Dear Personal Assistant

Courtesy The Squeaky Wheelchair - Kathleen

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

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

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

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

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

Deidre Brock: Society must stop disabling people

Deidre Brock is SNP MP for Edinburgh North and Leith

Courtesy of Monday 9 October 2017 Edinburgh News

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

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

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

Government delays decision on funding backdated sleep-in payments

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

by Luke Stevenson on September 29, 2017 Community Care

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 27, 2017 in Community Care

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

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

The MCA: 10 years on

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

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

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

‘Lawful responsibilities’

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

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

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

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

‘Easier to challenge’

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

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

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

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

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

‘More relevant and person-centred’

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

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

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

Are PIP and ESA Assessments working well?

29 September 2017

The Work and Pensions Committee has launched an inquiry into the effectiveness of assessments for Personal Independence Payments (PIP) and Employment and Support Allowance (ESA).

Find out more

Submissions are due by 10 November 2017. Issues to be considered include

Assessors and assessments

 • Do contractor assessors possess sufficient expertise to carry out assessments for people with a wide range of health conditions?

 • Is Department of Work and Pensions quality control for contractors sufficient and effective?

 • Should the options for reforming the Work Capability Assessment mooted in the Government’s Improving Lives green paper be taken forward?

 • What examples of best practice in assessing eligibility for benefits are available internationally, and how transferrable are they to ESA and/or PIP?

Mandatory Reconsideration and appeal

 • Why do claimants seek to overturn initial assessment outcomes for ESA and/or PIP?

 • Why are levels of disputed decisions higher for PIP than for ESA?

 • Is the Mandatory Reconsideration (MR) process working well for claimants of ESA and/or PIP?

 • What accounts for the rate of overturned decisions at appeal for PIP and/or ESA?

 • Are there lessons that could be learned from the ESA MR and appeal process for PIP and vice-versa?

 • What changes could be made earlier in the process to ensure fewer claimants feel they need to appeal?

Claimant experiences

 • Do prospective claimants currently understand the purpose of the assessment?

 • How could claimants be helped to better understand the assessment process?

 • Are some groups of claimants particularly likely to encounter problems with their assessments – and if so, how can this be addressed?

 • Should the assessment processes for PIP and ESA be more closely integrated? How else might the processes be streamlined for claimants?

Changes to the Work Capability Assessment reassessment criteria

29 September 2017

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

See DWP policy paper

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

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

 • are unlikely to ever be able to move into work

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

This change does not affect:

 • ESA claimants placed in the work-related activity group

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

Legal Support Project: helping people to get legal assistance

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

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

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

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

Second round of funding now open

Get in touch

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

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

The Implications of Luke Davey vs Oxfordshire County Council case


Many thanks to Inclusion London for this useful analysis.

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

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

 Posted: 28 September 2017

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

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

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

The decision

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

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

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

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

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

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

Our intervention

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

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

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

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

Lessons for DDPOs

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

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

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

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

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

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

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

We lost this battle, but we will keep fighting.

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

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

by Rachel Carter on September 19, 2017 in COMMUNITY CARE

*Some names have been changed

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

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

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

How to deal with the pressure to cut costs

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

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

Register now for your free place.

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

It also found:

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

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

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

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

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

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


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

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

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

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

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

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

‘Losing a lifeline’

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

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

Source: a respondent to the survey

‘Change in need’

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

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

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

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

One social worker responding to the survey said:

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

‘No choice and control’

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

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

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

One social worker responding to the survey said:

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

‘Uncomfortable position’

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

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

More on this story

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

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

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

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

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

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

‘Expectation to reduce’

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

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

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

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

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

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

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

‘Devastating consequences’

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

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

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

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

‘Invidious decisions’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How ‘personal’ are personal budgets in 2017?

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

September 19, 2017 in Adults, Care Act 2014

By Caroline Abrahams

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

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

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

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

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

Care Act guidance on personal budgets

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

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

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

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

‘Eating alone’

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

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

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

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

‘Heavy scrutiny’

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

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

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

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

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

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

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

‘Honest debate’

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

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

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

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

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

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

by Rachel Carter on September 19, 2017 in Adults

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 6, 2017 in Adults, Care Act 2014

By Pete Feldon

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

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

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

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


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

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

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

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

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

Needs assessment

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

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

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

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

Posted on September 13, 2017

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

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

Read the full report here

Read the executive summary here

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

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

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

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

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

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

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

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

 ▪ becoming more isolated (40%)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The decline of local welfare schemes in England

courtesy DRUK

September 2017

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

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

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

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

Key findings

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

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

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

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

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

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

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

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

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

An Individual View of the Luke Davey Appeal Court case


September 2017

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

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


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


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


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

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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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




Joe Langlois


Disabled man Luke Davey's care cuts appeal dismissed

September 2017


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

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

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

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

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

'Rethink care'

He had argued the reduction was both unreasonable and unlawful.

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

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

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

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

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

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

'Financial constraints’

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

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

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

ELLEN CLIFFORD and ANITA BELLOWS report on how disability rights activists brought evidence of the Tories’ savage policies to the United Nations

August 2017

DEAF and disabled people’s organisations from across Britain have come together this week to give evidence about Westminster’s continuing violations of disabled people’s rights under the Convention on the Rights of Disabled people (UNCRPD), with a delegation that includes representatives from Disabled People Against Cuts (DPAC) and the Reclaiming Our Futures Alliance, as well as Disability Wales, Inclusion Scotland and Disability Action Northern Ireland.

There are two parallel processes. The UNCRPD committee will simultaneously hear about British progress in implementing the UN Convention on the Rights of Disabled People, as part of a periodic review of all nations that are signed up to the convention, as well as a presentation following up on the initial complaint made by DPAC under the optional protocol of the CRPD, which triggered the first inquiry against a state under this process.

The periodic review is wide-ranging and covers detentions under mental health legislation, employment, education, transport, housing, social care and independent living, specific discrimination against women, black people, intersex people, people with learning difficulties and so on.

On Monday August 21, deaf and disabled people’s organisations from across Britain gave a presentation in front of the committee in a closed session.

We highlighted the gaps in state provisions which undermine the government’s claim that the Westminster government’s public spending on disability and incapacity is higher than all other G7 countries bar Germany.

The issue is complicated by devolution and the different laws and arrangements which exist in the four nations.

What came out of the meeting was that not only has the Westminster government failed to progress CRPD implementation, but that rights hard fought for by disabled people have been dramatically eroded since 2010 by cuts. This has led us to today’s state of crisis where high numbers of people with learning difficulties and autism are trapped in institutions, there has been a rise in disabled children educated in special schools and the destruction of community support is leading to greater marginalisation and isolation of disabled people.

Following the closed session, deaf and disabled people’s organisations will have the chance to arrange meetings with individual committee members on specific matters such as access to justice, before the committee quizzes the Westminster government representatives on August 23-24. These examination sessions will be open to the public and livestreamed.

Also this week, the CRPD committee heard a follow-up presentation on the specific issues which triggered its inquiry in 2015 which found evidence of grave and systematic violations of disabled people’s rights by the Westminster government due to welfare reform.

These violations were closely related to welfare reform and the devastating and disproportionate impact on disabled people. The investigation carried out by the committee was indepth, involving reading thousands of pages of evidence and reports and a visit to Britain where disability committee members spoke to over 200 disabled people and organisations.

However, the government rejected the findings and dismissed the inquiry report as “patronising and offensive,” questioning the competence of the committee members.

The CRPD committee’s report was leaked to the Daily Mail the day before the US election. The response from the government was dismissive and totally ignored the committee’s conclusions.

One specific demand was for the government to undertake a cumulative impact assessment of the cuts, something that it has consistently refused to do.

This week disabled people had the chance to give a presentation on the worsening of the situation since that inquiry took place and the new cuts and measures that have been introduced without consultation or by bypassing Parliament and scrutiny — including the cut to personal independence payments brought in at the start of the year that will affect 164,000 people, predominantly those who experience psychological distress.

One major concern that disabled people have is around proposals outlined in the government green paper Work, Health and Disability: Improving Lives.

Its purported aim is to reduce the disability employment gap, but key measures it introduces will extend conditionalities and sanctions to more disabled people, ignoring calls from the National Audit Office to follow up on its initial examination of the impact of sanctions on disabled people, which suggests they actually lower chances for disabled people of finding employment.

For the government, the default position is that all disabled people are able to work, or able to do some work, if given the right incentives and motivation to do.

Using the flawed argument that work is the best way out of poverty, when more and more people in work are getting poorer, the government has devised a regime even more coercive than the previous one, for which impairments are something temporary which can be overcome with willpower and the right mindset. This government is a step away from denying the existence of disability.

Reflecting on the long journey, which has taken disability activists to the United Nations, there is some grounds for optimism.

The inquiry and its outcome mean that disabled people and disability issues can no longer be ignored. Their experiences have been validated by the inquiry’s findings, and the CRPD provides a framework for expressing our grievances and holding the government to account that is missing from domestic legislation. The fight is far from being over, but disabled people have become a vocal and powerful force in Britain.

Ellen Clifford is campaigns and policy manager for Inclusion London and

Anita Bellows is a Disabled People Against Cuts activist.

The Conservatives’ solution for unaffordable care? No care

Barbara Keeley The Guardian 17th August 2017

Despite evidence that life expectancy may be stagnating, the century-long rise should be a cause for celebration. However, for too many people – unsure whether they will be able to afford the care they may need or to plan for the future – their later years are proving to be a time of fear and uncertainty.

UK needs 71,000 more care home places in eight years, study predicts.

Now we learn there will be insufficient care home places, even if people could afford them: 71,000 more care home beds will be required within eight years – according to a Newcastle University study – to meet the demands of an ageing population living longer, with complex care needs. But there is little hope that these places will materialise.

Residential and nursing homes are already under unprecedented pressure. By the end of this financial year, £6.3bn will have been cut from social care budgets since 2010, with local authorities facing a £2.3bn care funding gap by 2020. These severe cuts, along with rising costs and problems of retaining and recruiting staff, mean that one in six care homes is now displaying signs of financial stress, and across England residential homes are closing.

And in the coming months, the signs are that things will get worse. The Association of Directors of Adult Social Services has reported that councils will have to cut social care budgets by a further £824m this financial year alone – meaning fewer older people getting the help they need with basic tasks such as washing, dressing and eating.

The Conservatives’ policy of cutting funding and leaving people to fend for themselves is simply not working. It has left us with 1.2 million older people living with unmet care needs, one in 10 facing catastrophic costs, and relatives forced to give up work to look after them. Although the Tories backed down from their “dementia tax” plans, more than 70% of people in residential care have dementia, and they face the highest care costs.

These harsh realities are brought home through the many cases I hear about, both in my constituency and in parliament. Cases like the woman whose homecare was cut suddenly from 10 hours a week to nothing. Her son had to step in to care for her, risking his job, which financially supported them both. Or the elderly people left without food or help with bathing when care staff did not turn up.

If this apathy towards the social care crisis continues, there is a risk not only of insufficient care beds, but of serious care failures.

In Labour’s manifesto, we set out comprehensive plans to tackle the short-term funding gap in social care, promising £1bn this year and £8bn over this parliament to stabilise the sector. This would enable us to close the funding gap, implement a living wage for care workers and enable an extra 36,000 people with high levels of need to receive publicly funded social care.

But we also recognised the need for a long-term funding solution to meet the needs of an ageing population. Labour’s national care service would be based on the principle of pooling risks, so that no one is left to face catastrophic care costs alone. A care cap would ensure those unlucky enough to develop conditions like dementia would not be penalised for doing so. And we would raise the asset threshold, so that no one loses everything they own, as well as introducing free end of life care.

Enough is enough. This government has had ample wake-up calls. Now it must give social care the funding it needs and develop a long-term plan to put the sector on a sustainable footing – so that today’s generation of older people and those to come get the care they need and deserve.

• Barbara Keeley, Labour MP for Worsley and Eccles South, is shadow minister for social care and mental health

Service user group intervenes in ‘Care Act breach’ court appeal

Equality and Human Rights Commission also makes submission in appeal brought by Luke Davey against ruling on care package cuts

August 16, 2017 in Adults, Care Act 2014

By Rachel Carter and Alex Turner

A service user group and Britain’s statutory equality organisation are to intervene in the case of a disabled man that could have significant implications for the application of the Care Act 2014’s wellbeing duty.

Luke Davey’s appeal against an earlier High Court judgment, which dismissed his case that Oxfordshire council’s decision to cut his care package breached the Care Act, will be heard in the Court of Appeal tomorrow (17 August).

Inclusion London, a charity for deaf and disabled people, has made a submission to the court to highlight the impact the case – believed to be the first legal challenge dealing with the Care Act’s wellbeing principle – could have on the lives of disabled people.

A spokesperson told Community Care that the organisation wanted to make it clear to the judges that this case “was not just about a single care package”.

The Equality and Human Rights Commission (EHRC) has also made a submission to the court in relation to the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and its “meaning and relevance” in terms of applying the Care Act.

‘Future care’

Davey brought a judicial review last year on the grounds that Oxfordshire’s decision to reduce his weekly personal budget by 42% was unlawful because it posed a direct risk to his wellbeing.

He argued that the cut could mean he would spend more time alone, which would cause him anxiety, and that it risked losing his established care team of 18 years.

The case was dismissed by Justice Morris in the High Court, who said it was understandable Davey objected to the cut, but there was “no relevant legal error” in the council’s actions.

Inclusion London’s submission focuses on two elements of the case. Firstly, that the judge held that Oxfordshire did not have to make “judgements about the future” when considering how the cut to Davey’s package would impact his existing team of personal assistants.

Secondly, it refers to Justice Morris’s reliance on the council’s assertion that a volunteer or family member would be available to take Davey on day trips, and his conclusion that Davey’s ability to take part in a wide range of social activities would not be affected.

The charity argues that both these conclusions are contrary to the Care Act statutory guidance on unpaid carers and wellbeing. Section 1 of the Care Act 2014 places a duty on councils to promote a person’s wellbeing when making decisions about their care.

It has urged the court to consider the underlying principles and intentions of the act and to recognise their fundamental importance to the lives and independence of disabled people.

‘Hugely significant’

Anne Novis, chair of Inclusion London, said the charity was intervening in the case because it wanted to “make sure the Care Act works for disabled people as it was meant to”.

She added: “Although the Care Act and the introduction of the wellbeing principle were meant to transform social care and put us and our wellbeing at the centre of the process, we know it does not happen in practice. Disabled people tell us their support packages are being cut to the bare minimum and their views don’t matter. Such cuts leave disabled people at risk of harm, and cause emotional, physical and mental distress.”

Louise Whitfield, partner at Deighton Pierce Glynn and the charity’s lawyer, added: “This is a hugely significant moment, because disabled people are intervening in proceedings to make their voices heard and ensure the law, designed to transform social care, works for them.

“This case is likely to determine how the wellbeing duty, which was introduced by the Care Act, will be applied in practice and what difference it will make.”

The Care Act and independent living

Article 19 explained

Article 19 of the UNCRPD, on ‘Living independently and being included in the community’, states:

States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

The Equality and Human Rights Commission’s submission to the court, meanwhile, argues that the Care Act “represents a re-focusing of the statutory framework for the provision of adult social care, in accordance with the UNCRPD and in particular Article 19, which puts the disabled person at the centre of all decisions”.

Justice Morris’s High Court judgment, the EHRC argues, incorrectly emphasised the lack of direct rights and obligations created by the UNCRPD within UK law. The judge failed to recognise that the Care Act “intended to apply these principles and should be interpreted accordingly”, its submission says.

The document notes a government response to a 2016 UN committee report that criticised how well the Care Act aligns with Article 19, in the wake of welfare reforms and local authority budget cuts.

In the response, the government said: “The wellbeing principle is intended to cover the key components of independent living, as expressed in the UNCRPD (in particular, Article 19 of the Convention). Supporting people to live as independently as possible, for as long as possible, is a guiding principle of the Care Act.”

Rebecca Hilsenrath, the EHRC’s chief executive, described Davey’s case as an important one that would give disabled people a “louder voice” when their needs are being assessed.

“Disabled people must be able to live independently and take part in activities others take for granted,” Hilsenrath said. “When assessing the needs of disabled people the local authority should consider the person’s ability to have a social life and be an active member of their community, not just basic home care needs.”

Court vigil

Davey is appealing on the grounds that Justice Morris made “very significant errors” when rejecting his argument that a risk to his wellbeing would arise if his team of personal assistants broke up because of the proposed reduction in their terms and conditions.

The case will be heard at 10.30am on Thursday 17 August.

Inclusion London will stage a vigil outside the court from 9.15am.

Join the Chronic Illness Inclusion Project

The Chronic Illness Inclusion Project is a new research project aiming to capture the views, needs and aspirations of people with chronic illness. Sign up to get involved. In the longer term our ambition is to grow into a user-led organisation.

new project aims to give a voice to people with chronic illnesses that get overlooked and misunderstood by the systems that should be supporting us.

The Chronic Illness Inclusion Project is a research project aiming to capture the views, needs and aspirations of people with chronic illness. It is part of the DRILL programme of user-led research and is supported by the Centre for Welfare Reform. You can sign up to find out more and get involved here

“As a sufferer of chronic ill health, I fully support the Chronic Illness Inclusion Project. People with chronic ill health are forgotten by governments when designing policies and never mentioned. We are often hidden by the umbrella term of ‘disabled’. The impacts of chronic ill health are wide ranging, from severe fatigue and cognitive problems, to days spent in lots of pain. The effects have a huge impact on the day to day functioning of a person. Many spend long hours unable to sleep or sleeping for long hours out of sheer exhaustion. You really cannot grasp those impacts unless you are affected by chronic illness. It’s not just the physical issues, you have to store that energy up to even have a shower or even go out for the day and plan well in advance, only to spend the next few days paying the price for small bit of enjoyment. It is time our voices were heard too, instead of our voices being alone in the wilderness. It can be very isolating. I urge people to join and support this campaign.”

– Gail Ward, Disability Campaigner DPAC NE/Black Triangle Campaign

We are inviting people to sign up to our mailing list where we can keep you up to date with activities and opportunities to get involved. Currently we’re planning an online discussion forum for people who are interested in having in-depth discussions about the social and political aspects of living with chronic illness. But in the longer term our ambition is to grow into a user-led organisation. How this happens could be up to you!

It will take time because we are two people with chronic illness working very part time hours. But this is a lottery-funded project where numbers count so by joining us you can help to show what a large and overlooked group we are.

Find out more by signing up to the mailing list


Catherine Hale and Jenny Lyus.

More information:

Government bows to care provider pressure over sleep-in payments

HMRC enforcement action suspended following care provider warnings of insolvency

by Alex Turner on July 26, 2017 in Adults

The government has responded to warnings by care providers that HMRC enforcement action risked bankrupting the sector, by waiving fines related to backdated pay owed to workers for sleep-in shifts.

In what it described as “exceptional measures to minimise disruption”, the government also said it would temporarily suspend, until 2 October, all enforcement activity relating to pay for sleep-in shifts.

The decision comes in the wake of a tribunal ruling that residential care workers who routinely ‘sleep-in’ as part of on-call shifts should be paid the national minimum wage for those hours rather than a lower flat rate, as most traditionally had been.

Following the case, HMRC had begun demanding back payments of up to six years, which providers had warned could “collapse” a sector already facing an intense funding crisis.

Care sector bodies had been calling for an immediate freeze on HMRC action while clarity was sought on the issue, with guidelines on sleep-in pay issued by the government as recently as 2015 appearing to contradict the recent judgment.

A statement from the Department for Business, Energy and Industrial Strategy (DBEIS) said: “Social care providers play a vital role in supporting some of the most vulnerable people in our society and workers in that sector should be paid fairly for the important work they do.”

It added that the government “will continue to look at this issue extremely carefully alongside industry representatives to see whether any further support is needed and ensure that action taken to protect workers is fair and proportionate, while seeing how it might be possible to minimise any impact on social care provision.”

Martin Green, chief executive of Care England, a group representing care providers, said: “I am pleased that HMRC will not be pursuing care providers for sleep-in payments. However, this is only part of the problem and providers may be required to pay years of back pay to staff who have done sleep-ins.

“The government must come up with a long term solution for this issue of sleep-in payments, including clarification about how this issue will be treated in the future, and if they will not allow sleep-in’s,  then they must make sure that the additional costs of waking staff are included in commissioning fees.”

But Dave Prentis, the general secretary of Unison, which represents a number of care staff who work overnight shifts, slammed the decision as ministers “caving in” to employers and delivering a “huge blow” for low-paid workers.

“Each year, care workers are collectively cheated of £130m in wages, but this outrageous state of affairs has failed to prompt any meaningful reaction from the government,” Prentis said.

He added that there was “nothing” in the government’s plans setting out how to ensure care staff would receive back-pay.

“It sends out a message to care workers that they are of little value,” Prentis said.

Continuing Healthcare cost-capping

Disability United

Last October, we at Disability United became very concerned by a policy from Southampton City CCG which appeared to allow people receiving NHS Continuing Healthcare to be moved away from their home into a residential placement purely on the basis of cost, even against their will. The cost of a local alternative placement which would meet the individual's medical needs essentially acts as a cap for care-at-home costs.

A Freedom of Information request was sent to every CCG and the responses sifted through for similar phrases. We are concerned about 58 policies. Many CCGs did not respond, so it seems likely that there are more with similar policies.

The idea that scores of NHS bodies have policies which could result in disabled people being “warehoused” against their will seems unbelievable, but here is a typical example of the wording in some of these policies: “The CCGs will normally consider funding a care at home package to the equivalent value of an appropriate residential placement... The CCG may consider funding a care at home package costing up to 10% more than an appropriate residential placement where the CCG considers it appropriate for the patient to remain in his or her own home with a clinically sustainable package.”

The amounts of money involved may not always be particularly high. As a theoretical exercise, this calculation was performed:  A nursing home placement can cost around £450 per week. 10% of £450 would give £45 per week. Per year, 10% more would be £2,340 which is less than a second-hand Ford Fiesta.

There is no question that this is not in-keeping with the spirit of the Independent Living movement. It also flies in the face of government policy, which for the past few years has been focusing on finding more suitable accommodation and support for people with learning disabilities outside of long stay hospitals.

There is also the question of Human Rights: Are these policies consistent with Article 8 of the Human Rights Act 1998, Right to Private and Family Life? We are exploring this further.

If legal resolution were sought, we would need case studies. If your organisation or an organisation you work with has case studies, please email me at editor@disabilityunited.co.uk

Years of austerity have left personal assistance in ‘very fragile state’

By Disability News Service

The concept of personal assistance has been severely damaged by years of austerity and policies that have “degraded” the support mechanisms designed to enable independent living, leading figures in the disability movement have warned.

They were speaking at the launch of Personal Assistance Relationships, a research study which highlights how employing personal assistants can be empowering and liberating for disabled people, but also discusses the “complex” and “variable” nature of such relationships.

Baroness [Jane] Campbell, one of the pioneers of the independent living movement, a co-founder of the National Centre for Independent Living (NCIL), and now a crossbench peer, said the state of independent living and personal assistance was currently “very fragile”.

Kevin Caulfield, of Hammersmith and Fulham Coalition Against Cuts, said that the “fallout” from increased charging for support and the closure of the Independent Living Fund meant that “lots and lots of disabled people who had access to good personal assistance and independent arrangements, those have been destroyed”.

But in his borough, the Labour-run council had abolished charging, ringfenced the funding people had previously received from ILF,and set up an independent review of the decision by a previous administration to scrap a direct payments support service.

Tracey Lazard, chief executive of Inclusion London, said that social care was now a “hot political issue”.

She said: “We have to grab that and make the most of it.”

 “I would hope any government would see that it is cheaper to support people in the community than to have them in residential institutions.

“Living independently in the community is what we all deserve.”

This is a shortened version the full article can be read here

New disabled MP accuses Conservatives of 'eugenics' policies to make disabled people 'suffer and die’

courtesy of the Independent 7th July 2017

The Conservatives have dismantled the welfare system and introduced a system of “eugenics” in an effort to make disabled people “suffer and die”, according to a newly-elected Labour MP.

Jared O’Mara, who has cerebral palsy, said the Government has “completely torn up the welfare system” by shutting down the Independent Living Fund and making cuts to disability and social care benefits. 

Mr O’Mara, who ousted former Deputy Prime Minister Nick Clegg from his Sheffield Hallam seat, also declared his support for efforts to bring a criminal prosecution against Tory ministers over claims that the Department for Work and Pension’s (DWP) “fitness to work” tests have led to the deaths of benefit claimants.

The former school governor insisted the policies were making disabled people have suicidal thoughts.

He told Disability News Service (DNS): “A lot of people say you can’t use that word, but I will do: it’s eugenics. They want disabled people to suffer and die. That’s literally what’s happening.

“Disabled people are out there suffering and dying because they have not got the financial means and financial support and nor have they got the legal means to lead an equal life, or even to lead a satisfactory life.”

He added that reports that mentally ill people have been asked why they haven’t committed suicide by independence payment assessors support his claims. 

“How is that not eugenics? Putting thoughts of suicide into a disabled person’s head. It’s literally eugenics,” he said.

“I’m not going to shy away from it, people might say I am taking it too far, but as far as I am concerned, what I have seen and what has happened across the board, it’s been eugenics.“There are people just like me and people who have got conditions that make things even worse for them than mine does, and they are dying and they are suffering.”

A DWP spokesperson said: “We have a proud record in supporting disabled people, including through the landmark Disability Discrimination Act.

“In the last three years, over 500,000 have moved into work and we continue to spend around £50bn a year on benefits to support disabled people and those with health conditions – more than ever before.”

In the wide-ranging interview with DNS, Mr O’Mara also said he “absolutely” supported efforts by anti-austerity groups to bring criminal proceedings against former DWP ministers Chris Grayling and Iain Duncan Smith relating to the fitness to work tests.

A disabled activist from the Black Triangle campaign lodged a complaint with Scottish police claiming the pair might be guilty of “willful neglect of duty by a public official”, but Scottish criminal justice agencies refused to investigate the matter in December. 

A DWP spokesperson said at the time: “It is important we make sure that people are receiving the right support, and they are not simply written off to a life on benefits.

“The Work Capability Assessment has been improved dramatically since 2008 following a number of reviews, including five independent ones.”

After a month in his role as Labour MP for Sheffield Hallam, Mr O’Mara said he has not been able to attend debates in the Commons chamber as he cannot stand for longer than 10 minutes.

The 35-year-old MP was diagnosed with cerebral palsy at six months old. The condition leaves him with severe fatigue and the right-hand side of his body is semi-paralysed. Mobility and standing for too long are issues and he needs bannisters on both sides of stairs.

The disability rights campaigner, who compares himself to Forrest Gump, previously said: “I’m this slightly eccentric, little bit weird disabled guy who keeps stumbling into large achievements.”