” and that “work is not important right now” – a claim she rejected with vehemence.

“I’ve had my job for four years. I’m on a zero-hours contract but I’ve held it down for four years. My employer has always been very supportive. I can’t let my job go. It’s everything to me; it’s my independence. It makes me who I am. I earn my own money. I’m not on benefits. I’m trying to be independent,” she said.

“So then being told that I need to think about quitting my job really hurts. They want me to quit my job so they can put me anywhere.”

Ms Kaur said she was also told by a social worker that instead of receiving the support she needs to use the toilet, she should use incontinence pads or have a catheter fitted, even though she does not have a problem with incontinence.

“I was told by a duty social worker that I only needed to drink one glass of water a day, to avoid needing to go to the loo without support,“ she said. “They said you can catheter yourself, or you can wear a nappy. At that point I broke down. My mum didn’t train me to go to the toilet for nothing.”

Ms Kaur’s situation has come to light after it emerged that disabled people in the UK face being “interned” in care homes due to NHS new cost-cutting measures, in what amounts to a potential breach of their human rights.

The Equality and Human Rights Commission (EHRC) warned that caps to funding for NHS care outside hospital means disabled people may be prevented from living at home despite being well enough to do so, as they fail to take into account a person’s specific circumstances.

Separately, the Government was recently accused of “evading” disability rights by ignoring the recommendations of a major UN committee, in what has been described as a “continuing retrogression” of disabled people’s rights in the UK. The United Nations accused ministers of failing to uphold the rights of disabled people through austerity policies.

In a complaint Ms Kaur has lodged with Newham council, she wrote: “As an Asian disabled woman, being forced to live in a care home or supported living dehumanises me and disconnects me from my community and the everyday life of society, and hinders any aspirations and life chance opportunities I may have. This is my cry for help – I refuse to move from one care home to another care home.”

A Newham council spokeswoman said they had been working closely with Ms Kaur to ensure the care and support she receives meets her needs, saying in a statement: “She has an allocated social worker who has been supporting her to review all her options.

“We know she wants to live independently and this is something we are actively exploring. She has highly complex care needs and finding a solution to enable her to live independently in the community is not easy.

The spokesperson added that the council was in the process of investigating whether direct payments could assist with this and said they would update Ms Kaur once they had completed all their assessments, adding: “The current accommodation we have found for her is an interim measure until there is a long-term plan in place.

“A full assessment has been completed on the interim accommodation sourced for her and was found by the provider to be suitable for her needs. We will carry out an additional review of this accommodation.”

When approached by The Independent, Sahara Care declined to comment.

Your rights to social care support

Inclusion London has worked with solicitors and specialists such as Professor Luke Clements to put together resources to help Disabled people and DDPOs understand how the system should work and what the law says.

Posted: 26 May 2017

We know many Disabled people find it extremely difficult to get appropriate levels of social care support, which means we are not able to live independently.  The problem is especially acute for former ILF recipients. We believe in these difficult times it is important for all of us to know our rights and understand how the system should work according to the law, so we can stand up for our rights and challenge unlawful decisions.

Inclusion London is keen to hear Disabled people’s experiences of accessing social care support. Personal stories can be a powerful way of influencing politicians and getting media attention for an issue. If you have an experience you are happy to share please email ellen.clifford@inclusionlondon.org.uk.  You can request anonymity for yourself for if we use your story including if you do not want any information used by which your Council can be identified.

We know that Universal credit is a mess, but what about HMRC Real Time Information system?

We know that Universal credit is a mess, but what about HMRC’s Real Time Information system? The following contribution from Stephen Timms based on a Freedom of Information request is very interesting. It seems that over 5% of payments to individuals by HMRC were reported being paid late.  HMRC does not monitor the missing or incorrect payments, but we know that Universal Credit is being underpaid. So not only claimants have to contend with long waiting times, but when they are paid via RTI, over 5% are paid late, and an unknown number of claimants don’t receive anything, or an incorrect payment, mostly at their disadvantage. What experts are saying, is that 5,7% is an unacceptably high rate of late payments.  The number of late, missing and incorrect payments should be well lower than 1% if UC is going to work

Stephen Timms’ contribution comes from yesterdays debate on UC

Frances Ryan wants to speak to disabled people threatened to be moved to residential settings

It’s been reported http://www.independent.co.uk/news/uk/home-news/disabled-people-interned-care-homes-nhs-cost-cutting-a8019906.html that across the country disabled people are receiving threats from their local NHS service that they may have to be moved from living in their own homes to a residential setting due to newly capped funding.


I’m looking to speak to disabled people in this situation to raise awareness of the issue. Please note, it isn’t necessary that you’ve actually been moved to a care home but that you’ve been directly told this is a possibility. 


Please get in touch on: frances.ryan.freelance@guardian.co.uk 

Qualifying for Blue Badge with Personal Independence Payment (PIP)

13th October 2017

The eligibility criteria for a parking permit from the Blue Badge scheme has changed in line with recent changes to mobility allowances in the UK; Independent mobility consultant Helen Dolphin MBE explains all:

In the past, meeting the requirements to join the Motability Scheme and automatically qualifying for a Blue Badge went hand in hand. This was because to be eligible to join the Motability Scheme, for most customers, you needed to be in receipt of the Higher Rate Mobility Component of Disability Living Allowance (HRMC DLA) and if you received this benefit you were automatically entitled to qualify for a Blue Badge. This meant that every Motability Scheme customer could have a Blue Badge if they chose to apply.

However, this changed in 2013 when the government began moving people from DLA to the new Personal Independence Payment (PIP). The assessment for the mobility component of PIP measures people on two criteria. One tests their ability in “moving around”, and the other measures their understanding of “planning and following a journey”. In order to get an award of the mobility component of PIP you need to score 8 points for the standard rate and 12 points for the enhanced rate. To qualify for the Motability Scheme, you would need to be in receipt of PIP enhanced rate mobility. However, Blue Badge qualification is no longer purely on qualifying for the Enhanced Rate Mobility Component of PIP and is also different depending on where you live.

Currently you can qualify for a Blue Badge automatically if you live in England or Northern Ireland and have been awarded 8 points or more in the ‘moving around’ activity of Personal Independence Payment (PIP). This means that those who qualify for the PIP enhanced mobility rate because they have problems ‘planning and following a journey’, are not automatically entitled to a Blue Badge. Because of this change disabled people who may have had a Blue Badge for many years now no longer qualify automatically because they have moved from DLA to PIP. It also means that some Motability Scheme customers will now not have a Blue Badge. However, if you don’t qualify for PIP following reassessment you will be able to continue using your Blue Badge until it expires and then you can apply directly to your local authority.

The rules are also different if you in live in Scotland or Wales. Here you can automatically qualify for a Blue Badge if you have been awarded 8 points or more in the ‘moving around’ activity or 12 points in the ‘planning and following a journey’ activity of PIP.

However, if you lose your DLA in a PIP reassessment it does not mean categorically that you will not be able to qualify for a Blue Badge. It just means you will no longer qualify automatically and so you will need to need to apply through the assessed route. You may qualify for a Blue Badge by being assessed by your local authority if you are aged two or over and one of the following applies:

 • You have a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking;

 • You drive regularly, have a severe disability in both arms and are unable to operate, or have severe difficulty operating, all or some types of parking metre;

 • You live in Scotland or Wales and you are unable to walk or virtually unable to walk because of a temporary but substantial disability which is likely to last for at least 12 months but less than three years;

 • You live in Scotland, have a mental disorder (within the meaning of section 328 of the Mental Health (care & treatment) (Scotland) Act 2003) and you are considered to lack awareness of danger from traffic which is likely to compromise your safety or that or others during journeys. You must be getting one of the following – Middle or Highest Rate Care Component of DLA, Attendance Allowance or PIP (having been assessed as having limited/severely limited ability to carry out daily living activities).

For the current Blue badge qualification criteria visit the gov.uk website

Changes to Blue Badge Entitlement following the implementation of PIP – a victory

courtesy DPAC

As some of you will know there were changes in Blue Badge entitlement as a result of the introduction of PIP which meant that anyone who could walk regardless of other impairments such as Autism, MH or visual impairment were no longer able to qualify for a Blue Badge.

This change affected one of our supporters whose son had previously been entitled to a Blue Badge for around 30 years and the Local Authority involved refused to renew their badge when it ran out earlier this year. The result of that has been that the person became virtually housebound as he frequently had meltdowns and his PAs needed to be able to get him into the car quickly.

We referred this person to one of the solicitors we often work with Louise Whitfield of Deighton Pierce Glynn and we are delighted to report a very successful outcome.

Not only have the Local Authority backed down and renewed the Blue Badge but even without the case having to go to court The Department for Transport have agreed to carry out a review of the entire Blue Badge policy and its approach towards people with “non-physical disabilities.

The DfT have said: “I can confirm that the review process has now begun internally. The Department’s Blue Badge policy team is undertaking the review. They intend to involve the Department for Work & Pensions, Department for Health, lawyers, local authorities, DPTAC, disability organisations and mental health experts.  

They will look at how the scheme works for people with non-physical disabilities, with a view to ensuring that equalities issues are addressed and that the scheme continues to be sustainable for disabled people. Following the initial work, a public consultation is likely. Local authorities are also likely to need fresh guidance. It is not possible to give timescales at this stage but further information on the review will be provided in due course.”


Theresa May scraps universal credit helpline charges

People will be able to call the government's universal credit helpline without being charged, within weeks.

Prime Minister Theresa May said she had listened to criticism of the charges, which can be up to 55p a minute, and decided it was "right" to drop them.

But she again rejected calls by Labour leader Jeremy Corbyn to "pause" the roll-out of the controversial benefit.

At Prime Minister's Questions, Mr Corbyn said he was glad the PM had "bowed to Labour pressure" on charges.

But he added: "The fundamental problems of universal credit remain - the six week wait, rising indebtedness, rent arrears and evictions.

"Will the prime minister now pause universal credit and fix the problems before pressing ahead with the roll-out?”

Mrs May prompted cheers from Labour MPs as she began her reply with "yes", before urging them to "listen to the whole sentence I was going to make”.

She said universal credit was "a simpler system", that "encourages people to get into the workplace - it is a system that is working because more people are getting into work”.

The exchanges came as Labour sought to highlight concerns among Conservative MPs over the roll-out in a Commons debate.

The universal credit hotline will become free to use "over the next month", the government has said, and that would be followed by all DWP helplines by the end of the year. The government says it makes no money from the 0345 number.

Universal credit, which rolls six working-age benefits into a single payment, is designed to make the system simpler and ensure no-one faces a situation where they would be better off claiming benefits than working. Universal credit has been introduced in stages to different groups of claimants over the past four years, with about 610,000 people now receiving it.

Much of the criticism of the scheme has focused on the six-week delay to payments, which are made in arrears.

Almost a quarter of all claimants have had to wait more than six weeks to receive their first payment in full because of errors and problems evidencing claims.

BBC Newsnight's political editor Nick Watt said he understood ministers were also giving "serious thought" to cutting the initial waiting period for payments from six to four weeks around the time of next month's Budget.

Councils’ use of prepayment cards risks contravening Care Act, study claims

Freedom of Information requests reveal 'restrictive and intrusive' use of cards given to service users to manage personal budgets

by Alex Turner on October 13, 2017 in Adults Community Care

A third of councils prohibited service users from directly withdrawing cash.

The use of prepayment cards by councils as a tool to manage personal social care budgets is constraining service users’ right to exercise choice and control, a study has claimed.

The research, carried out via Freedom of Information (FOI) requests by the Independent Living Strategy Group (ILSG), a network of disability organisations and their allies, found almost half of local authorities in England used the cards. Instead of making direct payments into service users’ bank accounts, councils load up the cards with funds, are able to monitor them – at an individual transaction level – and in many cases choose to restrict their use.

Across the 69 areas using them, 15% of all personal budgets – nearly 33,000 in total – were managed via prepayment cards, the study found, with three councils using them for all or nearly all of their personal budgets. Contravening statutory guidance, some councils were allocating cards as a default mechanism, rather than offering other options such as direct payments.


While nearly all councils using prepayment cards said they considered them direct payments, roughly a third prohibited service users from directly withdrawing cash, as they would be able to with a regular bank account. A similar proportion said they allowed cash withdrawals, while the remaining third permitted withdrawals in certain circumstances.

The vast majority of authorities placed some other kind of restriction on how funds were spent, though the research found considerable geographical variance, creating a postcode lottery.

“Most common was a stipulation that the funds must be used as described in the individual care and support plan and to meet assessed eligible needs,” the report said.

Councils frequently imposed blanket bans – including blocking cards at certain establishments – around things such as food, alcohol, and dating and escort services. They also flagged up their ability to monitor spend and suspend cards if they were unhappy with transactions.


Under the Care Act 2014, all people receiving long-term care and support are required to have control of their personal budget – including having agency over how funds are held and used to meet their desired outcomes.

The statutory guidance on the Care Act says prepaid cards “can be a good option for some people using direct payments, but must not be used to constrain choice or be only available for use with a restricted list of providers”.

It adds: “It is also important that where a pre-paid card system is used, the person is still free to exercise choice and control. For example, there should not be blanket restrictions on cash withdrawals from pre-paid cards which could limit choice and control.”

‘No going backwards’

John Waters, a researcher from the charity In Control, who wrote up the ILSG research, said that the study was a warning that there must be no “going backwards” around choice and control.

“As an emerging innovation payment cards present councils with tremendous opportunities – they could if used well help make the aspiration of greater choice and control embedded in the Care Act a reality for people in their day to day lives,” he said.

“The report shows that current use of the technology is focused on increasing monitoring and imposing controls on people’s lives, perverting a potentially empowering technology,” Waters added. “The cards are too often being forced on people in a ways that undermine their rights and dignity.”

‘Cumbersome and difficult’

The ILSG carried out its research after one of its members – Clare Gray, a disability advocacy advisor with Shaw Trust – raised concerns about her personal experience of prepayment cards and how her direct payment was being managed.

Gray told Community Care that her local authority had switched her to a prepayment card with little warning, after 20 years of problem-free direct payments into her bank account. She endured two years on the “cumbersome and difficult” system, including an unsuccessful appeal to the Local Government Ombudsman, before her payments were reinstated.

“The system wasn’t very accessible, I was always having to put in my password and couldn’t view payments easily and I have limited movement, so it’s hard for me to use a mouse and keyboard,” Gray said. She added that the prepayment card made paying her care staff much less convenient.

Council spending on cards

All 152 local authorities with social care responsibilities responded to the ILSG’s FOI requests, with 69 saying they used the cards and many others considering them.

The report estimated that the councils using the cards spent £1.5m on introducing them, and a similar amount per year on associated costs and fees.

“In contrast to the scrutiny on spending expected of disabled people, our research highlighted that many local authorities were not in a position to say how much the schemes had cost them to introduce or to run,” the report said. “It is therefore not clear that the additional cost of operating such systems can be justified.”

There was little evidence of growing public demand for the cards, or benefit to their end users, the report claimed. “Their attraction seems to lie in the ability they give to local authorities wishing to monitor spending,” the report said, adding that their introduction “potentially represents a gross invasion of privacy”.

It concluded that prepayment cards’ use needed to be “characterised by partnership and trust”, and said that misappropriation of funds was “exceptionally rare”.

‘Good test’ for councils

In a series of recommendations, the ILSG advised councils to offer payment cards only as one of a number of options, to avoid blanket restrictions on their use and, when considering individual restrictions, to evaluate whether they represent a deprivation of liberty. It also called for “open and transparent” policies around monitoring accounts, recommending that access be restricted to single named individuals.

Margaret Willcox, the president of the Association of Directors of Adult Social Services (ADASS), which the ILSG told Community Care had engaged positively around the report recommendations, said she was “grateful” that prepayment card practice had been investigated.

“Managing the balance between our duty to protect the people we serve and resources we manage alongside the maximising of choice and control is ever challenging, but the report recommendations provide a good test for us,” she said.

Clenton Farquharson, the chair of Think Local Act Personal, the leadership organisation for personalisation, said he welcomed the report’s highlighting of an issue that was “often” brought to his attention.

“We will be delighted to work with ILSG and ADASS and support the sector by developing practical advice and materials which councils and their partners can use to improve practice,” he said.

Waters said: “It is helpful that the recommendations in the report are being welcomed, as they provide a template for implementation that if adhered to will see payment cards implemented in positive ways.”

DPAC’s work to give disabled people a voice recognised

courtesy DPAC 10th October 2017

Liberty’s Human Rights AwardsL ominated by the public.

Comedian Jeremy Hardy will host this year’s event on 24 October at London’s Royal Court Theatre – and will introduce a new Courageous Voice award, honouring those who have taking bold action to stand up to those in power.

The 2017 nominees are:

Courageous Voice

• Disabled People Against Cuts – for their Summer of Discontent week of action, raising awareness of issues affecting the rights of disabled people.

• Callum Tulley – for his undercover work with Panorama, which exposed chaos, violence and abuse at Brook House immigration removal centre.

• Open Whisper Systems – for their pioneering end-to-end encryption technology that keeps over one billion people’s communications private via Signal and WhatsApp.

Dear Personal Assistant

Courtesy The Squeaky Wheelchair - Kathleen

I like my shoelaces pulled tight and my hair parted to the side. If you’re putting on my jacket, it is best to start with my left hand, which in all its gnarled glory possesses a certain omnipresence in photos like that relative who creeps in the background every time there’s a camera around. Buckle my feet in tightly or I will unintentionally kick you. These are some of the things I would tell you if you were assisting me. These are some of the ways that my disability colours every aspect of my life. I was born with it, it has shaped my being, and I would not trade it for the world. This is me and I have faith in my design. However, that does not mean it always feels fair or easy to need help with so many things.

To those who can care for themselves, it is natural to take these things for granted. I do not expect you to understand fully what it feels like to live with a disability. But I’m asking you to listen, so perhaps we can better see through one another’s eyes. There are days when I feel like my life is a shift. The constant devotion of my old pal palsy has forced me to become a psychic; my carefully planned schedule means I can probably tell you when I’m taking a shower, not just tonight, but for the next three weeks. At least once a day I have a skit like moment when I think, “What do you mean, plans at 2:00? Everyone knows that I pee at 2:00!” As much as I love having an intimate affair with my pager, it can be an incredibly vulnerable feeling to know that the pager is my only connection to a set of hands to pull me out of bed. What I am getting at, I suppose, is that you have accepted an incredibly responsible job. I thank you from the bottom of my heart for taking it, but this being said, remember that your presence, and your absence, for the matter, affect my whole world.

This job may be more tiring, more challenging, more physically and emotionally demanding than any other job you will ever take. Sometimes it will mean putting off plans. But I ask you to be gentle with me, and to realise that I too have many things to juggle. Sometimes while I juggle, I look upward toward a higher being and think, “Juggling?! Seriously? You only gave me one hand that works!” Coordinating my care in addition to the regular tasks of life is exhausting, and I know that taking care of me is no cake job.

But I can laugh at almost anything, I love to sing in the shower, and I tell good stories. I do my best to give you something in return for your time and I hope that this can be a situation of interdependence rather than just one about “helping” me. It does not always feel fair or easy to need help with so many things, but when you assist me with patience, humour, and commitment, it fills me with peace and makes juggling seem possible. 

My favourite colour is purple. I love the smell of rain. The things that I can do on my own; those moments when I’m rolling solo on a sunny morning are intensely freeing and beautiful. I am someone’s child, someone’s sister, someone’s best friend. I am human. These are some of the things I would tell you if you wanted to see my person and not just my “needs”. Since you’re going to be tying the laces each morning, every so often I ask that you put yourself in my shoes.

Deidre Brock: Society must stop disabling people

Deidre Brock is SNP MP for Edinburgh North and Leith

Courtesy of Monday 9 October 2017 Edinburgh News

With all the political drama going on these days, it’s hard to discuss a UN convention without eyes glazing over, but bear with me. This is a scandal that may not grab headlines like the PM’s unfortunate cough and P45 handover last week, but it deserves to be in every paper and on every politician’s to-do list. The UN Convention on the Rights of Persons with Disabilities was signed a decade ago. At its heart this is about treating people with a disability the same as everyone else – as active citizens able to enjoy the same rights, freedoms and choices that we all expect. Where adjustments can be made so that society doesn’t disable people, we make them. Seems straightforward enough for a rich society like ours. Yet a recent UN inquiry found welfare reforms have led to “grave and systematic” violations of these rights.

This won’t be a surprise to anyone with experience of the system, but it is no less shocking for it. The brutal cuts which take away people’s mobility cars or their support to live independently, the increased poverty from policies of austerity have disproportionately affected disabled people. There are now genuine fears that Brexit will make the downward slide even worse as essential health and social care staff from EU countries leave the UK in their droves. EU level funds and anti-discrimination laws are also under threat. It doesn’t have to be this way. The UN laid out steps the UK could take to make things better. Disabled individuals and organisations have gathered evidence, lobbied, marched and yelled from the rooftops for change – but instead of rolling up their sleeves and getting on with it, it seems the UK Government has stuck its fingers in its ears.

Improving the quality of life for people with disabilities is about social opportunities too, things like being able to go out and enjoy a pint with pals without fear there’s no toilet – something non-disabled people take for granted. I’m pleased to say many of Edinburgh citizens have been leading the way in tackling this issue. This includes disability campaigner Mark Cooper who was inspired to start the “Barred” campaign to change licensing laws which should come into effect in Scotland soon. There’s also Euan MacDonald who took this on by launching the website Euan’s Guide – a growing global resource with reviews of accessible facilities written for and by disabled people who know what they’re talking about. Euan takes a positive approach which awards good practice and hopefully improves business for those that have made the effort, encouraging others to do the same. I’ve called a debate on the UN Convention on the rights of people with disabilities in parliament this Thursday, and I aim to keep this at the top of the political agenda until it’s more than warm, woolly words about human rights but a practical lived-in reality for everyone with a disability in the UK.

Government delays decision on funding backdated sleep-in payments

The government has said it will look at the impact of the estimated £400 million cost of paying backdated sleep-in payments on the social care system

by Luke Stevenson on September 29, 2017 Community Care

The government has delayed its decision about whether to support care providers in paying owed sleep-in payments to care staff by a further month.

During this time, until the beginning of November, providers will not be subject to enforcement by HMRC for not paying the minimum wage to staff on sleep-in shifts.

The government has said the decision would “minimise disruption” to the sector while it decides whether the industry needs further support. This could involve the government providing the sector with money to fund backpay though any such support would need to comply with European Union rules on state aid to private organisations.

The issue of backdated payments for employees of care providers doing sleep-in care services arose following an employment tribunal in May, which ruled that workers were entitled to the national minimum wage for sleep-in hours, rather than a fixed rate.

Following the tribunal, the government has waived historic fines for providers found not to have paid staff the minimum wage for sleep-in shifts up to 26 July 2017.

It also suspended HMRC from enforcing back pay and the minimum wage in the care sector for sleep-in shifts until 2 October while it worked out what impact it could have on the stability of social care. This suspension has now been extended for a further month.

Charities estimated this tribunal ruling could leave care providers needing to find £400 million to pay staff for backdated payments over the past six years, while also leaving a £600 million funding gap for payments over the next four years.

The government said the one-month delay would allow it “to establish how providers’ back pay bills will affect vulnerable people’s care”.

“The evidence base will also ensure any intervention is proportionate and necessary and could be required to satisfy EU State aid rules on government funding for private organisations,” the statement said.

“During this temporary pause, the government will develop a new enforcement scheme for the sector to encourage and support social care providers to identify back pay owed to their staff. This will help to minimise the impact of future minimum wage enforcement in the sector while seeking to ensure workers receive the arrears they are owed.”

Glen Garrod, vice president of the Association of Directors of Adult Social Services (ADASS), welcomed the extension, and said any retrospective claim would “seriously threaten” the care market’s sustainability.

“Any potential retrospective claim could severely impact on the care of thousands of older and disabled people and amplifies the overarching need for an urgent, long-term solution to the sustainability of the care market, and a speedy, fair and consistent solution to the issue of sleep-in payments that is fully funded by government. We would welcome clarity and a resolution of the situation as soon as possible.”

Mencap, the charity at the centre of May’s tribunal ruling, said the government’s announcement  was “disappointing”. Derek Lewis, chairman of Mencap, said the delay would leave service users subjected to “more uncertainty and anxiety” as providers were forced to delay essential investment and local authorities struggle to convince providers to take on new contracts.

“It is nevertheless encouraging that the government appears to accept the need to support the sector in dealing with the £400 million back pay liability. It remains essential that the sector receives full funding for this liability to avoid unacceptable harm to people with a learning disability and insolvencies among providers.”

Unison general secretary Dave Prentis said the extension was a “green light for dodgy employers to carry on paying illegal wages without fear of ever being punished”.  “While there may be some sympathy for charities who owe their sleep-in staff money for not paying the minimum wage when they should have been, many care providers are private equity-backed companies that can well afford to pay up,” he said.  “No government or employer should be above the law. By suspending enforcement, we have grave concerns ministers may well have been acting unlawfully and using powers they don’t have.”

Martin Green, chief executive of Care England, said: “We will continue to work with the government during this extension period with the aim of seeing back pay liability fully funded.  However, we must see this issue resolved and are disappointed that the government has not yet made a decision. We also need clarity on the future and how it will be funded.  Providers and the people they care for need certainty”.

The Mental Capacity Act 10 years on: ‘It is still misapplied and used against people’

But the legislation has made social work with adults more relevant and made practice more person-centred, writes Ian Burgess

September 27, 2017 in Community Care

On the tenth anniversary of the Mental Capacity Act 2005 coming into force, many of us are looking back at some of the negatives and positives of the legislation.

My biggest complaint about the MCA is that it is still misunderstood or misapplied and used against people. For example, consider section 5 and best interests decisions, where a professional does not incur any liability for an act in the same way that he or she would not be liable if the person did have capacity to consent and had consented.

The MCA: 10 years on

Today, the Adults’ Principal Social Worker Network is celebrating the tenth anniversary of the Mental Capacity Act. Alex Ruck Keene, barrister at 39 Essex Chambers, refers to a ‘Wild West’ approach to section 5. Section 5 of the MCA intentionally does not give us any authority to do something; instead a professional accounting for his or her behaviour can only rely upon it as a defence. Yet Ruck Keene says many professionals behave as though section 5 provides an authority to act.

Worse still, in doing this the professional might be motivated by a desired outcome from the start, followed by the question: ‘does this person have capacity?” In effect, some professionals want the person to not have mental capacity, in order to authorise their decision making, conveniently forgetting about principles 4 and 5 of the MCA, and section 5.

The MCA then is frequently skewed in practice, not to enable the person, but to provide a dubious mechanism for going against the person’s will.

‘Lawful responsibilities’

I daresay retired senior judge, Denzil Lush, perhaps threw the baby out with the bathwater when he would never sign a lasting power of attorney (LPA), because of the risk of abuse, but I welcomed his recent comments on the subject.

While many express concern about vulnerable adults being scammed, in my experience it is more common for financial abuse to happen because of an LPA. For example, siblings fall out and an LPA (usually for property and financial affairs) is created and then used as a weapon against the other family members.

I have also lost count of the number of attorneys who tell me that they have the authority to make large monetary gifts from their relative’s bank account, or that they can sell their parents’ home and divide the proceeds between themselves. We have a nice chat about the law and invariably the attorney says that ‘no one told them that’.

The solutions to this phenomenon surely rest with the Office of the Public Guardian, which should do more to ensure a) the competency of certificate providers in ensuring the donor can make the decision, knows the implications of creating an LPA and is not under any pressure to do so, and b) that the attorney is fully advised of their lawful responsibilities, that they must have the same regard for the MCA as any health and social care professional. Form LP1F says some of this, but we need more safeguards.

‘Easier to challenge’

So much for the negatives, what about the positives of the MCA in the past 10 years?

Social workers in England and Wales now have the legislative framework they need for intervention rather than vague ‘common law doctrine of necessity’, in which decisions were made with no reference at all to the views of the person, nor any agreement on capacity. People were whisked away into care homes with little or no regard for their wishes. It still happens, but now that can be challenged more easily.

Also, I have known people to say they have felt freedom from social services upon finding that they could reclaim their autonomy and decide for themselves what intervention (if any) to accept from us. It is sad that some of my career highlights have been in undoing what some of my predecessors have done to people.

I wonder how many social workers are saying the same about me, undoing the things I did 15 years ago?

Social workers who have been qualified for more than 10 years might also reflect on how much we refer to human rights these days. I qualified in 2001, the year after the Human Rights Act came into force, yet it wasn’t until the MCA in 2007 that I started to referring to it in reports. Human rights were not mentioned at all in three years at university. But article 8 of the HRA is so deeply embedded in the MCA, and now in adults’ social practice, that I can refer to it here and most readers won’t have to go Googling to see what I am talking about.

‘More relevant and person-centred’

I had not wanted to mention the Deprivation of Liberty Safeguards in this piece, but I do think the Supreme Court judgment of March 2014, especially, has raised the bar in terms of the professional standards expected of social work with adults.

When I first qualified, social work with children sometimes seemed like an elite, while adults’ social work was the poor relation. However, the continuing professional development profile of a social worker with adults will now likely include qualifying as a best interests’ assessor, or having experience in Re: X deprivation of liberty cases or section 21A challenges, or welfare applications in the Court of Protection.

Writing witness statements, instructing lawyers on the local authority’s position, challenging expert witness reports that find incapacity where you enabled the person to make the decision because of your approach and social work skills – all these things have made social work with adults more relevant and our practice more person-centred. And for that we can, in part, thank the Mental Capacity Act.

Changes to the Work Capability Assessment reassessment criteria

29 September 2017

From today, the Work Capability Assessment criteria will change for some Employment and Support Allowance (ESA) and Universal Credit (UC) claimants.

See DWP policy paper

ESA claimants in the support group and UC claimants with limited capability for work and work-related activity (LCWRA) attending a Work Capability Assessment from 29 September 2017 will no longer need to be reassessed if they:

 • have a severe, lifelong disability, illness or health condition

 • are unlikely to ever be able to move into work

Claimants will be told if they will not be reassessed following their WCA.

This change does not affect:

 • ESA claimants placed in the work-related activity group

 • UC claimants who are found to have limited capability for work

Legal Support Project: helping people to get legal assistance

People who have experienced disability discrimination may find it difficult to take legal action because of a shortage of funding or assistance.

In January 2017, the Equality and Human Rights Commission set out to improve the situation by launching the Legal Support Project.

The pilot scheme provided funding and legal assistance to help individuals who have experienced disability discrimination to pursue their claims and access justice.

The project also helped the Commission to gather information about disability discrimination cases where the Equality Act 2010 had been breached, evidence which may inform our enforcement work in the future.

Second round of funding now open

Get in touch

If you are a legal representative or individual and would like to discuss the scheme or to request assistance you can email our legal team or call 0161 829 8140.

If you want to talk about a case in Scotland, please email our legal team in Scotland or call 0141 228 5951.

The Implications of Luke Davey vs Oxfordshire County Council case


Many thanks to Inclusion London for this useful analysis.

The Court of Appeal’s decision in the Davey case: what it means for DDPOs and Disabled people

Luke’s appeal was dismissed.  This is a devastating outcome for him as he won’t only be stuck at home with minimal support he also risks losing his support team, who were with him for 18 years.  The outcome is also disappointing and worrying for other Disabled people, as this case sends a message to local authorities that they can implement whatever cuts they want as long as they follow the right process.

 Posted: 28 September 2017

On the 1st of September the Court of Appeal handed down its judgement in the case of Davey v Oxfordshire County Council.  In this case Luke Davey, who is a former Independent living fund recipient, challenged a 40% cut to his personal budget after the closure of the ILF.

Luke’s appeal was dismissed.  This is a devastating outcome for him as he won’t only be stuck at home with minimal support he also risks losing his support team, who were with him for 18 years.  The outcome is also disappointing and worrying for other Disabled people, as this case sends a message to local authorities that they can implement whatever cuts they want as long as they follow the right process.

To us the case also clearly demonstrated the limits of judicial review in cases where disabled people are trying to argue against professional opinions of social workers.  Judicial review does not look at whether local authority made the right decision or the best decision; it looks at whether or not the decision was lawful.

The decision

The Court of Appeal confirmed that the decision to cut Luke’s personal budget was reached as a result of a lawful process.  Largely the judges agreed with legal analyses and the findings of Mr Justice Morris, who made initial decision in the High Court. Here are some of the most important points:

 • The duty to promote wellbeing in section 1 has 2 aspects: firstly, it requires local authorities to take positive steps to promote wellbeing, and secondly it requires local authorities to pay regard to circumstances listed in section 1.3 of the Care Act 2014.

 • The assessment under the Care Act 2014 is an objective assessment, done by social workers of OT’s for local authorities

 • The wishes of the disabled person may be a primary influence, but they do not amount to an overriding consideration.

 • The UN Convention on the rights of Persons with Disabilities can be used to help interpret the law (with caution), however in this case no particular ambiguity was identified and the balance between person’s wishes and LAs views has been struck in the Care Act itself.  However the Court of Appeal acknowledged that this should not prevent from this point being raised in future proceedings.

 • The judge confirmed that the council was entitled to set a pay of PAs at a lower rate as long as it reflected local market conditions and  that the law did not require it to pay for a more expensive option, which was preferred by an individual. The judges were prepared to accept social worker’s view that the rates reflected local market conditions.  This however potentially puts into questions provisions in the Care and Support Guidance which say that local authorities should choose not the cheapest option, but the one that is best value for money.  The guidance clearly says they should go for an option that better promotes wellbeing and delivers the outcomes for an individual.

Our intervention

Inclusion London intervened in this case.  We wanted to show that the case was not just about Luke’s care package.  It could have an impact on many Disabled people.  Our intervention helped to draw media attention to this case and enable us to talk about our right to independent living in mainstream media.  We also believe our intervention helped to clarify the point that local authorities have to consider what might happen in the future when there is an imminent risk of negative consequences as a result of their decisions.

Besides the fact that Luke lost and the impact this will have on his life, the biggest concern in this judgement from our point of view is the statement about intensity of judicial review in social care proceedings.  The Court of Appeal effectively warned against overzealous analyses of social care assessments.  This is worrying, because life changing decisions are made based on those assessments, and unfortunately there is no other way to properly scrutinise them.  This is why we will continue to lobby for the appeals system, which was meant to be introduced by the Care Act 2014.

The fact that local authorities at the end of the day make final decisions about our needs and how we will be supported is not new.  The law has always said this.  However, many of us felt disappointed when we saw the judgement.  This firstly is because the case clearly shows that in the age of austerity, when local authorities have to find significant savings, the provisions of the Care Act about choice and control do not have teeth.  It also is disappointing for us to see how our views can so easily be overridden by professional opinions of social workers and local authorities not being properly scrutinised for some of the decisions they make.

This was the first case brought under the wellbeing duty and it clearly demonstrated the limits of this duty.  It is worth bearing in mind though that the case was mainly lost because of factual evidence. (Luke couldn’t prove that his PAs of 18 years would leave and refuse to work for less)

Lessons for DDPOs

This case clearly shows that local authorities can get away with implementing even very significant cuts if they follow the process set out in the Care Act and can give a logical explanation to their decisions as well as committing to reviewing the situation and stepping in if things go terribly wrong.

It does not mean however the cuts cannot be challenged; we can and should do this.  Here are some of the basic things you could do to increase a chance of success in your case:

 • Know the process well and challenge when it has not been followed;

 • Ask for explanations early on, ideally with references to the law. Although local authority can submit further explanatory evidence it will be difficult to do so if it contradicts what they said before.  For example, if they are suggesting a cut to your support package, ask them to explain how this will promote your wellbeing;

 • Think of evidence.  If we want to challenge cuts, the onus is on us to prove the impact.  Just a statement from a disabled person will not always be enough. The judges will most likely accept social workers view, unless it is irrational;

 • Pay attention to the assessment process, prepare and clearly explain what you mean.  Make sure to ask for a correction of all factual mistakes in the assessment document;

 • Challenge decisions: yes, this case was not successful, but it cannot and should not deter others from challenging cuts to their support.

We lost this battle, but we will keep fighting.

‘Decisions are being taken out of our hands’ – social workers on care cuts

More than two-thirds of social workers responding to Community Care's survey said they were expected to cut care packages for vulnerable adults because of budget pressures within their council

by Rachel Carter on September 19, 2017 in COMMUNITY CARE

*Some names have been changed

Social workers feel under pressure to reduce care packages for vulnerable adults, with some fearing the reductions are unfair and unsafe, a Community Care survey has revealed.

More than two-thirds (68%) of the 469 social workers and other care assessors in England who responded to the survey said they were expected to cut people’s care because of budget pressures within their council.

More than a quarter of respondents (28%) also said they did not feel confident that the reductions they have made to care packages were fair or safe.

How to deal with the pressure to cut costs

Support and advice on how to deal with the pressure to make savings through reviews is available at next week’s Community Care Live.

Care Act consultant Pete Feldon will set out how you can carry out reviews in a way that is legally literate and maintains sound professional judgment, in a session on Tuesday 26 September, the first day of the conference.

Register now for your free place.

The survey was carried out by Community Care and the Care and Support Alliance, a coalition of over 80 charities representing older and disabled people and their carers.

It also found:

  Less than half of respondents (43%) felt decisions about a person’s care and support were being left to their professional judgements.

  More than a third (37%) said they felt unable to get people the care they need.

  Less than half (38%) felt supported to have difficult conversations with service users and their families about meeting needs and changes to their care.

BASW said the findings highlighted the complexity of adults’ social work and the “increasing pressures of budget and target driven demands”.

UNISON said the impact of council cuts had been “devastating” and social workers’ professional judgements should not be “restricted by dwindling budgets”.

The Association of Directors of Adult Social Services said social care remained at a tipping point and the survey laid bare the “invidious decisions” social workers are making every day.


The findings are set in the context of six successive years of cuts to council budgets. Since 2010, directors have made £5.5.bn worth of savings from adult social care, and estimate that another £1bn needs to be found this year. Efficiencies and back office savings options have been exhausted, which means care packages have come under increasing scrutiny.

Last year, ADASS said 24% of planned savings for 2016-17 were due to come from reducing people’s personal budgets, or cutting back services. This fell to 19% for 2017-18.

In November 2016, the Local Government and Social Care Ombudsman reported that in 2015-16, it received 600 complaints about assessments and care planning; more than any other area of adult social care. It upheld 59% of the 300 complaints it investigated in detail.

The ombudsman’s report also warned that while the pressures on council budgets were well understood, local authority care provision should be determined by an individual assessment of need and take into account a person’s preferences.

Community Care also found eight examples of cases investigated by the ombudsman in the past 12 months, where councils were criticised for reducing care packages without a proper assessment of need, without explanation, or without considering the impact on individuals.

The majority of respondents to the survey (83%) had cut at least one care package in the past 12 months. Most (54%) said they had cut between one and 10, while 13% said they had reduced more than 20. The three types of support being cut most frequently were social and leisure activities, domestic tasks, and support to help people access their local community.

‘Losing a lifeline’

“Transport seems to be a major cutback. It used to be a local authority-run service but is now commissioned out. We’re encouraged to use the ‘door-to-door’ service because it’s cheaper and something that the service user can pay for.

“However, it doesn’t turn up at the times the day centre opens and so service users miss several hours a day of the centre experience. This is a big deal to people who use those centres as their lifeline.”

Source: a respondent to the survey

‘Change in need’

Respondents were also asked to list, in a free-text box, the reasons why they had reduced care packages. While a change in needs was listed as the most common reason, many also cited budget pressures and restrictions around the types of support their council will fund.

Some social workers said they were facing pressure from managers to reduce people’s care and support, or that the ‘strengths-based’ approach, a model of assessment which focuses on people’s strengths, rather than what they can’t do, was being used as a guise for cuts.

A number of respondents also pointed to a rise in the creation of funding panels, which are usually made up of service managers, to make decisions about care packages.

Earlier this year, a legal expert warned panels were now “rife in local authorities”, but were not being used in line with the Care Act. The guidance says panels might be appropriate for signing off large or unique care packages, but should not be used to “amend planning decisions, micro-manage the planning process, or be used purely for financial reasons”.

One social worker responding to the survey said:

The council has decided they will no longer fund medication or lunchtime calls. These reductions are being agreed at a panel without social work recommendations.

‘No choice and control’

More than three quarters of respondents (83%) to the survey did not think there was enough varied and quality provision in their local area to ensure service users had genuine choice and control over the care they receive.

Under the Care Act, local authorities are expected to shape local care provision to ensure it meets the needs of all people who require care and support, regardless of who funds it. The guidance states that councils should encourage a “diverse range of appropriate, high quality services” and ensure “the market as a whole remains vibrant and sustainable”.

More than half of respondents (51%) also said their council was placing exclusions on what people could spend their personal budget on to meet their eligible needs. Transport, social activities, shopping and other domestic tasks were again frequently mentioned.

One social worker responding to the survey said:

It has become so much more stringent lately. Everything has to be itemised and decided upon in advance. It removes the spontaneity of choice – and that, in itself, is restrictive

‘Uncomfortable position’

In-depth interviews with social workers who responded to the survey further highlighted the difficult decisions they are having to make in the current financial climate.

Sarah*, a social worker in the West Midlands, told Community Care that the atmosphere on the frontline in adults’ services now felt “very restrictive and frustrating”.

More on this story

‘The standard response is wear incontinence pads in bed – even if you’re not incontinent’

The Care and Support Alliance: ‘How ‘personal’ are personal budgets in 2017?’

“As a social worker you come into the profession because you want to help people improve their quality of life, but it feels like you are becoming increasingly limited in your ability to do that and there is an ever-growing number of hoops to jump through,” she said.

Sarah said the toughest conversations were with service users who had received support for 20 years and this was now being questioned, despite there being no change in their needs.

“I find that very difficult and I’m not sure how comfortable I feel with that legally,” she said.

“We’re not supposed to do reviews just to cut care packages and you’re not supposed to necessarily cut things unless there has been a change in need.”

‘Expectation to reduce’

Lucy*, an agency social worker who has worked in Greater London and the North of England, said she has seen an increasing use of funding panels, with one council she worked for using a panel to agree “every financial decision or review”.

The social workers would often decide what would best meet the needs of a person, only to be told to try something else, she said.

“Things were taken out of our hands. At that point the panel were almost making casework decisions and telling you what you needed to do,” she said.

“I really hated that and so did all the other social workers I came across.”

She added that there was “no doubt” decisions about care were being financially driven, and sometimes “your professional opinion is overridden because of the need to reduce costs”.

“At each review there is an expectation [to reduce] – it’s dressed up in terms of value for money, because that doesn’t sound quite so bad as reducing people’s care,” she said.

“But that’s what service managers do, they sit in their office and work out how to reduce these expensive care packages because that is what the council is expecting them to do.”

‘Devastating consequences’

Maris Stratulis, manager at BASW, said: “The survey results highlight the complexity of social work with adults and the increasing pressures of budget and target driven demands. Social workers are experts in their own profession and need to be afforded the respect, value and support to do their job effectively, remaining person-centred at all times.

“BASW, ADASS, the Local Government Association, and other user and carer groups have an important role to play in highlighting the impact of budget restraints and finite resources to MPs and ministers. We must constantly strive to ensure high standards of professional practice and keep users of services and their carers at the heart of what we do.”

Matthew Egan, social care officer at Unison, added: “Social workers and other staff should be able to make care assessments based on their professional judgement and not be restricted by dwindling budgets. The huge cuts ministers have made to council budgets have had devastating consequences for the provision of care to those people in need.

“We see people effectively being abandoned and let down. It is not fair on social workers and it’s certainly not fair on care users.”

‘Invidious decisions’

Caroline Abrahams, co-chair of the Care and Support Alliance, said it was impossible not to be “angered and saddened” by the social workers’ descriptions of what the cuts mean for older and disabled people, and those with mental health problems.

She added: “It is though important to remember that while social care is a service administered by councils, the buck stops with ministers, and the suffering that vulnerable people are experiencing today is the direct result of the decisions successive governments have made to underfund social care.

“The extra £2bn this government has pledged will certainly help but the funding gap is far larger, so the situation is certain to worsen without further action.”

Margaret Willcox, president of ADASS, said: “This telling and poignant report lays bare the invidious decisions that are having to be made by social workers and managers every day.

“Working within finite budgets is challenging and staff have to consider how best to meet assessed needs within those financial parameters. Adult social care remains at a tipping point and this survey is further evidence of why the issue needs to be treated as a national priority. We look forward to contributing to debates about funding a long-term sustainable solution to adult social care funding and delivery.”

A spokesperson for the Department of Health said: “We know social workers do incredible work and we want to make sure that everyone, especially older and vulnerable people, receive compassionate care. That is why we have enshrined in law in the Care Act that local authorities must assess and meet the needs of people in their area.

“We have provided an additional £2 billion for social care and have committed to consult on the future of social care to ensure sustainability in the long term.”

‘We are not a load of tins in a supermarket, we are human beings’Rachel, 30, is visually impaired, has dyspraxia and autism.She received 17 hours of support a week for eight years, to help with cleaning and cooking, managing her medication and personal care. Two years ago her care was reduced at a review to just five hours a week.

Rachel was left with no one to help manage her medication and this meant she missed doses and had a seizure. To make things worse, while recovering she mistook her dog’s flea medication for her own and ended up in hospital. Rachel says these two incidents knocked her confidence and she became demotivated. She also stopped taking her anti-depressants

“Being in hospital left me feeling anxious and upset and I worried if something else might happen once I got home,” she says. “It had a massive impact on me.”

“I kept forgetting my tablets and I was struggling to keep a lid on my depression. I wasn’t interested in doing anything, I would only go out to take my dog out.”

Rachel’s care was reinstated and she now receives 20 hours of support a week. She says things are much better now because she’s “not being left alone for days at a time” and is on top of her medication.

She also receives some social support to help her get out and about.

She adds: “I don’t want this to happen to someone else. I was lucky that I had support from other people [when my care was cut], but there are people who don’t and that’s dangerous.

“We are not talking about a supermarket and a load of tins here, we’re talking about people, human beings, and I think sometimes that gets forgotten.”

How ‘personal’ are personal budgets in 2017?

Although the Care Act placed legal force behind personal budgets, responses to Community Care’s survey suggest they are not offering the choice to recipients that was intended

September 19, 2017 in Adults, Care Act 2014

By Caroline Abrahams

It is becoming increasingly challenging to deliver personalisation as demand for social care progressively outstrips the resources the government is making available.

The Care Act 2014 gave personal budgets a big push, stating for the first time that everyone with an eligible need for social care should be given one.

This was in keeping with the view that personal budgets are an effective mechanism for putting the philosophy of ‘personalisation’ into practice.

However, comments from many respondents to a survey undertaken earlier this year by Community Care, supported by the Care and Support Alliance, suggest that the choice personal budgets are designed to offer is rapidly disappearing.

Councils are clamping down on how this money can be spent, increasingly requiring it to be used only for ‘personal care’ in the narrowest sense. To be clear, as long as the budget is spent on meeting eligible needs, the individual should have flexibility about how to spend it. Instead, certain activities are being excluded arbitrarily.

Care Act guidance on personal budgets

Chapter 11 of the guidance deals specifically with personal budgets. It states (paragraph 11.3) that the personal budget is “the mechanism that, in conjunction with the care and support plan, or support plan, enables the person, and their advocate if they have one, to exercise greater choice and take control over how their care and support needs are met.”

This includes having a choice over who is involved in developing the care and support plan for how the personal budget will be spent, including from family or friends; and having greater choice and control over the way the personal budget is used to purchase care and support, and from whom.

The guidance also outlines the importance of transparency, timeliness and sufficiency in calculating the personal budget. Paragraph 11.29 states that the person “should have the maximum possible range of options for managing the personal budget, including how it is spent and how it is utilised”.

Numerous examples were given of councils prohibiting people from spending their personal budgets as they might wish. Excluded activities included transport, social activities, shopping, housework, washing and ironing, gardening, cooking (apart from microwaving), food and drink, equipment, trips and holidays, and university courses.

‘Eating alone’

The aim of saving money in order to spread the social care jam more thinly was clearly the rationale for these restrictions. Respondents suggested that in some cases, costs were being shifted elsewhere; for example, onto Attendance Allowance or onto other benefits so an expense, such as help with domestic tasks like shopping, had to be paid out of the person’s income; or onto the NHS in the case of anything that could be deemed ‘a health-related need’ (e.g. funding travel to the local MS centre).

In some cases such strict limits on where social care starts and ends makes things nearly impossible to do in practice, for example:

“The money cannot be used to pay for a personal assistant’s lunch when they are supporting them out to lunch, so the service user has to eat alone or the personal assistant pays out of their own money.”

“Direct payments can be used for the care a service user needs during an activity but not for an entrance fee for the support worker, nor bus fares or other expenses incurred by the support worker that are not related to personal care. This leads to individuals having to pay these additional costs for the support worker in order to have the support.”

‘Heavy scrutiny’

Some comments suggested that the restrictions were resulting in people’s wishes being ignored, limiting their ability to live a meaningful life:

“All leisure activities that don’t have employment outcomes are now excluded. Spiritual needs to worship in a community are not funded (for example, transport to church).”

“The personal assistant is not funded to wash and style a person’s hair after they have had a shower. This should be a privately funded arrangement with a hairdresser. The personal assistant is also not funded to feed the dog or let it out.”

Some respondents to the survey also expressed serious concern about what they regarded as the undermining of the original purpose behind personal budgets:

“My local authority states that direct payments cannot fund transport or social activities. That is not backed up in any policy documents, so it is basically a self-fulfilling statement which means new/ less experienced social workers don’t even apply for those items and the status quo remains.”

“There is an emphasis on traditional care services, any leisure activities or more bespoke arrangements are heavily scrutinised and unlikely to be agreed, except in exceptional circumstances.”

“There is a constriction on choice, creativity and recognising the diversity of people’s needs and priorities.”

‘Honest debate’

The often quoted, archetype example of the benefits of personal budgets is of a young man with complex disabilities who chose to spend his personal budget on a caravan by the sea. He and his parents used it at the weekends and during holidays. This worked well for all of them and ultimately it saved money too, as well as improving the young man’s outcomes. However, it is notable that one respondent to the survey said their council had specifically prohibited personal budgets being spent on caravans.

Of course, against the context of acute pressures on social care budgets, it is not surprising that managers should be seeking to save money wherever possible.

Last year, the National Audit Office called on the Department of Health to investigate how these savings were affecting the delivery of personalised care and service users, but this challenge was not picked up. It is now time for an honest and open debate, with councils at the fore, about the challenge of delivering personalisation as demand for social care progressively outstrips the resources the government is making available. That would serve those who need care well and arguably councils too.

Caroline Abrahams is charity director of Age UK and co-chair of the Care and Support Alliance. The CSA represents 80 charities and campaigns for a properly funded care system.

‘The standard response is wear incontinence pads in bed – even if you’re not incontinent’

Social workers responding to Community Care's survey on care package cuts described the impact some reductions have had on people's lives

by Rachel Carter on September 19, 2017 in Adults

The findings of a Community Care survey, published today, highlight the difficult decisions adults’ social workers are having to make in the current financial climate.  The survey asked social workers to share examples, from their professional experience, of where care packages have been cut and to describe how this had impacted on a person’s wellbeing.

It can be appropriate and safe to reduce a person’s care where, for example, their needs have decreased, and practitioners responding to the survey shared some positive examples of where reductions had helped people to regain independence, increase their wellbeing through moving to a more appropriate care setting, or build new social and community links.

However, social workers also shared the following stark examples of the human cost of social care cuts and the negative impact cutting a person’s care can have on their life.

“A common example is not allowing budget to be used for night care. The standard response is ‘wear incontinence pads in bed’ – even if the person is not incontinent!”

‘Reducing the social support in a care package for three brothers who live together. Each has either a mental health problem, physical or leaning difficulty. They have had a substantial care package for approximately 15 years, which kept them safe from financial abuse and enabled all three to continue to live together in the community. After reducing the care package, two of them went into residential care and died. The other was admitted to hospital with dehydration and hypothermia.”

“A person with hoarding issues and a tendency to eat rotten food had their shopping and housework call cut. This resulted in an admission to hospital with food poisoning.”

“I was moved off a case because the cost of the home care package was too high and I refused to ‘put’ the client in a care home against his wishes. He was incapacitated but his wife fought, the next case worker did the same thing and he went home. There were no support services for his wife, who provided most of the care and was frail emotionally, because it was ‘her choice’ to have her husband at home. She, and other professionals, were unhappy I had been removed from the case and I was not allowed to say the truth. I left not long after.”

“A husband and wife both with learning disabilities were no longer able to attend a day centre as the budget was stopped. They couldn’t afford to attend privately at £48 per day, so they lost some social relationships and meaningful activity.”

“A person who previously lived in a private rented house with a live-in carer was moved to a supported living service, which was cheaper because the core support hours were shared with the other tenants. The person was initially keen to live with others, but quickly realised they had lost a lot of choice, control and independence. The limited core support provision reduced the amount of activities that the person could do in the community and struggled to meet the wishes of all tenants. The person became low in mood and there were more self-harming incidents.”

“I worked with a woman who could strip wash but couldn’t reach her back and intimate parts of her body, so she had paid carers for years as part of her personal budget to help her. However, her budget was cut because she was deemed physically able enough to strip wash. This was devastating for her and she explained feeling like she was not being treated as a human but instead as a burden.”

“I work in mental health where many of the areas cut, such as shopping or accessing the community, are central to an individual’s need for support but there is little we can do as third sector services are dwindling and people can’t afford to self-fund. It feels as though in most cases the only funded support we can offer is with personal care.”

“I have had much experience of reducing care packages, allowing time only for essential tasks associated with risk. This amounts to carers only having time to dash in and wash, toilet and water those in need. The process can almost be automated and offers little opportunity to provide compassion or quality.”

Lessons for social workers from Luke Davey’s Care Act appeal

Care Act trainer Pete Feldon reflects on the court's ruling that a social worker's views were genuinely held, despite contradictions between statements.

September 6, 2017 in Adults, Care Act 2014

By Pete Feldon

Luke Davey’s legal challenge to cuts to his personal budget is the first time that the Court of Appeal has ruled on the Care Act 2014 and the earlier judicial review was also the first of its kind, so it is important that social workers reflect on the implications of these rulings and learn how to avoid judicial reviews in similar circumstances.

In dismissing his appeal, the court ruled that the views expressed by the social worker in witness statements were genuinely held, and also that it was right that the court should take them into account even though they were not in accord with the case records. This means that where a case goes to judicial review, clarifications set out in witness statements can be accepted where they significantly add to what is set out in the case records – even if they might be contradictory.

Luke Davey was appealing against some of the decisions of a judicial review in March. He was seeking to overturn the reduction to his personal budget made by Oxfordshire council, which was previously part-funded by the Independent Living Fund. The council reduced Luke Davey’s personal budget from £1,651 per week to £950 per week after the ILF closed in June 2015.

The primary focus of the appeal was in relation to Section 1(3)(d) of the Care Act, which states that in promoting an individual’s wellbeing a local authority must have regard to “the need to ensure that decisions about the individual are made having regard to all the individual’s circumstances”.


In the judicial review it was highlighted that there were contradictions between the case records and the professional judgments set out in the witness statements, about the extent to which Luke Davey could spend time alone. The subsequent witness statements provided some clarity about the relationship between Luke Davey’s needs and how they would best be met, and at the judicial review the judge was able to conclude that there was some merit in the social worker’s contention that spending time alone would help Luke Davey in developing independence.

As part of the case in the Court of Appeal, Luke Davey’s legal representative challenged the validity of this aspect of the social worker’s witness statement as being “an afterthought not expressed in the contemporaneous documents”. This challenge was rejected and Lord Justice Bean stated that he agreed with the observations of Hallett LJ in R (Ireneschild) v Lambeth LBC [2007] EWCA Civ 234, paragraph 57:

One must always bear in mind the context of an assessment of this kind. It is an assessment prepared by a social worker for his or her employers. It is not a final determination of a legal dispute by a lawyer which may be subject to overzealous textual analysis. Courts must be wary, in my view, of expecting so much of hard pressed social workers that we risk taking them away unnecessarily from their front line duties.”

This adds to what Justice Morris had stated in the High Court judgement. He responded to the submission on Luke Davey’s behalf that “further evidence … explaining the assessment and personal budget should not be admitted, where they contradict the contemporaneous record”, by stating: “Even where a needs assessment has been found to have been inadequate, there may be no point in exercising discretion to order relief, where due to subsequent explanations it is clear that re-assessment would lead to the same result and it is now fully and adequately explained.”

The Court of Appeal also made it clear that it would not rule on the criticism of Luke Davey’s legal representative that the view expressed by the social worker was irrational. The judge stated: “I am not an expert in the field, and I cannot possibly say that the view expressed by Ms Lovelock is irrational.” However, whether or not the social worker’s view was irrational was not considered significant by the Court of Appeal, as it had already made a determination on the issue in question, i.e. that there was no evidence that the existing team of personal assistants would break up.

Needs assessment

The original assessment took place shortly after the Care Act was implemented in April 2015, at a time when social workers were still adjusting to the new requirements. It was certainly the case that what was set out in the case records was not expressed in a needs-led way. It is possible that a judicial review might have been avoided if the original needs assessment was more in accordance with Care Act principles: i.e. setting out the activities and tasks that Luke Davey has difficulty with as a result of his physical impairment; determining the extent to which these have a significant impact on his wellbeing; and then developing a plan to reduce the impact, utilising his strengths and preventive services. An outline of how this could be achieved is included in my analysis of the judicial review published in March 2017.

Where social workers are able to apply the legislation in a legally literate way and are not hampered by poorly drafted local policies and procedures, disputes that result in judicial reviews will be unlikely in respect of their professional practice. However, it remains to be seen whether legal challenges will take place on the key issues of what constitutes significant impact on wellbeing and determining the sufficiency of a personal budget to meet needs.

Pete Feldon is an independent Care Act trainer and author of ‘The Social Worker’s Guide to the Care Act 2014’, published by Critical Publishing in May 2017 and the A-Z of the Care Act 2014 available on Community Care Inform Adults. You can hear Pete speak at Community Care Live London on 26 September on ‘Carrying out legally literate reviews where there are pressures to make savings’.

Failing benefits system leads to ill-health and isolation for disabled people

Posted on September 13, 2017

A benefit designed to support disabled people is making their health worse and leaving them isolated, according to new research from over 80 organisations.

In a survey of over 1700 people with long-term conditions including Parkinson’s, multiple sclerosis, epilepsy and mental health problems, more than three quarters (79%) of respondents said their assessment for Personal Independence Payment (PIP) had made their health worse due to stress and anxiety.

Read the full report here

Read the executive summary here

It is the first time that PIP, which is designed to help people with extra costs caused by long term ill-health or disability and replaces Disability Living Allowance (DLA), has been evaluated in this way.

The organisations that make up the Disability Benefits Consortium (DBC) warn that although PIP is a lifeline for disabled people when they can access it, the findings provide clear evidence that in too many cases, the assessment process is failing people at every turn and having a devastating impact on their health.

As part of their report Supporting Those Who Need It Most? launched today, the DBC surveyed more than 1,700 people and found that applicants are facing unnecessary barriers to accessing the support they need, including:

 ▪ Almost three quarters (71%) of respondents found the PIP application form ‘hard’ or ‘very hard’ and 11% of respondents were unable to complete it at all

 ▪ Over half (58%) of people said that assessors did not understand their condition

 ▪ Two thirds (64%) of people who saw their claim form felt it ‘badly reflected’ the answers they had given in their face-to-face assessment

As a result of this flawed assessment process, people are losing out on vital support with half (50%) of respondents saying they were receiving less money under PIP than they were previously entitled to under DLA, or they had lost their award completely.

The report warns of the devastating consequences this is having, including people:

 ▪ becoming more isolated (40%)

 ▪ struggling to pay for food, rent and bills (35%)

 ▪ not able to get to medical appointments (26%)

The report also shows that the number of decisions being overturned at appeal is increasing. In 2013/14, 26 per cent of decisions were changed in favour of the applicant. In the fourth quarter of 2016/17 this had increased to 64 per cent.

The DBC say this suggests the assessment process is failing to make accurate decisions first time around, leading to further stress for the applicant. In addition, it is estimated people face a 17-week wait for their appeal without access to the financial support they desperately need.

Diane Barrett from Battersea, South London was diagnosed with Parkinson’s in 2008. She was receiving the highest rate of Disability Living Allowance for seven years but after her  reassessment for PIP she was told her needs had changed and she lost the £57 a week she was receiving to pay for a mobility car. She had to take her case to a tribunal to get the decision over-turned.

Diane explains: “I was absolutely gobsmacked when the letter came. To be told I had improved when I’m living with a condition that is only going to get worse was horrible.

“Without the allowance I couldn’t have a car which had a massive impact, it totally took my independence and my lifeline away. I find it hard to use buses and have fallen a couple of times when I’ve tried so it was quite scary.

“It also made me realise how bad my Parkinson’s was, going through the process was a constant reminder of my diagnosis. I can normally stay positive but the stress made me worry about the future and I became depressed. This led to lack of sleep and that caused my tremor and stiffness to get worse. I felt very isolated.

“I ended up going to a tribunal and it took just ten minutes for the judge to overturn the decision.

“As soon as it happened, my son and I looked at each-other and cried with relief. I felt that finally someone was listening to me and believing me about how my condition affects me. It had been so stressful and confusing from start to finish, I was glad it was over.

“I wish the government would think more about long-term conditions. People with conditions like Parkinson’s and MS are not going to get better, the system just does not take that into account.”

The DBC is now calling on the government to urgently review PIP and make much-needed improvements including simplified application forms, improved knowledge for assessors and indefinite awards for people with progressive conditions, removing the need for people to constantly be reassessed.

Phil Reynolds, Co-chair of the Disability Benefits Consortium and Senior Policy Adviser at Parkinson’s UK, said:

“For the first time, these findings paint the true picture of what it is like to go through the complex assessment process for PIP.

“Shockingly, a small number of people told us the experience of claiming PIP was so distressing that it has caused new conditions to emerge, or even caused suicidal thoughts.

“It is clear that PIP is failing many people from start to finish so it is vital the government work with us to get a grip on PIP and support everyone who needs it, instead of making their health worse.”

The decline of local welfare schemes in England

courtesy DRUK

September 2017

Local welfare provision in England is at risk of collapsing if Government does not urgently review its approach and step in with more funding for local authorities. A failure to act will create widespread destitution, and put even greater pressure on already over-stretched housing, health, and social care services.

Those are the key messages from our new report – ‘The Decline of Local Welfare Schemes in England: why a new approach is needed‘ – which is published today (Weds 13th September).

The report follows an in-depth review of the outcomes from Government’s decision to abolish Crisis Loans and Community Care Grants and its replacement of these with ‘local welfare schemes’. It finds that the policy, adopted in 2013/14, has resulted in widespread cuts to the support that households receive when they experience a financial emergency or need help to live independently.

The research, which was funded by the Barrow Cadbury Trust, involved a desk based review of all local authority schemes in England, incorporating an assessment of Cabinet and Committee papers detailing current budgets for local welfare schemes and the reasons for cuts. From this exercise we were able to obtain information about current funding levels for schemes in around 70 percent of English local authorities. We also conducted interviews with eighteen people who have directly affected by the closure of schemes in Northamptonshire, Nottinghamshire, and Oxfordshire.

Key findings

 • Twenty six local authorities have now closed their schemes altogether;

 • A further forty one authorities have cut back spending on their schemes by over 60 percent;

 • Eleven of these have cut spending by over 80 percent and their schemes are now on the brink of collapse.

The cut backs, combined with benefit delays, are creating destitution.  For example, an unemployed 56 year old man in Nottinghamshire (which closed its local welfare scheme in 2014/15) told us how he has had no money for eight weeks because of delays in processing his benefit claim; he has been forced to use food banks, can’t pay the rent, and is on the verge of being made homeless.

They are also making it harder for people to live independently. For example, a 46 year old woman in Oxfordshire (which closed its scheme in 2014), and who was re-housed after a lengthy period of homelessness, has been living in a flat without any cooking facilities or bed for four months.

The report reveals that cuts to local welfare schemes are particularly affecting people with long-term illnesses or disabilities, young people leaving care, women fleeing domestic violence, people with prior experience of homelessness, and frail elderly people returning to their homes after a stay in hospital or who are struggling to remain independent and avoid going into care homes.  Cutting across these groups, the reduction in support is having a disproportionate impact on low income Black and Minority Ethnic communities.

The report also finds that cuts to local welfare schemes are counter-productive as a means of saving money as they are increasing the numbers of people needing higher cost interventions to help them with their deteriorating circumstances.  Relatively small grants can help people avoid homelessness, and reduce the pressure on health and social care services.

Summarising the findings, report author, and CfRC Director, Damon Gibbons said:

“Local welfare schemes are in meltdown. Government continues its assault on local government funding whilst trying to avoid responsibility for the consequences.  Our research reveals a depressingly bleak picture as a result.  More pain and misery for those individuals who fall on hard times and greater demand on housing, health, and social care services.  An urgent review of this policy is needed.”

An Individual View of the Luke Davey Appeal Court case


September 2017

Last Friday the Appeal Court handed down their judgement in the Davey vs Oxfordshire Council case and in short said that a Judicial Review process wasn’t the right place to argue against cuts to care funding. Where that leaves disabled people who face cuts to their funding we have no idea or where such cuts are supposed to be challenged remains a mystery. This is one person’s view of the court proceedings and the appalling lack of access for disabled people to our court buildings -even when the cases being heard are about disabled people’s rights.

Judge, Jury and Execution of basic human rights: A court case about Independent Living money for disabled people


I didn’t know Luke Davies’ specific story when I got the email, but we the people;  disabled people, our friends, family, carers, lovers and by the horror stories we constantly hear about and live every day, we can get the gist of it. The last dregs of our welfare, that the state drip feed us – our last remaining nationlised services, our Independent Living, our humanity, have been smacked out of our gasping selves by privatisation. I didn’t know Luke Davies or the story that surrounds him and his loved ones, but by god, last Thursday, when we finally managed to go to court about the abomination that is happening to us and our public services, did we hear the specifics of our story.


That was why it was so crucial for our voices to be heard, for us to be seen outside the Royal Courts of Justice – in part by the media including the BBC and ITV no less, and to be there for our brother Luke and his family.


I love how these images show all of us, disabled, enabled, young and old, black and white, different expressions of gender and identity, our intersections being made visible, loudly, joyfully at times, coming together against our current capitalist nonsense. Shout out to [what are their names?]  serving Annie Lennox militant revolutionary, circa Love is a stranger https://youtu.be/o6f593X6rv8?t=2m7s  realness.

Some of us couldn’t get in. We couldn’t even get into the front entrance, we were shooed round the back, “lack of staff” the same story


I for one managed to get in, just about. After you cower under the cathedral of enormous white stone architecture, up the hallowed steps, not accessible of course, you heave at the heavy door, there’s airport type security, which, I for one get intimidated by. Have I got anything weird in my bag? I have moisturiser will they think it’s a jelly explosive? I have water – acid? You have to drink your liquids to prove it’s not anything and potentially die in the process. After that malarkey, you’re finally and officially inside the Cathedral of Money. The main hall is like an aircraft hangar, it’s stupidly gigantic and decorative. Rich Old White Men in oil paintings glare down at you. Walking with our footsteps echoed 10 fold, someone among us said these places are designed to intimate you, if so, it was working.


The courtroom had been changed because the original room for a DISABILITY CASE WASN’T ACCESSIBLE. We had minutes to find it. We were given a map and escorted into a tiny old lift, half the lights were broken and the ones that were had a glare so everything had even more of an off-putting edge to it. When we churned out the place was an old white maze; a rabbit warren of inaccessible stairs, arrows pointing toward more stairs, a massive courtyard then more arrows pointing you to another flight of stairs. When you need the bathroom guess what comes before you? Yes, well done. It looked and felt a bit like this.


But what of the main man himself? We waited and had even signed a birthday card for Luke. Of course, due to taxis not being able to find accessible spaces, Luke and his family were running late. Two years of atrocity, heartache and stress built upon this day, built by structures that don’t accommodate people like us. When Luke and his family finally got there, him and his family didn’t seem there at all, as you’d expect, distant and full of nerves. All that agony and they had to wait even longer for justice.  The time lurched ever closer to the start of the proceedings, a friend of mine was missing, so I ran down to find them.


Blinking in the burning sun outside, they texted that they were coming so I ran back up the moneyed stairs. I had to go through security again of course. I couldn’t hear the throngs of us in the corridor, it must have started. Deathly silence, on tiptoes, wincing, I opened the door, deathly silence. Nothing, a corridor! Another door, I was in – full of serious suits and wigs; more vacuum-packed silence for the wigs and suits, I tripped over someone’s crutches, clattering them in the hush. I dived into the closest seat.


I missed the bit you see in TV and films where you stand for the judge and his knockers which was a bit gutting. He didn’t have a black robe on, nor a wig, I didn’t see a hammer (gobble?) unfortunately, was he even the judge? Who were all these people? It looked like the room the phone hacking scandal took place in, sterile and plastic. It wanted to look official but was more office-y not court-y i.e. wood paneled but  totally didn’t look like it save for the seating arrangements and slightly raised desks. I couldn’t see a jury and there were microphones and laptops everywhere, even the person sitting next to me in the audience had one, which was a distraction. As was having a Vicar sat next to me, on a smartphone. There were wigs though, old white wigs, blonde no less.


But what were the wigs saying? It wasn’t like the traditional court room dramas you see on screen with lawyers jumping up screaming, “OBJECTION!” and a judge crying for order whilst a witness actually cries then the handsome lawyer delivers an impassionate call to arms for truth and beauty and all that is good in this world in an earth shattering emotional speech wherein the whole court starts crying and the jury hugs it out. No, this is England and a Thursday morning in reality. It is pure, dry, uncut incomprehensible legal jargon for four plus hours. Dirge-y doublespeak. It’s delivered not only in a monotone, hardly any emphasis or change of pitch, rhythm or emotion on any word or phrase so you may have some indication of where it was all going. Crucially though, it’s delivered in list, alphabetical and numerical order with a lot of subsections, pages and files. “Supplementary file, page 51, Section D, subjection E points 1-15”. Pages are flipped, we wait, it’s read out, then we move on to the next clause, we wait. There are zero surprise witnesses in judicial review apparently.


But could we hear what the wigs were saying? The Judge bashfully reiterated the fact that they were trying to have the hearing loop configured after the lunch break – not before the lunch break, or before we arrived or just working already for anyone, it being a crucial public space where it’s quite important to hear what’s going on of course, after the lunch break. Have a break, have some equal participation in democracy and society. They weren’t aware of the in’s and outs of Hearing aids they admitted. They also admitted their lack of knowledge when it comes to wheelchair access, one guessed that you just hire them out. Admittedly, that could be a good start up for anyone reading this, Uber but for wheelchairs. We’ll come back to this idea, seriously.


Anyway, what was being said in the courtroom was delivered in an alien (but not in a fun way) way. Truth be told, I had absolutely no idea what was going on. I think the basic premise was that our defense for Luke was going through The Care Act 2014 as well as some other legal business step by step, subsection by subjection, to illustrate our argument and counteract the prosecution’s argument. All using extremely dry words, phrases and general legal talk that I’d never heard before. Nor was it said in an explanatory clear way, with…Pauses…and…Stresses…But-listing-it-all-off-as-everyone –else-seemed-to had-heard-it-all-before. I only gleamed he was The Goody because a friend said so.


As I waded through the jargon river a wild Vicar appeared as well as his wild blue bird twittering away in my field of vision. A Vicar on Twitter in court. An elderly person on social media in court no less. I was “skunnered” by as Scots say.


He had a hearing aid which kept ringing and squealing so he kept adjusting it, bless him.  He was the one the hearing aid chat was about. When this chat commenced he clearly couldn’t hear it. I had to give him a nudge. He let the hearing commence without his hearing. He then very loudly tried to have some hearing aid banter with me mid court session to which we got an ear-full.


He got back to his phone tapping away. It was like being in a cinema and there’s that one glare that distracts you. When he got bored he checked his emails. When he got bored of his phone, he got out a flipping magazine. Not a glossy but a paper one which you can really hear. Especially in a quiet court, leafing away, very slowly which prolongs and really makes audible that papery sound, folding the whole thing it in half or more over each time like some people do with broadsheets newspaper but with an A4 magazine, to his credit, The Big Issue. When he got bored with that he stage whispered his apologies and that he had to go, shuffled very slowly out with a final “SOLIDARITY!” to everyone.


So that all didn’t help my attention, nor did all the clacking of laptops, shuffling of paper, people pacing around, whispering, writing, doing legal things, in and out of the court. The worst of it being that they all try and do it very discreetly, as slowly as possible do detract attention but that gives them more attention as they’re going about it so slowly and clearly that you wonder what the commotion is and what they’re trying to do so subtly and BOOM! You’re attentive. What also didn’t help my attention was an attractive intern was potentially checking me out. Was he? When you’re in a space for a prolonged amount of time these issues take precedence unfortunately. It doesn’t help that when someone looks at you, you usually look back, this tennis match of eye contact and ‘Is he isn’t he’ happened for a ridiculously prolonged amount of time.


Any road, I loved our lawyer. Despite it all being dusty and dry in a format that was unfamiliar, his delivery was still pitch perfect; no stumbling, stuttering, hesitation or repetition but concise, calm, covering every square millimeter of ground and extremely methodical about it. He lined up our case extraordinarily literally to the letter. Perhaps that might have been to his detriment to which  we’ll come back to, too. I think the Judge loved him too who seemed to truly understand his points by rephrasing them and not only that but filling in gaps and making new points! One example being that by getting rid of Luke’s carers, you get rid of 20 years of bespoke expert knowledge of Luke’s individual needs.


What were the Barrister’s main points though? I presume it was our own points and just plain logic itself in that; if you keep lowering wages people won’t work for so little money. Especially if you’re as qualified and experienced as Luke’s carers of 20 years.  Luke is severely disabled and a human being. If you leave him or anyone alone for a period of time that can be very distressing, especially if you have preexisting health, mental or otherwise, incontinence especially.  The others being in regards to scheduling of activities that any human should be able to do and the cut backs destroying these.


I personally didn’t quite understand what his other points and the finer points of ones I did were, so, I’ve asked other people that were there what they were. Here’s what they had to say [If you or Sveleta know/have time please say otherwise feel free to delete this paragraph! What were Barrister’s points?! Can’t remember!]


The Prosecution was someone I didn’t love, he was literally the archetypal pantomime Villain. Not only was he arguing for privitisation and the firing of loved ones and cuts to public services but primarily his voice and behavior was annoying.  The classic sneering “Nyaaaaa” twirly moustache, pitiful anxious clear cut character arc character in classic films type character whom you could see why they became a villain, you can tell they were bullied at school, small man syndrome type Villain. Really nasally and whiny, the complete polar opposite of our defense, neither calm nor collected or concise: stumbling and bumbling his way here and there, sucking up to the teachers, I mean judges. Not only that but his arguments sucked too, he gave the judges completely the wrong references and argued against those instead! The judges called him out outright saying they were the wrong references.


The crux of his “argument” appeared to be that it’s a privilege to be able to be out the house for longer than 3 hours,  that he doesn’t need carers as he has plenty of friends and family. His luxurious example? One time, Luke went to Bognor Regis with a friend for a couple of days. Yes, Bognor Regis, his equivalent of a Valhalla of human rights gone mad. A land of milk and honey, a Babylon of Sodom and Gomorra level proportions where freedom reigns supreme. Now I can’t remember who interjected, whether that was our defense or the judges who shut this down, but whoever did so with the fact that Luke’s family had saved up for 3 years to go for that  outing, 102 miles, to Bognor flipping Regis.


Whilst arguing that Luke has a plethora of family and friends he kept mentioning his parents’ age when they were less than 10 meters away. Essentially saying them they’d be dead soon and instead of people he’s known for 20 years, have agency workers on minimum wage take over care for their son.


This is the kind of “logic” and “rational” that the legal system cherishes so much that we’re dealing with here. Quibble over pennies for a trip to a seaside town but throw away invaluable human beings.


So you can imagine the outcome of this case, we lost. It feels unnecessary and an understatement to call the outcome ‘disappointing’, I saw one of us in a wheelchair crying her eyes out before the second half even really began but that’s what this is.  There’s that phrase parents use, “I’m not angry, I’m just disappointed”. We are angry but it’s almost a grieving level beyond that where you’re just desolate in your faith for humanity. They could have done so much better.


How judges, in all their insight into legal dramas over the years, can literally make the points for you, only to throw it all away because it’s “the Council’s actions have not acted unlawfully”. That was the outcome, what they’ve done is legal and therefore it’s fine. Just because something’s “not unlawful”/legal doesn’t make it fine. How is stealing legal? How is taking money and people away from a disabled man fine? What’s ridiculous is that, purely on a rational and moral level, this system is meant to represent, and always look to their shining light, rationality and morality, yet they’re so incomprehensibly irrational and immoral in their actions.


You don’t need to pay me an extortionate amount in legal fees and make you wait years for my conclusion to this case.  The ruling was that the lower rates of pay wouldn’t make people leave but they’re on record on email saying so that it definitely would and they will.  It’s legal but it shouldn’t be and not an excuse to steal someone’s money or people they rely on. If he wants time alone or doesn’t want more than x amount of hours alone don’t contradict that for the sake of “independence”. Firstly, he isn’t a child who needs to learn a lesson, he’s a 42 year old adult and moreover, a human being, he knows what he wants, stop presuming. He’s intensely disabled, stop making life more difficult for him than it is already and have some respect and compassion for him. Picture shitting yourself, sitting in it and not physically being able to deal with it for more than two hours. That is not independence, that is the state being inhumane to the highest degree.


It is this Nanny State dictating what is good for us that led people to rebel and vote for Brexit. We definitely shouldn’t have voted Brexit but I think we are tired of the expert ruling and the framework that it’s in. I would argue that it’s down to a lack of common ground and understanding within that frame. Wheelchair frames and access to them as a whole and not understanding that you can’t just Uber one and pick it up in 5 being one such example. What it’s like not being able to be on your own, not being able to fully see or move and sit in your own shit, for more than two hours. Not being paid an extortionate amount of money, money that doesn’t seem to understand  someone like Luke. I noticed a lot of middle class and above accents in that room. I counted one black woman and one potentially disabled person in authority that day. That’s an enormous amount of progress from what we’ve seen but we need more of that please.


We need to stop constantly having old white men being the supreme court rulers of justice.  Stop them swinging their dicks about, woops I mean, “Hammers” sorry, “hammers”. That’s what this is though let’s face it. Boys being boys, men being conditioned men, suppressing any empathy and emotion or kindness for each other because that’s Girl’s stuff for the sake of “rationality” verses “irrationality”. It’s such a treasured concept in masculinity, to be “rational”. Anything that has the hint of heart or compassion for your fellow human being is hit with a hammer and considered “irrational” and thrown aside, boys don’t do that, urgh.


We forget that though in this game of Rational or Not Rational. W forget how we’re all human beings who have to have some heart and look after each other so we don’t kill each other in the microcosmic time we have on this rock floating through space. That’s the heart of democracy is not coldly suppressing love for your fellow man. Learning to get along and not hide your feelings. I bet these men playing these games probably want to say sorry being so silly and give each other a hug for but that’s GAY so they don’t because that’s what GIRLS do so they have to be STRONG and STABLE and RATIONAL so they don’t.


It is a game though, an interesting game where, without getting too weird and Freudian about it, they may subconsciously want to embrace these more societally conditioned traits of “femininity”. These boys put these curly “girly” wigs on, wear big flowing dresses to talk about their feelings and not just physically fight to resolve their differences. But of course they have to have big shouting matches with a phallic object and have rules and drown it all in nonsense terminology to disguise it.


We’re getting there, though. Women, black women crucially, are getting in there. Slowly but surely. One judge seemed to recognise it’s a weird game where human lives are pawns and  made remarks over how difficult this is for the family, to have their lives so ruthlessly torn apart in nasty ways. He also remarked how family should be just that for the most part and have time to be that, family, not Carers looking after a client but have to time to not be and enjoy each other’s company. That’s how our communities used to be, communities where we would all help each other in the village, support from the community and in our current age of Selfie atomised individualised Neo-Liberal Thatcher nonsense we have to come back to that way of being. We all need to look after each other like that.


May I also point out that at the end the judge made a joke about after the nasty prosecution repeating the parent’s age so often, for good measure, he’d tell the room the other judge’s age next time.


This case, especially in light of the UN’S findings of the UK’s disgusting dealings with disabled people isn’t a joke. Someone asked why the press loved court room dramas so much and as I’ve said, it’s a game with clear winners and losers, goodies and baddies that people know and understand. Now we know how much of a con it is, let’s stop playing and start helping people like we used to, before the big wigs started shouting.

Joe Langlois


Disabled man Luke Davey's care cuts appeal dismissed

September 2017


A disabled man who took his legal fight over cuts to his care to the Court of Appeal has had his case dismissed.

Luke Davey, 41, challenged a ruling upholding  Oxfordshire County Council's decision to cut his package by 42%.

Mr Davey, who has quadriplegic cerebral palsy, argued it threatened his well-being and breached the Care Act.

Campaigners said the case could have led to a landmark ruling, but the appeal judge said the council had not acted unlawfully.

Mr Davey, from Burcot, is registered blind and uses a wheelchair, requires help with all of his personal care needs.

'Rethink care'

He had argued the reduction was both unreasonable and unlawful.

In response to the ruling, his mother Jasmine, 76, said: 'We're struggling. We're having to rethink the whole way that Luke is having his care."

Mr Davey was supported by a team of personal assistants for 23 years, relying on a care package costing £1,651 a week.

The council proposed reducing this to £950 a week in June 2015 when the Independent Living Fund (ILF) was closed by the government.

In his written judgement, Lord Justice Bean said: "It is understandable that the claimant, Mr Davey, and other members of his family objected to the updated needs assessment, which has resulted in a substantial reduction in the level of the claimant's personal budget.

"I have great respect for the manner in which the claimant, his family and his team of carers cope with his difficult situation.

"But that is not the same thing as holding that the council's actions have been unlawful.”

'Financial constraints’

A county council spokesman said: "We will continue to work with Mr Davey and his family to ensure he gets the provision of essential services he needs.

"The Court of Appeal has confirmed that the Council's assessment of Mr Davey's care needs and the allocated amount for his personal budget is appropriate and lawful.

"All local authorities who provide adult social care services against a background of financial constraints in the public sector are having to make difficult decisions."