National Information Gathering Survey

INTRODUCTION – Who we are and why we are doing a survey

“Being the Boss” is a national network of disabled people who employ their own personal assistants (P.A.s)/support workers or carers. Our central role has been to support disabled people who employ their own Personal Assistants by providing peer support and a coherent voice for them in the wider community. The website and Facebook page are for disabled people who employ PAs no matter how they are funded - it is NOT just for disabled people who are receiving Direct Payments or Personal Budgets from the local authority. See: http://beingtheboss.co.uk/

Since 2010 when the Coalition government introduced Austerity measures we have seen many changes in assessment procedures, funding regimes, criteria, the closure of the Independent Living Fund and an overall undermining of Independent Living.  

Given the current climate Being the Boss believe it is essential to establish ourselves 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 existing service/role, we want to build on our experience by making our advocacy role more visible and proactive and extend it to other disabled people facing difficulties with benefits and other areas which impact upon their ability to live independent lives.

To be able to play this advocate role we need to fully understand the national picture on the ground and to establish what are the key issues for those who employ their own personal assistants (P.A.s)/support workers or carers and are currently finding it difficult to live independent lives. To this end we have decided to launch a National Information Gathering Survey and are asking you to participate in it.

We can provide the Survey as a download from our website/Facebook page. Please feel free to be as detailed as you believe to be necessary or simply answer as much or as little as you feel able. Thank you for your time and support.

National Information Gathering Survey


1. Name

2. Where do you live?

3. Are you: a) paid up member of Being the Boss b) non-paying supporter of Being the Boss c) Casual visitor to the Being the Boss website ?

4. Do you have any favoured means of communication? (e.g. email, British Sign Language, etc.) Please state ….

5. Do you employ your own Personal Assistant(s) support workers or carers?  Yes No If No, my current situation is:                                             

6. Are you funded by: a) Local Authority b) NHS c) Other ?

Other being:

7. Do you receive:  a) Direct Payments b) Personal Budgets c) Other ? Other being:

8. Have you had a review of your Care Package/Personal Budget in the last:  3 months    6 months    9 months   12 months

9. Was the review:  a) straight forward b) hard going c) tough

Would you like to explain your answer? ……

  10.  As a result of the review was your Care Package/Personal    

 Budget: a) maintained at same level b) reduced □                     

 c) increased    Would you like to explain your answer? ……

B. The National Situation

1. Do you believe you have witnessed the crisis within Social Care?  Yes No Would you like to explain your answer? ……

2. Have you seen a change in attitude towards you as an employer of your own Personal Assistant(s)/support workers or carers?

Yes No   Would you like to explain your answer? ……

3. As an employer of your own Personal Assistant(s)/support workers or carers do you believe this role is fully understood within:

Social Care       Yes No

NHS                  Yes No

Wider society    Yes No

Would you like to explain your answers? ……

4. Since 2010 do you believe it has become increasingly difficult to recruit your own Personal Assistant(s)/support workers or carers? Yes No

5. If it has become increasingly difficult to recruit what do you see as the main causes?

6. Have changes in policies at a national or local level impacted upon your ability to manage your package or agreement? Yes No

Would you like to explain your answers? ……


7. Since 2010 do you believe Social Care and the NHS have a better understanding of Independent Living or a poorer understanding?

a better understanding

a poorer understanding

8. Cutbacks in Local Authorities’ budgets has resulted in:

Increased difficulty in obtaining support                Yes No

Increased focus on health over social needs        Yes No

         Less attention paid to independent living              Yes No

         Less service user involvement in planning            Yes No

9. Do you see the increased role of the NHS and decreased role of the Local Authority in Social Care as a good or bad thing?

Good Bad

Would you like to explain your answer? ……

10. Would you welcome the idea of having services around Independent

      Living set up as being separate from the NHS and Social Care but

      with pathways for multiple service delivery where necessary?               

      Yes No


     Would you like to explain your answer? ……

C. Being the Boss – Moving Forward

1. Being the Boss should continue to:


Be a national network of disabled people who employ their own personal assistants (P.A.s)/support workers or carers. Yes No

Provide peer support and a coherent voice for them in the wider community. Yes No

Run a Being the Boss website and Facebook page. Yes No

2. Do you have any practical suggestions on how Being the Boss could

    become more effective as a national network?


3. Do you have any practical suggestions on how Being the Boss could

    improve the peer support work it does and/or continue its role as a   

    coherent voice in the wider community?

4. Do you have any practical suggestions on how Being the Boss could

    make the Being the Boss website and Facebook page useful tools for

    you taking into consideration our limited resources?

5. Being the Boss are seeking to develop be more visible and proactive we intend to develop areas of training which would benefit members and supporters of Being the Boss. We will update the website and Facebook when we have training packages ready for delivery.
our work in four distinct yet

    interlocking ways:

    Information and education

    Peer Group Support

    Campaigning on Independent Living  



    Would you welcome Being the Boss developing along these lines?

    Yes No planning to be more visible and proactive we intend to develop areas of training which would benefit members and supporters of Being the Boss. We will update the website and Facebook when we have training packages ready for delivery. be more visible and proactive we intend to develop areas of training which would benefit members and supporters of Being the Boss. We will update the website and Facebook when we have training packages ready for delivery.

     Feel free to comment or ask questions on our future direction.

  6. Would you be interested in having face-to-face meetings?  

      Yes No

  7. Do you have anything to add to your comments?


Does your local authority charge you for care and support? In Control are carrying out a survey on behalf of the Independent Living Strategy Group, chaired by Baroness Jane Campbell. Please have a look and pass it on. Thanks very much


Over the past few years a group of organisations and activists (the Independent Living Strategy group) have been meeting together to think about how to move the independent living agenda forwards.

We want to know about the experiences of people who access support from their local councils and find out how they are charging for care and support and how this effects people who use support.

Troubled council says grant released to help pay for adult social care will have ‘little impact’

Adult social care service at Northamptonshire council 'on the edge of unsafe', warns its director

March 2, 2018 in Adults, Workforce courtesy community care

By Katherine Purvis

Northamptonshire Adult Social Services (NASS) has said the release of £1.7 million from earmarked reserves to help pay for adult social care will have “little impact given the size of our challenge”.

The grant, announced in the Local Government Finance Settlement, will be used to mitigate financial challenges and growth pressures, according to the council’s budget for 2018/19.

The troubled council has been forced to make almost £40 million in budget cuts after admitting “severe” financial challenges” and issuing a section 114 notice on 2 February. The notice, which will continue into the new financial year, banned spending on all services except those that meet its statutory obligations to safeguard vulnerable people.

As yet, the council has not been able to specify what these essential services are, or where the £220 million adult social care budget will be spent.

“Nobody’s issued a section notice on this scale and to this extent before, so nobody really knows what it means to be only essential,” Penny Smith, branch secretary of Unison Northamptonshire told Community Care. “It’s such unknown territory and I don’t think we’ll have a clearer picture until the ‘best value’ inspector releases his report [due on 16 March]. Everyone’s waiting on that.”

Despite budget overspends in 2017/18 and 2016/2017, Anna Earnshaw, the council’s director of adult social care, warned on Tuesday that the service was “severely underfunded” and on the “edge of being unsafe” with 2,000 unassigned cases.

The council explained that while adult social care has the largest expenditure of all Northampton’s services, it is one of the lowest funded of any county council and has one of the lowest staff bases. Meanwhile, its over 65’s population is growing faster than any other county and it expects the number to rise by 28% by 2024.

In its 2018/19 business plan, Northamptonshire Adult Social Services (NASS) proposed to bring Olympus Care – the council’s adult social care limited company – and First for Wellbeing – a holistic wellbeing social enterprise set up by the council, Northamptonshire Healthcare NHS Foundation Trust and the University of Northampton – back in house to save money and simplify the delivery model.

“We cannot continue to meet rising demand and the costs of care created by these conditions within our existing budgets. There is no short term fix so we need to make sustained long term change where we meet our duties, protect the most vulnerable and deliver better outcomes but all within our limited resources,” the newly-created Adults, Communities and Wellbeing Directorate said in its plan.

To balance the budget, the council has raised council tax by 5.98% – the highest increase possible without a referendum and which includes the 3% adult social care precept. It has also announced the removal of all bus subsidies from mid-July, leading to concerns from the public and Martin Griffiths, Conservative councillor for Irchester, that older residents would be cut off.

“I believe it’s time to apologise to the elderly people in our community who will be isolated,” he said at a full council meeting on Wednesday. “… It’s time to apologise for the lack of foresight.”

In addition, a proposed 2% pay rise for all staff has been abandoned, prompting fears that more social workers will leave the authority.

“They won’t keep staff in any department if they don’t pay people properly. The county shares borders with seven others, so people walk with their feet,” said Smith.

Is this truly Britain – a land that spies on sick and poor people?

courtesy The Guardian by Francis Ryan 1st February 2018

The demonisation of benefit claimants affects us all. We should help disabled people – instead we wrongly accuse them

David’s world was torn apart one morning by an envelope on his doormat. The letter was from the Department for Work and Pensions, and its wording was cryptic: “We need to speak to you about your benefit amount.” But thanks to his years of volunteering as a welfare rights adviser, he was all too aware of what it could mean: he was being investigated for benefit fraud.

David needs his disability benefits. As well as having severe depression and anxiety, he has multiple physical health problems: bowel and heart disease, and a prolapsed disc in his spine. Heavy duty painkillers barely take the edge off his arthritis. Still, last summer he was summoned to the job centre for a compliance interview. David was informed that he’d been reported twice by members of the public for potential benefit fraud: once over the government’s benefit fraud hotline and once online.

Why? He was spotted at a nearby beach with his ill father, and had been seen on a bus to the city centre. “It was often to pick up a prescription. The bus stop is 100 metres from my house,” he explains to me. “I have crutches to use if [my health] flares up.”

You are likely to have seen many benefit fraud stories in the last few years. It features everywhere you look in the media, from the BBC’s programme Saints and Scroungers to the “shameless” and “swindling” families often plastered across the Daily Mail.

Stories such as David’s – of ordinary honest disabled people put through hell – rarely make the news. But he is far from an anomaly. In 2016 the Observer revealed through freedom of information requests that out of a million alleged cases of benefit fraud put forward by the public between 2010 and 2015, a staggering 85% were completely unsubstantiated. Last month the Independent reported there had been almost 300,000 public tip-offs on benefit fraud in the past two years that had resulted in no action due to a lack of evidence. This is spy-on-your-neighbour Britain, where the sick individual with crutches isn’t a fellow citizen who should be offered help but a scrounger to dob in to the authorities. This has hardly happened by chance. For decades, the benefit fraudster has been the villain of choice for certain sections of the press and the political class. The left has by no means been immune. While previous Labour governments launched large-scale redistribution through the tax credit system, they never did enough to challenge the narrative perpetrated by the press of work shy claimants.

But more recently the scrounger narrative has sharpened as the right has carefully positioned the benefit fraudster as a natural bedfellow of austerity, the scapegoat to justify the obliteration of social security in the last eight years. Conservatives have created a witch-hunt against people on benefits. As the first cuts to disability benefits were introduced amid talk of the bloated welfare bill, the DWP ran advertising campaigns telling us that we, the public, had an important role to play in identifying benefit cheats. National newspapers ran campaigns calling on “all Brits to be patriotic and report any cheats you know”. All are fully aware that benefit fraud accounts for just 1.1% of the total benefits bill.

Government ministers have also adopted rhetoric suggesting disabled people are faking in order to get social security, and the majority of new claimants of sickness benefits are actually well enough to do some work. Theresa May’s former policy chief, George Freeman, said welfare should go to the“really disabled”. Esther McVey, the newly appointed work and pensions secretary, once bragged that she’d go after the “bogus disabled” while abolishing the lifeline of disability living allowance in her former role as minister for disabled people.

This isn’t simply rhetoric, it goes to the heart of government policy. Private companies are hired to push the sick through assessments so inaccurate that this week it emerged the government will have to review the benefits of 1.6 million disabled people that they may have wrongly removed, while claimants are sanctioned, often for reasons outside of their control, to the extent that people are left starving.

In this anti-welfare climate, it doesn’t actually matter if someone is lying to claim benefits or not. By dint of receiving “taxpayers’” money, they are still said to be cheating “hardworking families”. At a time when low pay is leading to a state of chronic insecurity, this sort of divide and rule tactic is particularly dangerous, as workers are sold the lie that the reason their wages can’t pay the rent is because the paraplegic person across the street is living the life of Riley. In reality, they’re struggling to afford to eat. Just this month, research found the majority of disability benefit claimants are being left without enough to live on.

How we treat benefit claimants speaks to wider societal negative attitudes towards people in poverty – a culture in which those who are unable to pay the rent or afford food for their children are increasingly seen as being there because of their own failings. We are witnessing individualism at its most rampant – a scale of dehumanisation that has reached such heights that even a wheelchair user can be judged as “undeserving”.

It’s time to counter this more effectively. When the public respond to the rightwing benefit scrounger narrative by snooping on their neighbour, it’s the job of the left to create an alternative argument.

In conjunction with the Frameworks Institute, the Joseph Rowntree Foundation is running a Talking About Poverty project to understand how people who care about poverty can communicate about it in a better way. This is exactly the conversation we should be having. Part of this must be about setting out a positive, collectivist view of the welfare state that sees a social safety net as an ideal to protect all of us, rather than a national drain for a few to exploit. It must also involve addressing the roots of people’s insecurity, from low wages to unaffordable housing, while countering longstanding prejudice towards disabled people.

David was quickly cleared of any wrongdoing with his benefits but, seven months on, the ordeal has taken its toll. He’s now under the care of a psychiatric nurse and is trying to move house to feel safe from his neighbours. The other day, he tells me, an ex-colleague shouted “scrounger” at him as he walked into the local GP’s surgery. “Right now, I’m almost terrified to go out,” he says.

David’s name has been changed to protect his identity.

Payment Cards in Adult Social Care

courtesy In-control

Payment cards are a way for local authorities to manage the allocation of funding for individuals in need of adult social care, including disabled people, older people, and carers of disabled people. Instead of an individual receiving a direct social care payment directly into their bank account, local authorities can load the allocated funding onto a payment card.

After concerns were raised regarding usage of the cards, a Freedom of Information request was issued to all social services authorities in England on behalf of the Independent Strategy Living Group.

The key findings

All local authorities with social services responsibilities for adults responded to the freedom of information request.

Across the 152 local authority areas, 629,989 people receive long term care and support, over two thirds of these were in receipt of a personal budget. 69 local authorities reported.

37 local authorities provided figures on the fees and operating costs they incurred. In total these local authorities spent £1,112,126 which represents £66.28 average set up cost per person.

At the time of the freedom of information request Two card providers dominate the market, providing services to 78% of all local authorities using payment cards.


Local authorities can view transactions disabled people make on the cards by accessing the client’s account online.

Local authorities commonly tightly control the use of money on the cards, often placing blanket restrictions on cardholders using the payment cards to withdraw cash. Despite the Department of Health issuing statutory guidance which says local authorities should not place restrictions on cash withdrawals from paid cards, a third of local authorities do not permit cash withdrawals.

Issues & concerns

Practice in relation to payment cards varies substantially geographically.

Common themes around how the cards are operated revolve around restriction and control, rather than promoting choice and flexibility.


The attraction of payment cards seems to lie in the ability they give to local authorities wishing to monitor spending, meaning an increasing number of local authorities are not following statutory guidance.

Payment cards can lead to disabled people being subjected to unfettered monitoring, with unnecessary storage of personal information.

It is not clear that disabled people are being made aware of the level of oversight and control which accompanies the use of the cards.

The local authority has the unilateral power to monitor, control and to seize funds with no requirement for due process or appeal. There seems to be little transparency or accountability for actions which could have far-reaching consequences for the disabled person and their family.

Whilst payment cards are justified in allowing an established monitoring process, this fails to question the need for such high levels of scrutiny in the first place. Default restrictions are the norm and a blanket ban on cash withdrawals are imposed by many authorities.


In contrast to the scrutiny on spending expected of disabled people, many local authorities could not say how much the schemes had cost them to introduce or to run. It is therefore not clear that the additional cost of operating such systems can be justified.


The cost of establishing and maintaining the cards varies widely.

Choice and control

The extent to which the cards are a voluntary option for local people varies widely.

In a concerning number of cases, traditional bank accounts are not readily offered as an alternative.

There is little evidence that local authorities are making people aware that payment cards must be a considered and active choice from a range of options. Consequently there are significant indications that choice over how personal budgets are managed is being curtailed.

In many other areas, payment cards are being imposed as the default option for managing personal budgets and are a major barrier to direct payments.

There is little or no evidence to suggest payment cards are being introduced to meet a growing public demand for such financial services, or that they offer any benefit to the end user that a traditional bank account cannot.


10 things to remember if you are using, or thinking of using, payment cards…

1. Payment cards should be an active choice made by the person from a range of meaningful options, including a traditional direct payment paid into an account managed by the person or their representative.

2. Where a payment card system is used, the person should be free to exercise full choice and control. There should be no blanket restrictions on cash withdrawals from payment cards. Accounting for cash withdrawals should be subject to the same returns and receipts policies that direct payments are subject to.

3. Where a payment card system is used, the person should be free to exercise full choice and control. There should be no blanket restrictions on cash withdrawals from payment cards. Accounting for cash withdrawals should be subject to the same returns and receipts policies that direct payments are subject to.

4. There should be no default restrictions on the places in which, and services for which, the card can be used.

5. Any restrictions on the card should be individually placed and proportionate to specific, identified, documented and assessed risk.

5. Prior to placing individual restrictions on a person’s card, it should be considered whether this represents a deprivation of liberty and as such, whether due process has been followed.

6. The process for accessing and monitoring a cardholder’s account must be open, transparent and regulated in a way that respects the individual’s dignity. Access and monitoring should be restricted to a named monitoring officer of the council who must notify the cardholder in advance each time access is to be made to the account (unless serious misuse of funds is detected and brought to the attention of the cardholder first). Monitoring should be limited and proportionate and a record should be kept on the account of each time it has been accessed.

7. Cardholders must be told what information is held on their account, who has access to it and how long it will be stored for. The cardholder should also be told, in an accessible format, under what circumstances and after what process any restrictions might be placed upon the use of the card.

8. Changes to the money available in the account are akin to changing a support plan and should only be made following appropriate review or reassessment process that the cardholder has been central to. In the event of the death of the budget holder, local authorities will need to close the account and seek to recoup any uncommitted surplus money. They should first communicate their intention to do so to the next of kin or other appropriate person dealing with the estate of the deceased individual, so a final account position can be agreed. Unilateral suspension or closure of accounts should happen only in the most exceptional of circumstances and in order to prevent a known fraudulent misappropriation of funds.

9. In circumstances where the local authority wishes to suspend or place restrictions on the card, they should follow published written procedures that detail the investigation process, timescales and the arrangements in place for sharing findings with the subject of the investigation. People subject to investigation should be provided with a copy along with the procedures followed, in an accessible format. They should also be informed of the arrangements for considering and acting upon findings and what mechanisms for hearing an appeal are.

10. Each year the local authority should publish a statement detailing the number of people they provide personal budgets to, the proportion who use payment cards, and the fees incurred for using the cards. They should also publish a clear and comprehensive explanation of their policy and practice concerning payment cards.

Direct Payments: the disparities between local authorities

courtesy Disability Horizons

Chris Cusack, who has Spinal Muscular Atrophy (SMA), examines how Direct Payments and the level of care people are getting differs vastly between local authorities – it really does seem to be a postcode lottery.

In England, social care provision has undergone radical changes over recent years. In the early 1990s, the money needed to cover people’s physical care (currently called Direct Payments) was funded by each person’s local authority and a central government body called the Independent Living Fund.

However, thanks to our seemingly perpetual state of austerity, there has been a decentralisation of services – and now a massive disparity in the services provided.

These changes began, as all things do, with good intentions. With the quest to allow different regions to be more proactive with their own budgets and to meet regional differences in demand. However, there is a growing sense of worry. No, worry is not a strong enough word. A sense of persecution and anger amongst disabled people at the practical consequences of these changes.

The Care Act

The Care Act was introduced in England in 2015 and attempted to set out the responsibilities of local authorities after the decentralisation. It stated that local authorities were charged with “promoting an individual’s well-being,” rather than simply providing care.

It’s been just under three years since this act came into force and, in reality, the subsequent systems put in place appears to not be up to the task in large areas of the country. In a report published by In Control on behalf of the Independent Living Strategy Group, 58% of respondents reported that their quality of life had reduced, or reduced significantly, over the preceding 12 months.

The same report said that a quarter of respondents had stated that the hours of work or volunteering they could do had reduced significantly as a result of changes in their care. This comes at a time when the government is keen to get every capable adult into the workforce, both for the health of the economy and for the individual’s positive sense of self.

After the Care Act, the money previously ring-fenced and used by the Independent Living Fund was distributed amongst local authorities. However, these local authorities have very large disparities in the number of disabled people falling within their boundaries.

They also do not have the economies of scale that the Independent Living Fund had and therefore have far larger administrative costs. This has all served to put a severe financial burden on some already struggling councils.

The best way to illustrate the end result of these changes is not through statistics and statutes, but to show the human effects through two cases – my own and that of a friend.

My own story

I am 49-years-old and live in Hertfordshire with my wife. My particular subtype of SMA – type II – is progressive and, currently, an incurable condition. It has left me with very little muscle strength and completely dependent on 24-hour care.

I currently don’t work, but my wife does. My local authority performs yearly reviews of my continuing care package. These are used largely to ascertain whether there have been any changes to my condition that warrant increases in my package, to ensure it adequately meets my physical needs and allows me to live as independent a life as possible. I feel supported and largely in control of my own care needs.

Lorraine’s story

Lorraine is a little younger than me and lives in Coventry with her disabled husband. She has exactly the same condition and subtype as me, and requires an identical level of care.

When Lorraine’s care was reviewed in February 2017, she was told her essential care was going to be cut, leaving her without any night-time support and only the bare minimum during the day.

Her assigned social worker had produced a report so full of mistakes that it didn’t even have the correct condition stated – he had put multiple sclerosis instead of spinal muscular atrophy. Being a strong, independent and intelligent individual, Lorraine sought legal advice and subsequently demanded the assessment was done again. She also lodged a formal complaint about the social worker.

Lorraine received a formal apology from the adult social team, who agreed (as it was obliged to), to reassess her with a female social worker. As the council were keen to supply any technology that could feasibly take the place of Lorraine’s team of carers (and thus, cost less), she also had an assessment by an occupational therapist (OT).

The OT reported that there was no equipment that would help with the level of care that Lorraine requires to live her everyday life. Along with Lorraine’s care manager, the OT agreed that Lorraine required 24-hour care and sent the assessment back to the adult social care team.

Whilst waiting to hear, Lorraine wrote a care diary, logging every single action her PAs had to take for her. She also got a letter from SMA Support UK to back up her case.

After the threat of a health-endangering reduction in her care having hung over her for a year, in January 2018, a second social worker was sent to assess Lorraine. This assessor had not prepared for meeting Lorraine and knew nothing of the background of her case. They also stated that adult social care does not, under any circumstances, pay for night care.

Lorraine’s case was then assessed by Continuing Healthcare (CHC) – a fund of money coming under the auspices of the NHS rather than the local authority – to ascertain whether it would be able to fund her overnight care. CHC is primarily in place to provide a level of care for someone with an ongoing medical condition, such as cancer or someone recovering from medical trauma.

But, as expected, her case was turned down. Her latest social worker has simply offered her a single hospital bed – forcing her out of her marital bed – and adult nappies in case she needs the toilet when her care is not available. She has, once more, had to go back to the lawyers to continue her fight.

It has all, understandably, been a source of extreme worry for Lorraine. Faced with the prospect of this kind of fight for her basic human rights for the rest of her life, she has admitted to suicidal thoughts.

The state of disability care

Lorraine’s case may seem extreme, but hers is a story being mirrored up and down the country. Current social care through direct payments has more to do with your postcode than your physical needs.

Impoverished local authorities are being forced into impossible situations, where the only way to claw back money is to target the most vulnerable in our society. There is a silent crisis looming, a crisis already causing both psychological and physical harm to many.

The Care Act was meant as a way to help enhance the lives of the disabled people under its care. Not as a vehicle to allow local authorities to provide the minimum care simply to stop people being admitted to hospital.

Basic care is not being met by a significant number of local authorities and we, disabled people, will be silent no more! Write to your MP, petition your councillors, be heard and take back the power to affect positive change and good relationships with your local authorities.

By Chris Cusack

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-anticipated 
report into Britain’s disability benefit system and it pulled no punches. The picture it paints is one of incompetence and outright cruelty: assessments riddled with errors and omissions or even fabrications; poor use of medical evidence that often leads to people’s benefits being incorrectly removed; and a “lack of determination” from the Department for Work and Pensions (DWP) to address its failings. As the MPs damningly put it, the disability benefit system has reached the point at which “a pervasive lack of trust is undermining the entire operation”.

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-related bone marrow disease who was denied personal independence payments (PIP) because she had a degree – as if working to gain a qualification is a sign someone isn’t “really disabled”. These are not isolated incidents, a few bad apples in an otherwise decent system. MPs say a “substantial minority” of claimants are being failed. It’s business as usual for Britain’s broken benefit system.

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-house”. But while removing outsourcing from the social security system is vital, this misses a key point: if we are to fix this scandal, it isn’t simply the private companies conducting the assessments that we need to get rid of but the ministers who develop the policies behind them.

From their rollout by the coalition to Theresa May’s cabinet today, the very premise of the Conservative’s so-called reforms to disability benefits has been to shrink the “welfare” budget, part of a wider bid to pull back the state. The DWP launched the tests for PIP in 2012 by bragging that half a million disabled people would lose their benefits by the end of it, and last year it slashed employment and support allowance (ESA) – the benefit for people so severely ill that they can’t work – on the premise it would be an “incentive” for them to get a job.

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-depth study in 2015, consulting doctors and the public. It showed that doctors want to care for those facing the end of life and have no appetite to become agents of death.

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-hand knowledge of them as patients.

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-fix solutions. We don’t resolve the question by disposing of the patient.

Baroness Finlay is professor of palliative medicine and a cross-bench peer.

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-to-face assessment and regular reviews of a claimant’s ability to wash, dress, cook and get around as well as reading and communicating.

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-term, neurological condition. I went from being fit and healthy to now walking with a stick and struggling to get about. 

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-bound for two years. As well as my physical health problems, I also have rather severe depression. I do not see this as something other than a pretty natural response to my current predicament.

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-tier tribunal.”

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 52-year-old, known only as TP, a Cambridge graduate who once worked in the City, has non-Hodgkin lymphoma and the rare lymph node condition Castleman disease. Following a successful hearing last week, a full judicial review of his claim will take place next month, the first high court challenge of its kind.

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-needed benefit for people trying to cope alone at home with a substantial disability,” TP told the Observer. “This includes the most very vulnerable of society. It piles on a financial burden at a time when these people are most in need of assistance to continue their day-to-day lives as best they can.”

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-service area, led to a reduction in his benefits which, say his lawyers, has resulted in their client being £178 a month worse off. They contend that the government’s decision to introduce the single benefit, while removing his disability benefits, has left TP in financial difficulties, which have had a major impact on him at a time of extreme ill health and stress.

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-up payments” for claimants moving to UC. Gauke had pledged: “No one will experience a reduction in the benefit they are receiving at the point of migration to universal credit where circumstances remain the same.” But both the work and pensions select committee and the House of Lords secondary legislation scrutiny committee have concerns that disabled people could miss out on benefits, with no top-up payments planned until July 2019. “We believe that by taking away these essential benefits for some of the most vulnerable people in society, the government has acted unlawfully,” Gregory said.

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 recommendations

The Review’s recommendations were that:

    1. The Department simplify and better co-ordinate communication products to provide a clear explanation of user responsibilities and ensure accessibility for all. This should include the use of digital media to provide claimants with real examples of what functional information they should submit as part of their claim.

    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-to-end audit process.

    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-emphasises and ensures that employment will not disadvantage claimants when they seek to claim PIP and explores ways in which PIP may be an enabler in improving employment retention.

    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.

New website

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-ceilinged office at the back of a housing estate, she starts sobbing. “I cannot live like this any more.”

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-offs – not representative of fair-play Britain. But Pike and her colleagues know different. They see a system that routinely snatches money out of the hands of people who need and are entitled to it and bullies claimants with contempt.

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-duty painkillers were wrecking her kidneys. She was summoned for a reassessment in Southend, a 70-mile round trip from her home in London – tricky for a woman who cannot walk more than 10 steps without crutches. Claimants such as Moira are entitled to a home assessment, but Pike told me they are often dispatched “miles away”. She was still told off for being late, says Moira. After the examination, she lost her personal independence payment.


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-saving”.

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-changed of their benefits.

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-class people”.

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-retching. She sits in the hearing room, a black woman in an Adidas tracksuit and on crutches facing three white people with their laptops and thick handbooks. This is how Tory politicians’ rhetorical divide between the deserving and undeserving poor is made bureaucratic reality. Moira has minutes to prove she is on the right side.

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): [2016] 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-founder of Disabled People Against Cuts said:

“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-age claimants.  The purpose of the benefit is to compensate for extra costs of disability.  Eligibility for PIP is a points-based system where points are assigned to descriptors illustrating the difficulties person experiences in carrying out specific activities.

[ii] See the judgement here https://www.gov.uk/administrative-appeals-tribunal-decisions/mh-v-secretary-of-state-for-work-and-pensions-pip-2016-ukut-0531-aac


[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-assessment-criteria-equality-analysis.pdf

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 o.persey@publiclawproject.org.uk

Advice for Professionals re- exemptions for people facing assessments

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-to-face assessments for disability benefits can cause, especially for women and men with mental health conditions. The prospect of interview can induce overwhelming anxiety, panic and dissociative states, levels of stress and distress that can precipitate serious relapses, leading to psychiatric admissions and even suicides. Consultant psychiatrist Dr Jed Boardman said: “You see people relapsing as a consequence of getting distressed about being assessed.” (Fit-for-work tests linked to relapses in those with mental health problems Guardian 24 November 2015.)

Therefore, it is vital that professionals know about the benefit system regulations on exemption from the face-to-face interview and for assessment on paper evidence.

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-ordinator, psychologist, psychiatrist, key worker, support worker, therapist, counsellor, Independent Domestic Violence Advocate… Opinions from non-medical staff are relevant to describe people’s problems functioning.

It is important to recommend exemption from the face-to-face interview very clearly. Don’t recommend a home visit: this can be worse than an assessment centre interview, as for women rape survivors or others, their home is their safe space which would be violated by an official visit. You may be rung by the assessor as a follow-up, so make sure you are up-to-date with your patient’s situation.

Employment and Support Allowance (ESA) and Personal Independence Payment (PIP) are different benefits with different reasons for exemption:

 ESA is an out-of-work benefit based on limited capability for work where complete exemption from back-to-work conditions is possible. In places where ESA is replaced by Universal Credit (UC), this exemption is in UC regulations 2013 Schedule 8 and also applies to the compulsory “Health and Work Conversation”. Widespread opposition to the brutal UC regime has delayed national rollout.

 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-risk-lcw 1. A claimant who does not have limited capability for work as determined in accordance with the limited capability for work assessment is to be treated as having limited capability for work if paragraph (2) applies to the claimant. 2. Subject to paragraph (3) this paragraph applies if … (b) the claimant suffers from some specific disease or bodily or mental disablement and, by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work. 3. Paragraph (2)(b) does not apply where the risk could be reduced by a significant amount by – (a) reasonable adjustments being made in the claimant’s workplace; or (b) the claimant taking medication to manage the claimant’s condition where such medication has been prescribed for the claimant by a registered medical practitioner treating the claimant.

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-to-face exam — they call it consultation. (PIP Assessment Guide, Part One – The Assessment Process, 1.2.2/1.3.6, 2 November 2017) https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/655611/pip-assessment-guide-part-1-assessment-process.pdf The assessor can make a decision from paper evidence where “there is strong evidence on which to advise on the case and a face-to-face consultation is likely to be stressful for the claimant…” (1.5.4) Assessors “should also consider the needs of vulnerable claimants”, that is “someone who has difficulty dealing with procedural demands” including “a previous suicide attempt, domestic violence, abuse or bereavement.” (1.3.11)

1.5.4 “Cases that should not require a face-to-face consultation” ―Although each case should be determined individually, the following types of case should not normally require a face-to-face consultation: […] • There is strong evidence on which to advise on the case and a face-to-face consultation is likely to be stressful for the claimant (for example, claimants with autism, cognitive impairment or learning disability) • The claimant questionnaire indicates a high level of disability, the information is consistent, medically reasonable and there is nothing to suggest over-reporting – (examples may include claimants with severe neurological conditions such as multiple sclerosis, motor neurone disease, dementia, Parkinson’s disease, severely disabling stroke) • There is sufficient detailed, consistent and medically reasonable information on function.

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-relations@chdauk.co.uk They usually reply within two days. Always cc the MP and ask them to follow it up on behalf of the claimant.


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-customerservice@atos.net

 Write to the DWP’s Disability and Carers Service, address is on the patient’s PIP letter. And/or email them at blackpoolbc.customercomplaints@dwp.gsi.gov.uk

 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-based assessment. Google “Find my MP” or search the Parliament website, choosing the constituency contacts. MPs’ caseworkers have direct lines to benefit officials and can often quickly resolve distressing situations. Involving the MP gets your concerns taken more seriously.

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-image. In mental health, addictions, abuse/domestic violence situations, I think there is something very unseen and unaddressed going on that makes women like me and others, more likely to be unable to meet the demands of the benefits system. More likely to fall between the cracks.”

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

Contact WinVisible:

Crossroads Women’s Centre

25 Wolsey Mews, London NW5 2DX

Email win@winvisible.org

Web www.winvisible.org

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-funded assistance have been blamed on austerity, there is one area of care that is rolling in cash, hundreds of millions of pounds being thrown into assessment and treatment units and psychiatric hospitals for people with learning difficulties and autism. Research by Mark Brown at Lancaster University’s Centre for Disability found that the Government spent £477m last year on incarcerating 2,500 people with learning difficulties and autism in ATUs ; in cash terms the state is prepared to pay £190,800 per year or £525 per day for institutionalized care for one individual.

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-stays that then become long-stay placements. This is caused by the systematic failures of Local Authorities and Clinical Commissioning Groups to adequately fund local education, health and social care services that would facilitate disabled individuals’ participation in their local mainstream education provision whilst living with their families. These figures do not include people with learning difficulties or autism who have restrictions placed on their freedoms whilst living in institutionalised psychiatric and social care settings as a result of deprivation of liberty safeguard order issued under the Mental Capacity Act 2005.

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-cover investigation into Winterbourne View. Since then there has been various investigations into abusive practices that have taken place in a range of ATUs. Disabled people with learning difficulties and autism have been killed in these institutions by toxic medication, neglect and total abuse inflicted by management and staff. Institutionalisation and forced overmedication are grave and systematic violations of disabled people’s human rights.

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-psychotic medication infringes a disabled person’s autonomy, and control over their body and mind, altering personality and interfering with personal identity and life-style. When not medicated, inpatients will undertake a whole range of therapeutic activities that place an emphasis on developing individual’s coping strategies and where possible to help the person minimise or reject their disability identity and their sense of being, thinking and feelings; the patient is forced to follow neuro-typical patterns of being, thinking and feeling. Patients are self-obsessed with analysing and reviewing their own performance with no allowance given as to how institution and other powerful forces impact on their wellbeing.

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 peers. Disabled people will always be threatened with institutionalisation and incarceration as long as ATUs and other institutions exist and are permitted under the Care, Mental Health and Mental Capacity legislation.

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-sanctioned institutionalisation and compulsory treatment of disabled people.

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-patients with learning difficulties and autism who want to be released from psychiatric hospitals. I have over 20 years’ experience campaigning for disabled peoples’ human and civil rights, working for People 1st, the United Kingdom’s Disabled Peoples Council and the Alliance for Inclusive Education and Not Dead Yet. Anyone wants to contact me please do so via Ellen Clifford at ellen.clifford@inclusionlondon/org.uk

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-person disability premiums, leading to a cut in weekly income of £60 or more.

The last time this very serious issue was covered in any detail was back in 2012 when Tanni Grey-Thompson headed a campaign to raise awareness of the problem that universal credit will cause for disabled people living alone.

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-plus difference, the likes of myself will receive no increase. Meaning that all the transitional payment does is delay the situation, the end result being the same, an income loss of more than £2,000 over a period when all other costs and benefits may have risen.

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-Thompson mentioned it in 2012, the government has not addressed at all (or doesn’t care to).

Steven Livingston

Peacehaven, East Sussex

Sarah Graham – Freelance Journalist

Looking for young disabled people

Sarah wants to hear from disabled young adults (20-30ish) who are desperate to move out of their parents’ home but struggling to find the accessible housing they’d need to live independently.

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-graham.co.uk. It’s for a sensitive feature looking at the problems disabled millennials face accessing suitable housing – case studies do need to be happy being identified.

Why DPAC has concerns about a neo-Liberal Basic Income

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-operation among those, internationally, who reject the notion that basic income represents any kind realistic response to the neoliberal attack.

Endorsements and other responses can be directed to us at ocap@tao.ca.

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.

No-one wants to find themselves in these desperate situations. As a society we have to guarantee that those who do can access the legal support they need.

Without that legal help the rights that we have - often hard-won by social justice campaigners across the decades - are not worth the paper they are written on.

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-tier civil justice system, open to those who can afford it, but increasingly closed to the poorest and most in need of its protection.”

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-cat lawyers. But I visited a community law centre in London earlier this week and saw what a deliberately malicious stereotype this is. There, seven lawyers were doing their best to represent the 250,000 citizens of the borough. Each lawyer earns around £35,000 per year. I heard cases of families living in cars and of people taking sleeping tablets to block out the pain of being cold and hungry. But thanks to that law centre at least people are in a position to take legal action to reverse the wrong decisions that can lead to such tragic circumstances.

Worryingly the numbers of such legal aid providers is diminishing. Figures I obtained from the government last week show that the number of not-for-profit providers doing legal aid work is down by nearly 80% in some areas since 2010.

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-changing decisions don’t get the early legal support they need, this can end up costing the state much more further down the line, as cases escalate into expensive family court battles, people are forced to represent themselves and end up clogging up our courts, or as people lose their homes, jobs or their health falters with severe costs implications for society.

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-benefit analysis on the wider impact of reducing early legal help.

Labour is committed to immediately re-establishing early legal help for all those cases dealt with by the family courts. The government should make the same commitment. Ministry of Justice figures show that since legal aid was removed for many family law cases, nearly two-thirds of those in private family court cases now have no access to a lawyer and are forced to represent themselves.

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

courtesy Guardian

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-type version didn’t reach her office until late evening, long after the issue had been debated.

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-quality, impairment-specific employment support for disabled people.”

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-print versions of government documents typically arrive later than standard issue papers, according to de Cordova’s parliamentary team. While her colleagues rushed to pick up copies of the autumn budget paper immediately after the chancellor announced it in parliament last week, De Cordova’s readable version wasn’t ready until the next day. Her office was still waiting, eight days in, for a large print copy of the Office for Budget Responsibility’s response statement.

Such delays make a concrete difference to the amount of time she has to prepare. “I’m at a disadvantage to my non-disabled colleagues, there’s no question,” de Cordova says, adding that she has had to work harder and longer hours throughout her career. “Everything requires more work and more prep – and there are things we don’t even know about that other people are benefiting from.”

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-roofed atrium at Portcullis House dims as it darkens – earlier during these winter months – making visibility even more of an issue for the sight-impaired. De Cordova’s office is relatively close to the Commons’ chamber and she has memorised the route so she can swiftly make it to votes.

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-sightedness, she studied law at South Bank University and then worked with charities focused on rights for the blind and partially sighted, before setting up the charity South East London Vision in 2014. That year she was elected a Labour councillor in Lambeth, south London, and was already representing disabled workers on behalf of Unite the union. De Cordova was still working for disability charity, the Thomas Pocklington Trust, when she was selected as Labour candidate for Battersea, a seat that had an 8,000 Conservative majority and was considered unwinnable. “My boss said he was happy I was standing and that he’d see me after the election,” she says.

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-third of social care goes to disabled people and that isn’t really talked about, but it allows people to stay in their own homes and live independently,” she says, of funding that has been slashed by a third since the Conservatives came to power in 2010. She says Labour would reverse cuts to employment and support allowance.

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-disabled people, leading the charity to warn that disabled people are being “shut out of the jobs market”.

Transport is a key component – but as de Cordova points out, the Access to Work initiative, which provides means-tested workplace support including a transport allowance, has been capped, leaving claimants “terrified” for their future. De Cordova notes that many employers don’t know about this scheme, which she describes as “one of the best forms of employment support” if properly funded.

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 - even make it part of the recruitment process.” Locally, she wants all the train stations in her constituency to have step-free access.

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-in machines for bus, rail and air travel, as well as for computers, ebooks and ecommerce.

“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

courtesy dpac


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).

Bob Williams-Findlay introduced the summit with a great speech putting the present conditions faced by disabled people in historical context, warning against “reinventing the wheel” caused by a lack of knowledge of our movement’s history. Bob also spoke about the tension between reformist and revolutionary approaches to capitalist society in the Disabled People’s Movement, pointing out the contradictions inherent in the idea of ‘inclusion’, i.e. that it is possible to end oppression by entering into a society that rejects us at every turn. While Disabled People’s Organisations in the past took different positions on whether benefits or inclusion in paid work are the best solution to disabled people’s poverty and social exclusion, both are problematic in different ways and neither is a perfect solution. Previous DPOs, such as the British Council of Disabled People’s Organisations (BCODP), chose to focus on barriers and anti-discrimination laws, which Bob described as “politically naive”; a “rights” approach to disability activism identifies individual characteristics and demands concessions from capitalist society rather than seeking to change its fundamental basis. While many DPOs got sucked into service delivery rather than activism, DPAC builds on the tradition of earlier direct action groups including the Campaign for Accessible Transport (CAT) and the Disabled People’s Direct Action Network (DAN), but there is still not necessarily enough continuity of struggle.

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-fence’ after the closure of the Independent Living Fund (ILF)

– 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-house” services that CILs/DPOs had been contracted to deliver, such as payroll support)

– imposition of ‘pre-payment cards’ by LAs instead of Direct Payment bank accounts

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-run facilities such as Assessment and Treatment Units (ATUs), making the important point that “opposing all cuts” is not good enough for the DPM when there are some ‘services’ that actually oppress disabled people and deserve to be cut. Similarly, Claire Glasman from WinVisible raised the issue that councils “always have money to take children away from disabled mothers, but not to support disabled mothers to raise their children”.

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-operatives and social enterprises run and controlled by disabled people, under the principle of “nothing about us without us”, and that we need to have “professionals on tap, not on top” (a phrase that reminded me of Vic Finkelstein’s concept of “professionals allied to the community”).

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-provided services are likely to be the ‘next frontier’ of cuts affecting disabled people’s daily lives). The role of unions was also discussed, in particular the question of what kind of relationship the DPM should have with unions representing workers in the ‘care’ industry, the DWP, the NHS, etc. I was pleased to see that most of those present accepted a wider definition of “direct action” and did not reduce it to a narrow range of tactics, and that it was recognised that direct action needs to be part of a wider strategy and can be complemented by other forms of activism. One thing that emerged from the workshop was a plan to produce an up-to-date disabled people’s direct action toolkit, potentially based on that used by ADAPT in the US as well as the old DAN handbook.

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-ordinated future action…

Possible useful new resource

courtesy DPAC

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Loneliness: the second cruel stigma Britain inflicts on disabled people

Frances Ryan the Guardian

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Continuity of care

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

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

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

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

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

Reneging on agreement

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

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

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

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

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

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

‘Considerable strain’

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

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

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

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

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

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

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

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

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

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

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

‘Build consensus’

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

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

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

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

Working-age adults

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

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

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

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

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

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

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

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

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

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

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

Defend and safeguard their rights.

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

Advocacy is a process of supporting and enabling people to:

Express their views and concerns.

Access information and services.

Defend and promote their rights and responsibilities.

Explore choices and options

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Other useful resources

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

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

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

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

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

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

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

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

 • www.ageuk.org.uk/Documents/

What to do if things go wrong?

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

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

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

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

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

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