The Tory blueprint: fund a cruel system, not the disabled people it punishes
Frances Ryan courtesy the Guardian
A new report shows a benefits system riddled with failings. But this isn’t a policy gone wrong – it’s one going exactly as planned.
On Wednesday, the work and pensions select committee released its much-
How bad is the situation, exactly? A person with Down’s syndrome asked by an assessor how they “caught” it, according to one submission made to the committee. A woman reporting frequent suicidal thoughts asked why she had not yet killed herself. Another whose assessment said she walked a dog daily, when she can barely walk and does not own a dog. If you’re unsure how far this rot spreads, consider there were so many submissions made by disabled people across the country – 4,000, unprecedented for a select committee – that MPs had to publish a separate report highlighting them.
When I spoke to readers about the reports this week, I heard from a daughter whose terminally ill father was asked by an assessor when he was going to die. A wheelchair user with multiple sclerosis asked how long it would be before she “can walk again”. This week a story emerged of a young woman with a cancer-
And business is certainly the word. As cancer patients and paraplegics have the money they need to eat pulled away, private companies are being paid hundreds of millions of pounds for carrying out “unacceptable” assessments. As the report says: “Large sums of money have been paid to contractors despite quality targets having been universally missed” (all three contractors have failed to meet their key targets on levels of unacceptable reports in any single period). The taxpayer then pays even more in inevitable appeal costs; this week it was reported that the DWP has spent £100m of taxpayers’ money defending the removal of people’s benefits at tribunals in the past two years alone (around two thirds go in the disabled person’s favour).
The report makes worthwhile recommendations for change, such as improving trust through implementing default audio recording of assessments and, in the longer term, providing video recording. It even goes as far as to say that if private companies can’t show they are capable of delivering a decent standard of testing, the DWP should consider whether assessments “are better delivered in-
From their rollout by the coalition to Theresa May’s cabinet today, the very premise of the Conservative’s so-
That’s the most grotesque part of this. When ministers design a social security system based on how much money they can cut, unqualified assessors and bloated appeal bills aren’t a sign of a policy gone wrong – it’s a sign that it’s going exactly as planned.
It’s often said that we get the politicians we deserve. We could say the same for the welfare state they run for us. No matter what the normalisation of the mistreatment of disabled people suggests, it’s entirely possible to create a humane and competent disability benefit system – one that spends public money on supporting people in their time of need and uses medical evidence from our own doctors. This report offers more powerful evidence that we need change. But until we rid ourselves of this rightwing government, so keen to vilify the sick and the poor, we will have a benefits system that harms them.
The right to die is not the same as the right to be killed
by Ilora Finlay courtesy The Times
In 2015 parliament overwhelmingly rejected proposals to license doctors to supply lethal drugs to terminally ill patients — euphemistically called “assisted dying”. The medical profession doesn’t want it either. The BMA and the medical royal colleges are all opposed. The BMA conducted an in-
Claims that legalised assisted dying is without problems overseas ignore the evidence. Oregon’s ostensibly watertight law has been found to have loopholes. It transpires that its criterion of terminal illness could include anyone with a chronic but managed illness that would prove terminal if the patient stopped taking medication. The quality of doctors’ assessments of requests for assisted suicide is not monitored. Coercion cannot be detected. And, with most doctors unwilling to provide assisted suicide, those seeking it are left in the hands of doctors who have no first-
There is much talk of choice at the end of life. If we are seriously ill and want to call it a day, we can ask our doctors to stop treatment. If doctors do that, they continue to have a duty of care for our comfort in dying. With modern specialist palliative care, in which Britain leads the world, that can be achieved for the vast majority of people. If we are worried we might not be able to halt treatment (for example, if we become unconscious), we can set out our wishes in a legally binding advance decision to refuse treatment, or in an advance care plan. There is already a right to die. That is different from a right to be killed.
In her book With the End in Mind, Kathryn Mannix writes about what dying really looks like and what can and should be done. She describes how attentive listening, exploring fears, modern analgesia and symptom control can make our dying comfortable and dignified. There is a world of difference between that and asking a doctor to supply or administer a massive lethal overdose.
Campaigners for assisted dying are resorting to scare tactics. Last December a campaigner wrote that terminally ill people in Britain have a stark choice between going to Switzerland or having an agonising death here. Such scaremongering may make for sensational political campaigning, but it distorts the truth and preys on the vulnerable.
How we manage death in an age of increasing longevity and loneliness is a complex question. It calls for careful and sensitive thinking rather than quick-
Baroness Finlay is professor of palliative medicine and a cross-
Disabled people reveal dark realities of Government’s disability benefit assessment system courtesy Independent
Personal independent payment (PIP) assessments are having a damaging effect on some disabled people in Britain
Britain’s disability welfare system has come under some scrutiny over the past year following the introduction of Personal Independence Payment (PIP).
PIP began in 2013 to replace the Disability Living Allowance (DLA). It brought in a new face-
While some claimants do report a positive experience, many have found the new process stressful and in some cases unfair, leaving them without support to do things independently.
In November a court found some disabled people were not being offered enough financial support through the new system, prompting the Government to admit wrongdoing and announce new guidelines which would see certain PIP claimants receive higher benefit rates.
A month later it emerged that the system was wrongly denying disabled people financial support at a higher rate than ever, with decisions not to award it overturned at 68 per cent of appeal hearings.
Now The Independent has revealed the private firms contracted by the Government to carry out PIP assessments are being paid a record amount, with the figure having soared by 19 per cent in a year.
Behind it all are people who have undergone the assessments themselves. Here some of them talk of what they experienced.
Andy Knight, 26, Wymondham, Norfolk
My whole life had been turned upside down when at the age of 25 I found out I’d been diagnosed with multiple sclerosis, a long-
I walked into the assessment with a walking stick. I was asked to do some physical tests which didn’t seem to make much sense. I was asked to stand straight on my right leg, even though the assessor could see this wasn’t actually possible. I was asked how far I could walk. I said that depends on whether I’m having a good or bad day. But she could only take one answer, she seemed to only take into account my good days.
A month later I got a letter saying I didn’t qualify for the mobility component, and only the lower rate for care. I was disgusted when I saw the report – they clearly saw me struggle to walk at the assessment, yet they didn’t believe I had mobility problems.
Both my GP and consultant wrote letters to explain my condition and I submitted a Mandatory Reconsideration to make the Department of Work and Pensions look at my case again.
I found out a couple of months later that the DWP had changed their mind to give me the higher rate for mobility and standard rate care.
The whole process took seven months and it was an awful time as I didn’t have any income whatsoever. I try to avoid stress as much as I can because it makes my symptoms worse, but this process caused me a lot of grief.
The system clearly isn’t working when you have to fight against them when you ask for help. I’ve had to fight to be able to live, to have some sort of independence.
Robert Price, 47, Hartlepool
I broke my back and neck while with the army. I have had mobility problems since that time, though I have to admit I am now about as immobile as I could be. I’ve tried to retrain and get qualifications, but I now simply find myself in extreme ill health.
I’ve been housebound, and pretty much bed-
Last November I underwent a PIP assessment in my home. They were aware I had been on disability living allowance for 25 years for an accepted disability due to breaking my back and neck.
Attempted suicides by disability benefit claimants more than double
I explained my situation as best I could. The registered learning disability nurse kept me talking for nearly an hour, and then spent about two minutes on the physical assessment.
During that assessment, she did not expect me to stand because she knew I couldn’t, she did not inspect my legs or indeed anything other than the grip in my hands. This she did by means of a very cursory examination which must have been fraudulent in its analysis.
I then received notification from the DWP that I would be awarded 0 points for mobility, because based on the assessments by the nurse, I was able to walk 50 metres unaided.
So I went from having DLA for a quarter of a century, to being found fully mobile, by the assessment of a nurse who knew I could not stand up when she was examining me. This cannot be honest in any way.
As a young man I would have served this country and would have risked my life for it, that’s what it means to join a volunteer army. I now see a country I am ashamed of, which treats the most vulnerable as though they were subhuman.
There is genuine sadness on my part that these same people, who care not for their compatriots, often hide behind this nations flag whilst doing so.
Aliie Harpham, 26, Dorset
I woke up one day and couldn’t see anything. I felt completely paralysed, like someone had just pressed the “off” button on my body. I had to lie in bed for a week. I thought I was dying.
I had been told the assessment would take an hour but mine lasted 15 minutes. I wasn’t asked any questions about how my disability affects me. When I Googled the set of questions afterwards, I found out they are the ones used to diagnose Alzheimer’s. I wasn’t asked to perform any physical tests.
I’ve told myself the assessor had no idea what MS is or what it is to live with it, because the thought of someone having a full understanding of this condition and still behaving the way she did is too cold and painful to think about.
Someone I’d never met before decided that although I have a lifelong disability, I’m not “disabled enough” to receive any help, even though I wear a fitted orthotic piece every day for my foot drop. I also have permanent sensory issues. They didn’t pick up any of my weakness of movement issues.
It’s enough being told that this is the rest of your life and it’s not going to get better. But then you have to fight tooth and nail to get any extra help.
Thirty Day Limit For Benefit Appeals Extended As It’s Ruled Illegal
FEBRUARY 2, 2018
FOR YOUR ATTENTION BLOGGIES. Share it let others know their rights.
The problem with strict time limits for people with health conditions should be obvious. They may have issues that do not always allow them to appeal quickly. And this is something the Upper Tribunal judges thought should be “obvious”.
They ruled that: “We have concluded that as a matter of statutory interpretation a claimant in such circumstances has a statutory right of appeal to the first-
Basically, if you are disabled and want to appeal the 30 day response time has now been extended.
Unsure of how this will be backdated or how long a claimant will have to appeal.
But this is dismantling their POLICIES/VISIONS ( IDS), which they thought could overrule The LAW.
Universal credit system faces landmark legal challenge
A terminally ill man has won the right to launch a landmark legal challenge to the government over its introduction of universal credit after the controversial new benefits system left him significantly worse off.
The outcome could have consequences for thousands of other disabled people who claim that they are now experiencing financial hardship as a result of having had their benefits restricted under universal credit.
“I am proceeding with the judicial review for my own personal financial situation during this very difficult time of illness, but also because it is quite wrong of the government to remove by stealth and without prior warning on a transition into universal credit a much-
TP became terminally ill in 2016 and received the severe disability premium (SDP) and enhanced disability premium (EDP), which were set up to meet the needs of severely disabled people living alone without carers.
Following the introduction of universal credit (UC), both benefits for TP were removed, despite a government pledge that no one with a severe disability would be financially worse off. According to the charity Disability Rights UK, the abolition of SDP will cost disabled adults with no one to care for them, or with only a young carer, about £62.45 per week, or £3,247.40 a year. The abolition of EDP will cost them £15.90 per week or £826.80 a year.
Following his diagnosis, TP’s doctors recommended that he move to London to receive treatment. His return to the capital, a universal credit full-
Tessa Gregory from the law firm Leigh Day, which is representing TP, said David Gauke, the former work and pensions secretary, had made repeated commitments to protect existing benefit levels with “top-
A DWP spokeswoman said that it was unable to comment on the specifics of the case while the review was under way. She added: “We are committed to supporting people into work while making sure the right care is in place for those that cannot. Unlike the previous system, universal credit is more targeted and support is focused on those who need it most. Transitional protection is also available for those people who move on to UC from other benefits, provided their circumstances stay the same.”
Government accepts most of the PIP review recommendations in full
08 January 2018 courtesy DRUK
The Department for Work and Pensions appointed Paul Gray CB to undertake the two reviews Personal Independence Payment (PIP) assessment. This is his second review.
The Review’s recommendations were that:
1. The Department simplify and better co-
2. The Department makes clear that the responsibility to provide Further Evidence lies primarily with the claimant and that they should not assume the Department will contact health care professionals.
3. The Department ensures that evidence of carers is given sufficient weight in the assessment.
4. The transparency of decision making is improved with claimants being provided with the assessment report with their decision letter. In the longer term, offer audio recording of the assessment as the default with the option for the claimant to opt out.
5. Assessments should begin with gathering a functional instead of a medical history. Options for confirming the medical history in advance of the assessment should be explored to ensure that the assessment has a more functional focus and there is sufficient time to explore functional impacts in sufficient detail.
6. Health Professionals to be given more time to consider the evidence provided with a claim before the assessment begins.
7. Assessment Providers and the Department to work to implement a system where evidence is followed up after the assessment where useful evidence has been identified and may offer further relevant insight. Particular priority should be given to information that is likely to be functional in nature.
8. The write up of reports to be completed directly after the assessment except in specified circumstances.
9. Audit, assurance and quality improvement activity should be focused on the quality of the assessment as well as the quality of the report. This should be supported by the audio recording of assessments and increased direct observations of assessments.
10. The Department to broaden the audit process to include the initial review stage and also explore how to include Case Manager activity in an end-
11. The Department and Assessment Providers introduce consistency checks across a variety of metrics, including “deep dives” on cases with similar outcomes, as part of the regular management of the service.
12. The Department should undertake and publish further research on the operation of PIP, in particular covering the consistency of outcomes, the effectiveness of Award Reviews and the effectiveness of the Mandatory Reconsideration process.
13. The Department re-
14. In the longer term, the Department should develop a joined up digital journey which includes an online facility for both claimants and external Health Professionals to upload documentary evidence securely.
A new website has been created as a comprehensive guide to the UK Benefits system.
It is free to use and free from advertising.
Our benefits system has become a racket for cheating poor people
Aditya Chakrabortty courtesy Guardian
When Moira gets scared, she cuts herself. “It’s my way of taking control.” Right now she’s very scared. In a few days she faces a tribunal that will judge whether she is entitled to her disability benefit. She has been through forms and examinations and the officials who tell her one thing and those who tell her another, and she is nearly broken. In a low-
Steph Pike lets Moira talk, before telling her, “stay focused”. After years as a welfare rights adviser, Pike knows what tribunals want: short, direct answers shorn of humiliation and pain. Now in her late 40s, Moira was raised in care, went to jail and has been repeatedly cheated of her benefits. Part of her life story is of being let down and punished by authority – but Pike needs her to set all that aside. “Bear with me,” Pike keeps saying. “This is important.”
Such meetings are normally confidential, but for three days over two weeks I had exclusive access to Pike in her work for the Child Poverty Action Group charity. I saw her advise others who appeared to have been wronged by state officials – and I accompanied Moira to that tribunal.
That our benefits system is broken is no longer up for debate. Ministers are told universal credit is a fiasco and MPs weep over starving families in one of the richest societies in human history. Even rightwing tabloids run grim updates on how men with terminal cancer are declared fit to work just weeks before they die.
Such cases are described as shameful. As failures. They are lined up like so many one-
That’s Moira’s experience, too. Her trouble started when she found herself feeling steadily worse – and so did as she was told and rang the Department for Work and Pensions. Her recent back operation hadn’t worked, the arthritis in her spine, hips and knees was getting worse and the heavy-
I have seen a copy of the report by the nurse employed by a private firm, which notes that Moira “has a bath mostly every day”. Wrong, she tells Pike. Her depression means that she needs to be “motivated” to bathe – or else “I’ll run a bath and it’ll sit there for four days.” More tears, this time of shame.
The nurse says she has three meals a day. “Lying ass,” shouts Moira, who says she doesn’t eat more than once a day. The report claims: “She is able to get on and off the toilet without difficulty.” Moira’s own form says, “I have great difficulty getting up off the toilet as the joint in my right hip gets stuck.”
The nurse concludes: “Since her last assessment two years ago, this lady’s restrictions have considerably improved.” Yet Moira’s own GP has written to the tribunal, “I would feel that her general overall condition has got worse.” None of these contradictions surprises Pike. Moira, she says, is simply the latest victim of “a lack of care and a culture of money-
Moira never went looking for welfare advice; she was just starving. In February her GP practice referred her to a food bank. At east London’s First Love Foundation, you walk into a church hall, a volunteer sets aside two bags of food for you and then, by a sign that reads “the way, the life”, you talk to Pike or one of her CPAG colleagues.
Normally, that hardly ever happens. Welfare advice has almost vanished after years of Conservative cuts to councils and legal aid. Pike started out at a council, until it was forced to cut back its welfare advice service. Nowadays, if you’re disabled or unemployed, you’ll most likely get a few leaflets
“signposting” you to other services, which themselves can’t help much. As for someone to represent you at a hearing, as Pike is for Moira, “It’s a desert out there,” says Alan Markey, head of the National Association of Welfare Rights Advisers. So the people who need welfare advice can’t get it, even while they’re being short-
Just as the government is making the welfare system meaner, blunter and more prone to malfunction, it is also hacking away at any means of redress. This means poor people are bilked out of millions of pounds that are rightfully theirs. One of Pike’s colleagues, who also advises at the food bank, went through his records for the Guardian and calculated that he filed 36 appeals in the past year. Fifteen still await conclusion, but of the rest, 20 out of 21 DWP rulings were overturned after a welfare adviser got involved.
In just one year, Pike and her colleagues won a total of £852,288.84 back from the DWP: benefits wrongly withheld, years of back payments, compensation to cover the debts claimants racked up. And that’s for just one food bank in one pocket of London. Multiply it for the rest of the country, and you realise that this isn’t about a few bad decisions or rotten apples. It is a predatory system. Last May, the DWP was forced to admit that it has a target to refuse 80% of requests for any reconsideration of benefit decisions. Poor and often seriously ill people with legitimate claims to state support have been left to starve by the government, in order to save money that has been recycled into tax cuts for rich people and big businesses. This happened under “compassionate Conservative” David Cameron and continues under Theresa May, who promised to “always act in the interest of ordinary, working-
Moira herself was wrongly denied housing benefit, which led to her landlord almost evicting her. She was put in the wrong universal credit group, which mandated her to look for work. She lost money under a mistakenly imposed benefit cap. Each time, her protests were ignored, Pike had to file an official complaint. Without a representative, Pike believes, “Moira would have been forced to go out and look for a job. She would have been sanctioned. It’s a real possibility that she could have ended up destitute and homeless.”
By the time Moira goes in for her appeal, she has been crying and dry-
It goes well, until the doctor asks about her limited mobility, and Moira makes a passing remark about an elbow getting “dislocated”. The doctor pounces: what does she mean? It seems an obvious slip; she simply means her elbow pops out of its socket, and it has nothing to do with her appeal. Yet the doctor won’t let go.
We’re sent out of the room, as Pike mutters that the elbow has nothing to do with her claim for PIP. On coming back in, the chair announces the hearing has been adjourned while the panel awaits more medical evidence. Moira’s case will drag on well into 2018. The chair drones calmly on – but Moira cries out “I’ve got to go” and grabs her crutches. Once outside the room, she starts vomiting and bawling, “These people have ruled my life since the day I was born.” She bangs on doors, as if giving back some of the violence that has been done to her.
Five guards appear, but are persuaded that a woman on crutches poses little security threat. Finally, Pike gets her into a taxi. She goes home, crying, humiliated and with just over £140 a week to live on through Christmas and New Year. Just before leaving, she says in a low, flat voice: “I’m going to cut so good tonight.”
*Moira’s name has been changed to protect her identity.
Big legal victory for Disabled people: the DWP’s changes to PIP regulations were declared unlawful today
courtesy dpac 21st Dec 201721
On the 21st of December, the High Court judge Mr Justice Mostyn allowed the claim in the case of RF v Secretary of State for Work and Pensions. The case was brought by a Disabled person with mental health support needs to challenge the changes the government made to Personal Independence Payment Regulations in March 2017[i].
These changes were urgently introduced to reverse the impact of the Upper Tribunal Judgement in the case of MH v Secretary of State for Work and Pensions (PIP):  UKUT 531[ii]
These changes prevent thousands of people who cannot plan and follow a journey due to psychological distress from qualifying for higher rates of this benefit or qualifying at all[iii].
The Public Law Project, who represented RF argued in court that the changes are discriminatory and unlawful, because they go against original policy intent of PIP[iv].
The court said today that the regulations were discriminatory, and they have been quashed but it won’t take affect until the court of appeal decides the government can appeal
Tracey Lazard, CEO of Inclusion London said:
“This is a hugely important case. It challenges the discriminatory way the government treats Disabled people with mental health support needs. The outcome can make a difference to thousands upon thousands of Disabled people. We have always believed that these changes are discriminatory and unfair and should have never been introduced. It is incomprehensible that the government pledges more support for people with mental health support needs and at the same time introduces, through the back door regulation changes that prevent many thousands of Disabled people with mental health support needs from qualifying for this essential benefit.
The government’s actions to change PIP regulations and single out people who cannot travel because of psychological distress are a brutal attack on the rights of Disabled people. Today’s case illustrates the lack of concern for Disabled people and the government’s inability to listen to us and engage with us. It is extremely worrying that many of us feel the legal action is the only way for us to get heard”.
Linda Burnip, co-
“We are pleased with the judgement today. It will make a huge difference for thousands of Disabled people with mental health support needs.
We have to remember that this challenge is taken in a context when the UN Committee on the Rights of Persons with Disabilities found systematic and grave violations of Disabled people’s rights a year ago. And again in August it called the situation Disabled people are in a ‘human catastrophe’. The UN specifically called on the Government to repeal changes to PIP regulations because they breach our human rights under the Convention”.
[i] Personal Independence Payment is a new benefit which replaced Disability Living Allowance for Disabled working-
[iii] The Government’s own Equality Impact Assessment stated that changes will prevent 164000 people from current PIP caseload from qualifying, 143.000 of those people will be prevented from qualifying at all. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/593392/pip-
Inclusion London supported the case from the start and provided a witness statement.
[iv] Statements made by the Government prior to 2014 as well as the Government’s 2012 Response to the consultation on PIP clearly express the intention of PIP to assess need rather than make decisions on the basis of impairment labels.
Statement from PLP
Statutory Instrument Quashed by the High Court
2017 Personal Independence Payment Regulations are Discriminatory
The High Court has found that part of the rules governing Personal Independence Payments are unlawfully discriminatory against people with mental health impairments. The Public Law Project’s client, RF, won on all three grounds of her challenge (RF v Secretary of State for Work and Pensions). The judge quashed the 2017 Personal Independence Payment (PIP) Regulations because they discriminate against those with disabilities in breach of Human Rights Act 1998 obligations. Because they were discriminatory, the judge also found that the Secretary of State did not have lawful power to make the Regulations (i.e. they were “ultra vires”), and that he should have consulted before making them, because they went against the very purpose of what PIP regime sought to achieve.
The judge heard that the Regulations were laid by negative resolution in February 2017, received relatively little parliamentary attention, and were rushed through the parliamentary process by the Secretary of State without prior reference to checks by relevant committees. Contrary to the Secretary of State’s defence, the judge found that the decision to introduce the Regulations was ‘manifestly without reasonable foundation’ and commented that the wish to save money could not justify such an unreasonable measure.
During the course of the trial, the Secretary of State accepted that the testing carried out for PIP had not looked at whether the basis for treating those with psychological distress differently was sound or not, and the testing actually done was limited.
RF’s claim was supported by The National Autistic Society, Inclusion London, Revolving Doors and Disability Rights UK. All of those organisations gave statements to the court that the Regulations were unfair and that the intention to treat those with psychological distress differently had not been made clear in the early PIP consultation stages. The claim was also supported by two interveners: Mind and the Equality and Human Rights Commission (EHRC). The EHRC made written submissions to the Court on the ongoing and persistent breaches by the UK Government of its obligations under UN Convention on Rights of Persons with Disabilities arising from its austerity measures. The Judge found that this inconsistency with the UN Convention supported his finding that the measure had no objective justification.
RF commented: “This judgment is important for a community of people with mental health problems fighting for their lives against discrimination.”
Note to Editors:
The case was previously known as SM and RF, but is now known as RF v Secretary of State for Department of Work and Pensions. There is an anonymity order in place protecting SM and RF.
The Government intends to appeal the decision. The Regulations will not be quashed until the Court of Appeal decides whether or not the appeal should proceed. RF is anticipating a decision on this in early 2018.
A digital version of the decision will be available shortly here: https://www.judiciary.gov.uk/judgments/.
Further enquiries can be made to firstname.lastname@example.org
Advice for Professionals re-
courtesy DPAC 11th Dec 2017
This guide has been produced by Winvisible with support from others. If your GP or support worker etc don’t know what to do this information should be passed onto them.
Benefit assessments – exemption to protect ‘vulnerable’ patients
There is a great deal of evidence about the profound distress which face-
Therefore, it is vital that professionals know about the benefit system regulations on exemption from the face-
They can quote these to protect vulnerable patients from harmful distress and deterioration, and/or enable them to stay out of hospital. Professionals who can state their opinion include: GP, care co-
It is important to recommend exemption from the face-
Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) are different benefits with different reasons for exemption:
ESA is an out-
PIP is widely claimed by both unwaged and waged people for daily living/care and mobility needs, and is not part of UC.
Companies hold DWP contracts to open mail, scan and distribute it and to carry out assessments, but confidentiality is used to exclude evidence. If a support letter marked “Confidential” goes to the assessor company, the DWP says under confidentiality, it won’t then be disclosed to a DWP Case Manager (PIP Assessment Guide Part One, 1.4.13). As proper consideration often depends on DWP review, don’t mark your report confidential.
Under “Exceptional Circumstances”, you can say that there would be substantial risk to the patient’s health if they were put under work conditions for benefit, so they should be exempted from these and the exam. This regulation means the person is already accepted as satisfying the test for ESA (limited capability for work) so doesn’t have to be seen. Substantial risk to health can be mental health, or physical health e.g. risk of heart
attack from stress. Risk to mental health covers not only suicide risk, but also sudden deterioration in mental state: PTSD flashbacks, panic attacks, hearing voices, or similar.
Substantial risk regulations: https://wcainfo.net/issues/substantial-
Regulation 25 (2013) (4)
(4) In this regulation ―medical evidence‖ means—
(a) evidence from a health care professional approved by the Secretary of State; and
(b) evidence (if any) from any health care professional or a hospital or similar institution, or such part of such evidence as constitutes the most reliable evidence available in the circumstances.
PIP DWP guidance states that assessors should determine if they can assess the claim from the paper evidence they already have, or if they should get further evidence from professionals, before proceeding to arrange a face-
1.5.4 “Cases that should not require a face-
The medical evidence sent on paper has to be “robust” to enable the test for benefit to be met, and should include comments about how functioning is affected. WinVisible won exemption from the PIP exam for a rape survivor who felt suicidal and was at risk of flashbacks, based on “consultation may be stressful to the claimant”. The assessor rang the woman’s GP for his opinion after his letter was sent in. She was granted full rates for both daily living and mobility.
Where should support letters be directed?
Assessments are carried out by multinational company Maximus (under the name Health Assessment Advisory Service) on behalf of the DWP.
• If your patient is filling in the ESA50 form, attach your support letter to the form and make sure it is listed on the form.
• If your patient can’t cope with the form, or if an interview date has already been sent out, fax it headed FME (Further Medical Evidence) to HAAS London central fax: 0208 795 8647. This is the procedure recommended by HAAS call centre staff. It should have the claimant’s name and NI No. at the top of each numbered page.
• If your patient has an appointment date and HAAS are refusing to postpone this, or are still requiring her to attend despite your request for exemption, email the same correspondence with a cover note raising your complaint to the Centre for Health and Disability Assessments (Maximus head office). Ask them to put the appointment on hold pending the decision on exemption: email: customer-
Assessments are carried out by Atos (or in some geographical areas by Capita). To send in your medical evidence requesting exemption, you can:
Email Atos pip-
Write to the DWP’s Disability and Carers Service, address is on the patient’s PIP letter. And/or email them at email@example.com
If you are not sure where to send it, call the PIP helpline on 03458 503 322.
Getting support from MPs’ caseworkers
Ask if your patient is ready to contact their MP and ask for support for their exemption and paper-
Assessor companies have staff specifically for MPs’ enquiries. Ms A wrote to us: “I just wanted to let you know, it is with a happy heart I read the opened letter from the DWP this afternoon with my PIP results. I am most grateful for the advice that it is OK to ask my psychiatrist specifically for a paper based assessment. I know not everyone is like this and that particularly with the disabled people’s movement, a lot of work and effort goes into asserting good self-
Compiled by WinVisible (women with visible and invisible disabilities)
with warm thanks to: Diane Frazer, psychotherapist; Dr Jay Watts, clinical psychologist;
Marcin Brajta, Hackney Community Law Centre
Crossroads Women’s Centre
25 Wolsey Mews, London NW5 2DX
Tel: 020 7482 2496
The Need to Fight Institutionalisation by Simone Aspis
courtesy DPAC 15th December 2017
Closure of the independent living fund and the negative impacts of funding shortfall for maintaining individuals’ care packages has been the centre of disabled peoples independent living campaigns since 2012. Whilst cuts to state-
Let’s not be under any illusion, whilst the numbers of disabled people being detained under the Mental Health Act (MHA) has reduced from 3500 to 2150 between 2011 to 2017, the trend for young people is going the other way: in 2011 young people made up 7.6% of the total of disabled people detained under the MHA but by 2017 this had risen to 13%. Many of these are people with learning difficulties or autism who are admitted for short-
No, this is no longer austerity, it’s now ideological. The Government does not believe that disabled people have a place in society and have developed polices that will turn us back to the era of Victorian asylums. Let’s not kid ourselves – these places are dehumanising and brutal as highlighted by practices exposed by BBC Panorama’s under-
The psychiatric regime is rooted within the individualised and medical model of disability/mental disorder where its focus is on fixing, mending and curing the disabled person. Anti-
Whilst working as an advocate for ATU in patients with learning difficulties and autism wanting to get out of these institutions, I am increasingly finding that the Independent Living movement’s priorities are not the radical solutions needed if we are going to advocate for all disabled people rights to independent living, not only those with capacity. We are witnessing a resurgence of institutions for people with learning difficulties and autism – not a week goes by and there is a spanking new facility opening up to lock them up and throw away the key.
We can talk about all the cuts we like to independent living provision and dream about alternative models of care all we want, however this means little if we do not speak out against the millions of pounds being spent on creeping institutionalisation of disabled people. There are some cuts that we should all be advocating for, ones that prevent us from having a full life, on par with our non-
Disabled people whose capacity is not being questioned by the state cannot be complacent either – with savage cuts to care packages, disabled people are being institutionalised within their own homes or within residential and nursing homes. And as such institutionalisation is on the way back for all disabled people.
The UNCRPD committee review of the United Kingdom’s (UK) progress in implementing the UN Convention on the Rights of Persons with Disabilities observations and recommendations included the tackling of increased state-
We need to take the lead and act now – change our focus of our campaign work to a big NO to institutionalisation and their oppressive practices together with highlighting how such places have and will continue to violate disabled people’s human rights as set out in the UN Convention Rights for Persons with Disabilities articles. We need to be campaigning against the setting up and continuation of these institutions and the legislation that gives the state power to force disabled people out of their own homes and communities alongside full implementation of the UNCRPD underpinned by the 12 pillars of independent living. Alongside a plan to phrase out ATUs, we need to be strongly advocating for our right to be provided with the support and services (including mental health ones) we need to live fulfilled lives.
By Simone Aspis @SFActive (Changing Perspectives and Free Our People Now Advocate)
I am a disabled person who is acting as an advocate for detained in-
Switch to universal credit will hit lone disabled people
courtesy Guardian Letters
With universal credit in the headlines (Report, 24 October), with the extended rollout and the many issues this will cause recipients, I have sadly not seen much in any news coverage of late about how this benefit will impact on a specific group in society, of which I count myself.
As a severely disabled person who lives alone, I’m currently in receipt of employment support allowance, with the added severe disability premiums that apply because of that. However, at some point, when I am switched over to universal credit, I stand to lose over £2,000 a year because, unlike ESA, universal credit has no single-
The last time this very serious issue was covered in any detail was back in 2012 when Tanni Grey-
The government and the DWP have attempted to nullify this concern by pointing out that there will be transitional payments to “protect” those being switched from ESA to UC. But, as always, the problem with this approach is that it effectively freezes the recipient’s income over the period of however long it takes for the transitional payment to be eroded away by increases in benefit rates. Other claimants may receive 1% a year, while over the perhaps many years it takes to erode that £2,000-
Some in government also attempted to point out that the loss of the severe disability premium for those living alone will be compensated for by personal independence payments. Except, of course, that many disabled people currently in receipt of ESA who face being switched over to UC are already in receipt of PIP (or its previous form, DLA), so in truth that’s no compensation at all.
So, for me and many other severely disabled people who live alone, the thought of being transitioned over from ESA to UC in the near future, with the hefty cut in income that will result, is a truly worrying one. It is a real problem that, since Tanni Grey-
Peacehaven, East Sussex
Sarah Graham – Freelance Journalist
Looking for young disabled people
Sarah wants to hear from disabled young adults (20-
Perhaps you’d need certain adaptations that housing providers and private landlords aren’t prepared to make, or your local authority doesn’t have enough accessible housing to meet the demand. You might even be considering buying your own place, and paying for the adaptations yourself, but that’s just not affordable right now. Whatever your situation, if you’re disabled and stuck living with mum and dad in your 20s, I’d love to hear about your experiences of trying to fly the nest.
Please email or message me if you can help – contact@sarah-
Why DPAC has concerns about a neo-
Statement for endorsement: We have drawn up the following statement on basic income (BI). It makes the case that, progressive hopes to the contrary notwithstanding, BI is being developed as a measure of neoliberal attack that should be opposed. We invite progressive organizations and individuals who hold positions in agencies and academic institutions, who agree with our arguments, to sign onto the statement. We hope that it will raise a voice of opposition and help develop information sharing and forms of co-
Endorsements and other responses can be directed to us at firstname.lastname@example.org.
The Neoliberal Danger of Basic Income
We, the undersigned, are convinced that the emerging model of basic income, reflected in pilot projects and other initiatives in a number of countries and jurisdictions, is one that would intensify the neoliberal agenda. The hope that there is any realistic chance of ensuring a truly adequate, universal payment, that isn’t financed by undermining other vital elements of social provision, is misplaced in our view.
We are far from wanting to suggest that existing systems of income support are anywhere close to adequate. They provide precarious sub poverty income under conditions that are marked by intrusive regulations and forms of moral policing. Moreover, decades of neoliberal austerity have made these systems considerably worse.
However wretched and inadequate present systems may be, the assumption that basic income must or even could be an improvement on the status quo has to be tested by considering a number of factors. Historically, income support has been provided because those in political power concluded that outright abandonment of those not in the workforce would create unacceptably high levels of unrest and social dislocation. In the far from dead tradition of the English Poor Laws, income support has been provided at levels that were low enough to maintain a supply of the worst paid workers, in forms that were as punitive and degrading as possible. Again, the neoliberal years have seen these features intensified in what we must concede has been a highly effective drive to create a climate of desperation and a plentiful supply of low paid and precarious workers.
If austerity driven governments and institutions of global capitalism are today looking favourably at basic income, it’s not because they want to move towards greater equality, reverse the neoliberal impact and enhance workers’ bargaining power. They realize that a regressive model of basic income can be put in place that provides an inadequate, means tested payment to the poorest people outside of the workforce but that is primarily directed to the lowest paid workers. This would be, in effect, a subsidy to employers, paid for out of the tax revenues and it would be financed by cuts to broader public services. Such a model would lend itself to disregarding the particular needs of disabled people and, as a “citizen’s income,” could readily be denied to many immigrants, especially those left undocumented. Under such a system, you would shop through the rubble of the social infrastructure with your meagre basic income. The kind of pilot projects and other initiatives that are emerging offer severe warnings in this regard (we include some links that provide information on several of these)*.
However, some suggest that while regressive models could be developed and may pose a danger, a progressive and even “emancipatory” form of basic income is possible and realistic as a goal. Often, this is linked to the idea of preparing for a “workless future” in which vast numbers of technologically displaced workers can be provided for. The notion is that a universal payment would be provided unconditionally and that it would be adequate enough so that paid work, if it were an option, would be a matter of choice rather than necessity. While there are a few who suggest this could be won through large scale social action, advocates for a progressive basic income more often seem to assume that capitalist support and acceptance by the state can be won by way of a vigorous lobbying effort.
In our view, a truly adequate and redistributive, let aside transformative, basic income is not possible within the confines of the current economic system. Firstly, the present balance of forces in society, after decades of neoliberalism, does not lend itself to the conclusion that a sweeping measure of social reform, that would reverse this whole agenda, is immediately likely. Beyond this, however, an income support system that removed economic coercion in a way that progressive basic income advocates suggest, would be more than turning back the neoliberal tide. It would actually mean that the state was providing the working class with an unlimited strike fund. It would undermine the very basis for the capitalist job market. It would constitute social transformation, a revolutionary change that is, to say the least, beyond the capacity of any possible social policy enactment.
If basic income as emancipation is not possible, it can only too easily take form as neoliberal intensification. Yet, sadly, progressive advocates end up offering legitimacy to that regressive alternative but placing hopes in musings about basic income by Silicon Valley billionaires or by presenting cynical pilot projects, set up by austerity driven governments, as flawed but important first steps. However much they wish otherwise, the sow’s ear will not become a silk purse.
If faith in a progressive basic income is misplaced, we wish we could offer a shining and readily attainable alternative but this is not possible. We are largely fighting a defensive struggle against a virulent agenda to undermine social provision and increase the rate of exploitation. We can only offer the hard slog of building stronger inclusive movements of social resistance, rejuvenating unions and building a working class political challenge to neoliberalism. As we do this, we must fight for free, expanded and accessible public services. We must win decent wages and workers’ rights. We must struggle for income support systems that are based on adequacy, full entitlement and that are purged of intrusive rules and moral policing. We must infuse all of these movements and struggles with a sense of a very different kind of society from the capitalist one we are fighting. This doesn’t have the glitter of the dream of a progressive basic income but it does accept that reality that there is no social policy way around neoliberalism or a long and hard fight against it. The progressive welcome mat for basic income is a very big mistake.
The Battle To Reverse Legal Aid Cuts Is Stepping Up A Gear
01/12/2017 14:28 GMT
A single mother battling against a dodgy landlord who refuses to tackle the damp affecting her baby’s health. A young family forced to skip meals after a flawed benefits decision. A parent worried they’ll not be able to see their child after a difficult divorce.
Without that legal help the rights that we have -
That’s why the fightback to get the government to reverse its disastrous legal aid reforms is mounting. Those 2013 cuts left hundreds of thousands of people unable to defend their rights in areas as fundamental as housing, employment, immigration and welfare benefits. The number of civil legal aid cases just before the legal aid cuts was 574,000. This has plummeted by three quarters to 147,000 now. In some areas the fall is even greater, with the numbers receiving state funded legal help in welfare benefits cases down 99.5%, the government recently acknowledged.
The slashing of legal aid needs to be seen as part of the same package of cuts that have created such harm in much of our healthcare and education systems. We have a Tory government attacking people’s living standards and then deliberately undermining their ability to defend themselves against those very same attacks.
All this comes at a terrible cost. When access to justice is denied, inequality worsens and the most vulnerable are further excluded from society. As Amnesty International said in its damning 2016 report, Cuts that Hurt, “We are in danger of creating a two-
In continuing unabated with its legal aid policies, this cruel government dismisses not only organisations such as Amnesty International but the warning of then most senior judge, Lord Thomas, who said last year “our justice system has become unaffordable to most”.
Of course, this government loves to whip up the idea of legal aid being about funding the lavish lifestyle of fat-
Worryingly the numbers of such legal aid providers is diminishing. Figures I obtained from the government last week show that the number of not-
Faced with growing evidence of its failed policies, the government has been forced to review its legal aid cuts. The review will conclude by July. All who believe in social justice now have a crucial opportunity to ensure that the Government uses this review to fundamentally repair the damage caused by its legal aid reforms, rather than simply applying a sticking plaster to a broken system.
Spending on legal aid has already fallen by hundreds of millions more than the government’s initial target of £410m. As Conservative MP Bob Neill, the Chair of the Justice Select Committee, recently stated that ‘we have now removed more than the system can take and should rectify the anomalies as soon as possible’’.
That is why I welcome the campaign launched this week by the Law Society calling for legal aid for early advice from a lawyer to be reinstated for housing and family cases. Early legal help is vital advice given prior to any legal representation in a court. It’s the kind of advice that can be obtained at low cost to the state from Law Centres or local lawyers working on low fixed fees, for example £157 for a housing case.
Removing early legal advice is a false economy. When people facing life-
Just as early medical interventions can stop diseases becoming much more serious, so early legal help can address problems before they escalate. A Citizens Advice study estimated that every £1 of legal aid spent on housing advice can potentially save the state £2.34; for debt advice its £2.98; and on employment advice it can be £7.13. As part of its review the government must publish a cost-
Labour is committed to immediately re-
Given the mounting crisis of homelessness and the Universal Credit fiasco, Labour will also be joining with civil society over the coming months to demand that the government uses its review of legal aid to restore early legal help for housing and welfare cases.
If the government is serious about using its legal review to repair the severe damage that its cuts are causing, then proper funding to restore early legal help must be guaranteed.
Richard Burgon is the shadow justice secretary and Labour MP for Leeds East
Marsha de Cordova: The government shouldn’t blame disabled people for its failings
A few weeks ago, Labour’s shadow disabilities minister needed to give a parliamentary response to the government’s proposals for its new work and health programme. But the MP in question, Marsha de Cordova, couldn’t read it. This MP for Battersea in south London is registered blind and needs all documents in large print. But the large-
The irony of this, given that the government paper outlined plans to help disabled people find work, does not escape de Cordova when we meet in parliament later that day. “I have a lot of work to do, don’t I?” she says, of her role both in representing her constituency and highlighting the need for more support for disabled people. The government paper revived a manifesto pledge to get one million more disabled people into work over the next 10 years. But de Cordova points out that the Conservatives have dropped a 2015 pledge to halve the disability employment gap by 2020. She says: “To me it is all empty words, there’s no concrete plan in there. They talk about pilots – but we don’t need any more pilots, we need high-
A week after we meet, chancellor Phillip Hammond suggests that Britain’s poor productivity could partially be due to an increase in disabled people in the workforce. “It’s disgraceful, I can’t describe how incensed I am that he should make such a comment,” de Cordova tells me when we talk days later. “If he doesn’t apologise he should go. Nobody deserves to be in a job where they are blaming disabled people for their own failed austerity policies of the past seven years.”
De Cordova’s typical working environment in parliament highlights some of the issues facing the 360,000 registered blind or partially sighted people in the UK. Large-
Such delays make a concrete difference to the amount of time she has to prepare. “I’m at a disadvantage to my non-
As we stroll through the House of Commons, de Cordova, who works with a sighted assistant, points to other access issues: she can’t read the numbers on meeting room doors, or use the glass carousels at some of the entrances to parliament. She can’t read the menus or till figures in the cafes at Westminster’s Portcullis House, where MPs’ offices are located.
She’s going to need a stopwatch when making parliamentary speeches, because they are timed and she can’t see the clock on the Commons’ chamber wall. Meanwhile the glass-
Labour’s new MP for Battersea wants to make parliament more accessible: “It has to get better, or no one will want to come here,” she says. “I’m having to experience and go through this so anyone who comes behind me doesn’t have to – if that’s what it takes, that’s what I’ll do.”
De Cordova is one of six children raised by a single mother in Bristol. Born with nystagmus, an involuntary movement of the eyes causing severe short-
Of course, issues of equal rights and accessibility go beyond parliament and are pressing at a time when disabled people have been hit hard by this government’s austerity cuts. De Cordova points out that it isn’t just benefits cuts that are having such a negative impact. “One-
De Cordova, who supported Jeremy Corbyn during both Labour’s recent leadership elections, says closing the employment gap for disabled people is one of her priorities: “I want to see employer attitudes changed and shaped,” she says. “I meet disabled people all the time who would love to be working and they’re not – but it is not for want of trying.” Recent research from disability charity Scope found that disabled jobseekers need to apply for 60% more jobs than non-
Transport is a key component – but as de Cordova points out, the Access to Work initiative, which provides means-
One way of doing this, she says, is “to have disabled workers leading a public awareness campaign with employers, or to use the disability forum to explore how we can work with and encourage employers, demystify myths and also make it easier to get on to the Access to Work scheme -
De Cordova worries that Brexit may make things even worse for disabled people, not just because of the funding that currently flows from the EU into accessibility and employment support, but also because many disability rights are currently protected under EU legislation. And de Cordova explains that the EU Accessibility Act would set new accessibility standards across Europe for ticketing and check-
“If we’re not part of this whole directive, we could actually be going backwards, because we won’t be meeting those standards,” she says. “There won’t be a requirement to, unless we introduce our own legislation. And frankly I’m not sure that’s going to happen.”
What is Universal Credit Transitional Protection
What is Universal Credit (UC) transitional protection?
Transitional Protection is an extra ‘transitional’ amount which tops up your Universal Credit award so that you are not worse off when you move onto Universal Credit.
Transitional Protection is only for some people and it is not available to anybody yet.
People who are claiming Universal Credit at the moment are people who have had a change which meant they had to make a new benefit claim. These people are called ‘natural migrants’. Transitional Protection is not available to them.
Transitional Protection will only be available to people who are moved over to Universal Credit even though nothing has happened which makes them start a new benefit claim. These people are called ‘managed migrants’. There will not be any managed migrants until the Universal Credit full digital service is available in all areas. The Department for Work and Pensions (DWP) is planning to start ‘managed migration’ in July 2019.
How much Universal Credit transitional protection you will get will depend on what your income is from the benefits being replaced by Universal Credit.
Your transitional protection amount will top your Universal Credit up so that it matches your previous benefit income to ensure you are not worse off due to the move to Universal Credit.
How long will I get Universal Credit (UC) transitional protection for?
If you can get it, you may receive Universal Credit transitional protection until your Universal Credit award increases to reach the same amount you were receiving from the benefits it replaced, or until your Universal Credit entitlement decreases to nothing, or until you have a significant change of circumstance.
Your Universal Credit entitlement increases
If you have an increase in your Universal Credit entitlement, perhaps due to a fall in income, the birth of a child, or because of an annual increase in the rates for Universal Credit, the increase in your Universal Credit entitlement will be offset by a reduction in your transitional protection amount. This will continue until your transitional protection amount is reduced to nothing.
Jane and Dave currently receive £1100 per month from the benefits to be replaced by Universal Credit but their Universal Credit entitlement is only £1000 per month.
They are part of the managed migration onto Universal Credit so they receive a transitional protection amount of £100 per month to top up their Universal Credit so they are not worse off.
The following April the Universal Credit rates are increased so their Universal Credit entitlement goes up to £1020 per month.
They only need a transitional protection amount of £80 now to top them up to their previous benefit income of £1100 per month.
Although their Universal Credit entitlement has gone up £20, their transitional protection amount is reduced by £20 so they still receive £1100 per month.
They won’t see a rise in their income from Universal Credit until their Universal Credit entitlement becomes more than £1100 per month and their transitional protection amount reduces to nothing.
Your Universal Credit entitlement decreases
If you have a decrease in your Universal Credit entitlement, for example because of an increase in your earnings, your transitional protection amount will not be reduced straight away. This is to make sure that work incentives are protected.
Your transitional amount won’t be reduced until your Universal Credit entitlement falls to £0. Even then you won’t lose all your transitional protection amount at once, it will be removed at the set taper rate, currently 65%. This means you will lose 65p of your transitional protection amount for every £1 you earn.
Significant change of circumstance
If you have a significant change of circumstance which affects your Universal Credit claim you will lose your transitional protection amount immediately.
These significant changes are:
• a partner leaves/joins your household
• your earnings drop beneath the level expected of you in your claimant commitment (for three months in a row)
• your Universal Credit award ends
• you or your partner stop work
National Disabled People’s Summit: my report
Posted on November 8, 2017 by Steve Graby
On Saturday (4th November 2017) I attended the National Disabled People’s Summit in London, organised by the National Education Union, Reclaiming our Futures Alliance (ROFA) and Disabled People Against Cuts (DPAC).
Ellen Clifford followed this by saying that we need spaces for debate, but also to support one another, and acknowledging the fact that many DPOs are currently overwhelmed by demands for support from disabled people in crisis that they have nowhere near the funding or resources available to meet, and the sad loss of many prominent disabled activists in the last year, including Debbie Jolly, Sophie Partridge, Robert Dellar and Eleanor Firman (a list to which I would add Lorraine Gradwell and Keith Armstrong). She pointed out that “getting Corbyn in” is not enough to reverse the damage done by the years of Tory austerity, as even the Labour leadership that many disabled people have pinned all their hopes on do not necessarily fully “get it” on disability issues.
There were then one round of workshops, followed by lunch, a second round of workshops, and feedback from all the workshops at the end. Both of the workshops I went to – Independent Living in the morning and Direct Action in the afternoon – were attended by large numbers of enthusiastic people with a lot to say, but didn’t necessarily come to solid conclusions and were really more about noting down the most important issues identified by the the participants and their ideas for how to deal with them (from what I heard of the feedback at the end, most of the other workshops were probably similar).
In the workshop on Independent Living, the issues raised included:
– cuts to ‘social care’ (including that provided by LAs and by the NHS) everywhere in the UK
– people being evicted from care homes (with no other accessible accommodation to go to)
– people being forced to break the law by paying PAs below minimum wage
– ongoing court cases to try to get councils to keep giving people the funding they had promised to ‘ring-
– people who get health funding for personal assistance having that stopped when they go into hospital
– postcode lotteries regarding care charges
– tightening of eligibility criteria for direct payments by LAs
– difficulty recruiting and retaining good PAs
– CILs and other ULOs in crisis because of lack of funding (and councils “taking back in-
– imposition of ‘pre-
It was recognised that Independent Living is not just about personal assistance, but on the other hand personal assistance is crucial to IL – as one participant said “access to things like workplaces and public transport doesn’t matter if you don’t have the assistance to get out of bed”.
While most people present had physical impairments (and most of those were themselves personal assistance users), a notable exception was Simone Aspis from ALLFIE, who spoke passionately about people with learning difficulties, autism and/or mental health diagnoses being increasingly institutionalised in privately-
The closure of day centres was also controversial, with some people reporting disabled people in their areas campaigning to keep day centres open because the alternative was social isolation in an inaccessible society. The divide between those who are fighting to defend the formal support they are getting and those who are not getting any was also brought up as something we need to be careful is not exploited for “divide and rule” politics.
Several things that we need to keep on the agenda of campaigns for independent living were agreed on, including:
– the need for advocacy for individuals struggling against bureaucratic systems to get what they need
– the need for ‘propaganda’ to get the word out to wider society about what it means to live disabled and unfairly restrictive lives
– the need to get back to the ‘core concepts’ of IL, such as the right to choice and control and the “Seven Needs” established by Derbyshire CIL in the 1990s
– the need for a strong law to give disabled people a right to IL (as opposed to the insufficient existing laws such as the Care Act 2014)
– the need to focus our campaigns on what we are for, rather than merely what we are opposing (e.g. “cuts”)
Many activists present argued forcefully that the system of payments for personal assistance needs to be national rather than local in scale, for fairness and to allow disabled people the freedom to move between different LA areas without risk of losing their support packages – a “national PA service” as one person suggested calling it. One PA spoke saying that PAs need secure jobs and thus have common interests with disabled people who need secure support, raising the question (unanswered in this workshop) of whether PAs should also be involved in working groups on Independent Living.
Mark Harrison from Equal Lives in Norfolk argued that personal assistance needs to be resourced nationally but delivered locally, through DPOs, co-
I wasn’t making such comprehensive notes in the Direct Action workshop, but it was attended by a wide range of veterans of direct actions old and new, including DAN and more recently DPAC, and a few people who were new to direct action but eager to get involved. There was discussion of differences between past and present conditions, including the fact that the disabled community arguably no longer has the resources that it once had to enable sustained direct action campaigns to happen, and of the tensions (not necessarily either/or) between locally and nationally focused action (I argued that, while national actions are important, local action is going to become increasingly necessary as LA-
I must admit that I was pretty overloaded and losing the ability to concentrate when the feedback from the other workshops was given at the end, so I don’t remember much of it, but I do remember (presumably coming from the “social security” workshop) talk about the need to oppose the rollout of Universal Credit, with someone (possibly Paula Peters of DPAC?) saying that the Labour Party’s promise to “pause and fix” UC was not enough, and that instead we need an uncompromising demand to “stop and scrap” it; there was a mention of a planned national day of action on this, but I’m not sure if a date had been set for it.
Overall, I felt like there was a positive atmosphere and good and important discussions happening at the Summit, with some disagreements (inevitable in such a diverse movement) but a general feeling that, despite many barriers, there is hope for the DPM to be revitalised. However, I was left feeling like it wasn’t at all clear what was going to come out of this summit beyond the day itself. I have since heard that a report from the Summit is going to be released, which hopefully will have some pointers for co-
Possible useful new resource
A new resource to find help and advice in your area has been launched today. It’s by LASA, the charity which runs RightsNet and other services. The services it signposts you too are all vetted too.
Just enter your postcode and ask it for the service you need.
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-
“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-
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-
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-
This is happening in Labour-
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-
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-
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-
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-
This local service will be shaped and delivered by user-
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-
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-
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-
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-
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-
Mark Harrison is CEO of Equal Lives, a user-
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-
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-
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-
Beware of thinking that loneliness is some natural byproduct of disability. The strain of ill-
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-
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-
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-
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-
“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.
“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-
Damian Green, the First Secretary of State and minister for the Cabinet Office, said: “An ageing population needs a long-
“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.”
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-
“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-
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-
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-
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-
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-
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)
• Irvin Mitchell Solicitors’ Care Act factsheets and precedent letters http://www.irwinmitchell.com/personal/protecting-
• Carers UK guide to the Care Act 2014 for carers http://www.carersuk.org/help-
• A comprehensive guide about financial assessments and the arrangements for charging for local authority adult social care is available from Age UK
• Age UK Factsheet about eligibility for NHS funded continuing care:
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
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-
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-
We start from the position of seeking to bring people together to debate the priorities for a post-
Papworth Trust (2016) undertook a web-
There is no consensus amongst disabled people on Brexit but the Manifesto shows that there is more consensus on what people want post-
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-
Analysis by Professor Anna Lawson of the legislative and policy background on the range of identified disability-
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-
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.
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-
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-
This suggests both a medium-
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-
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.
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 -
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.
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-
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.
At DR UK’s March 2017 event on Brexit, disabled journalist Christiane Link spoke powerfully of the fears that disabled people from non-
‘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 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-
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-
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-
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-
We also heard of a specific cross-
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-
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-
– providing funding for EU-
– embedding disability rights conditions in the spending of EU funds – e.g. in the current Structural Funds Regulations in which ex-
– mutual recognition schemes – such as the EU Parking Badge scheme and the E111 scheme;
– the generation, dissemination and analysis of disability-
– 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-
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 -
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.
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-
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-
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-
“(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-
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-
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-
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.
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-
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-
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-
In a post-
(c) Introducing an Equality-
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-
“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.”
The Women and Equalities Committee recommended the establishment of a cross-
“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-
79. The Government should develop a cross-
The EU includes ‘human rights clauses’ in international trade agreements it concludes with non-
“A standard human rights clause may comprise an ‘essential elements’ clause referring to basic human rights and democracy standards, and a ‘non-
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 -
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-
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.
Various EU funding streams have also been available for disability-
“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.
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-
– 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-
– Equinet: This is a network of EEA equality bodies which is supported by the EU. It should be noted, that on-
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-
“Throughout the five years you must have been one of the following:
• a job-
• a worker
• a former worker who has kept your worker status
• a student who is self-
• 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-
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.
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.
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-
– 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
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-
The discussion above has identified disabled people’s priorities, mapped out some of the disability-
We have engaged disabled people and DPOs on-
It should also be stressed there will almost certainly be disability-
With these provisos in mind, we present the following Manifesto for disability rights in a post-
Action on Disability
Community Navigator Services
Disability Action Northern Ireland
Disire (new EU citizens’ DPO)
Leicestershire Centre for Integrated Living
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-
Our Manifesto for disability rights in a post-
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 -
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 -
Continued mutual recognition initiatives useful to disabled people -
Giving the UNCRPD heightened status in domestic UK law -
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:
Parliamentarians of all parties and parliamentary Committees with the potential to influence, including the All-
3. Consider who is best placed to influence, for instance:
People and organisations who are already influencing those decision-
Disabled people and allies with links to decision-
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-
Establish a steering group made up of DPOs and disability charities, including EU-
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-
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
It would be vital that the resource is used for co-
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-
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-
Ms Kaur has spinal muscular atrophy, meaning she uses a wheelchair and needs round-
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-
“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-
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-
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-
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-
“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-
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-
“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 email@example.com. 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
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-
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: firstname.lastname@example.org
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
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-
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-
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-
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 -
"Will the prime minister now pause universal credit and fix the problems before pressing ahead with the roll-
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 -
The exchanges came as Labour sought to highlight concerns among Conservative MPs over the roll-
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-
Much of the criticism of the scheme has focused on the six-
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-
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-
‘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-
“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:
• 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-
Dear Personal Assistant
Courtesy The Squeaky Wheelchair -
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-
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-
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-
Government delays decision on funding backdated sleep-
The government has said it will look at the impact of the estimated £400 million cost of paying backdated sleep-
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-
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-
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-
Following the tribunal, the government has waived historic fines for providers found not to have paid staff the minimum wage for sleep-
It also suspended HMRC from enforcing back pay and the minimum wage in the care sector for sleep-
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-
“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-
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-
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-
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.
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-
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-
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.
ESA claimants in the support group and UC claimants with limited capability for work and work-
• 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-
• 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.
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 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.
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.