‘Biopsychosocial’ basis for benefit cuts is ‘cavalier, unevidenced and misleading’

The research that successive governments have relied on to justify slashing disability benefits over more than a decade is riddled with inconsistencies, misleading statements and “unevidenced” claims, according to three disabled academics.

A new article by Professor Tom Shakespeare and Professor Nicholas Watson, and fellow academic Ola Abu Alghaib, concludes that the biopsychosocial model of health (BPS) “does not represent evidence-based policy”.

The BPS under-pinned Labour’s out-of-work disability benefit employment and support allowance (ESA) and the work capability assessment (WCA), which has since been linked repeatedly to relapses, episodes of self-harm, and even suicides and other deaths, among those who have been assessed and found fit for work.

BPS has also “played a key role” in the tightening of eligibility criteria for ESA and other disability benefits by the subsequent coalition and Tory governments, including the new personal independence payment and universal credit, even though there is “no coherent theory or evidence” behind it, say the three authors.

The BPS was developed by Dr Gordon Waddell, an orthopaedic surgeon, and Professor Sir Mansel Aylward, who was chief medical officer for the Department for Work and Pensions (DWP) from 1995 to 2005.

Key to the BPS model, say the three authors, is the idea that “it is the negative attitudes of many ESA recipients that prevent them from working, rather than their impairment or health condition”, essentially branding many benefit claimants “scroungers”.

This allows supporters of BPS – including a string of Labour and Tory government ministers – to draw a distinction “between ‘real’ incapacity benefit claimants, with long-term and incurable health conditions, and ‘fake’ benefit claimants, with short-term illness”, with the model responsible for a “barely concealed” element of “victim-blaming”.

Shakespeare, Watson and Abu Alghaib say that this distinction “drives media coverage and popular attitudes to disabled people”, by creating this supposed contrast between “the deserving and the undeserving poor”.

They say BPS has been used to “underpin increasingly harsh and at times punitive measures targeted at disabled people” as the state tries to cut the number of people receiving ESA.

Their article, Blaming The Victim, All Over Again: Waddell And Aylward’s Biopsychosocial (BPS) Model Of Disability, is published by the journal Critical Social Policy.

It criticises the willingness of a succession of politicians, such as the welfare reform minister Lord Freud – who has described it in parliament as a “coherent theory” – to base their policies on the BPS.

Alyward left DWP to head Cardiff University’s Centre for Psychosocial and Disability Research, which for four years was sponsored by the US disability insurance giant Unum, a company that once bragged that UK government policy on incapacity benefit reform was “being driven by our thinking”.

The article says the centre has worked “extensively” for the Department for Work and Pensions (DWP).

In one of their articles, Aylward and Waddell say: “As an oversimplification, capacity may be limited by a health condition, but performance is limited by how the person thinks and feels about their health condition.”

But Shakespeare, Watson and Abu Alghaib say they have “carefully reviewed claims” made in the two publications, which they say reveals “a cavalier approach to scientific evidence”.

They point to “inconsistencies” and “misleading statements”, and they say that the authors “rely on unevidenced assertions throughout their work”.

They add: “Waddell and Aylward slide between general statements that are scientifically valid and specific statements that are matters of opinion or political prejudice.

“They also tend to cite their own, non-peer reviewed papers extensively.”

And they point to another quote from Aylward and Waddell, in which they say: “For most people with common health problems, decisions about being (un)fit for work, taking sickness absence or claiming benefits are conscious and rational decisions, free choices with full awareness and intent, for which they must take responsibility.”

This, according to Shakespeare – who is professor of disability research at the University of East Anglia’s Norwich Medical School – and his colleagues brands such people “scroungers”.

They say that, rather than “promoting the myth that large numbers of claimants are fraudulent”, the government should focus its attention on ensuring employers are “encouraged, supported, regulated and finally forced to give due consideration to disabled people as workers”.

They conclude: “Society must accept that work is not always appropriate or possible, and that for many disabled people humane and supportive alternatives to work are needed.

“These must not stigmatise those who are so supported, nor should non-working disabled people have to suffer poverty and social exclusion.”

The article is the first academic examination of the BPS, and particularly of two key publications by Aylward and Waddell: The Scientific and Conceptual Basis of Incapacity Benefits (2005) and Models of Sickness and Disability: Applied to Common Health Problems (2010).

Following the article’s publication, Watson – professor of disability research at the University of Glasgow, and director of the Centre for Disability Research – called for DWP to review the evidence used to drive its policies on out-of-work disability benefits.

He told Disability News Service (DNS) that the BPS had “been used to drive the WCA”, and that the government now needs to examine “the evidence that they used to create their policies”.

He added: “I would question very much the foundations that they are built on.”

He pointed out that none of the articles they analyse in their article had been published in peer-reviewed publications – as theirs was – but instead had been self-published or published by “obscure publishing houses”.

He said: “If they really wanted to make their case, they would submit their work to peer review.”

A DWP spokeswoman said the department was not previously aware of the article before it was contacted by DNS, but she added: “We work with experts on disability issues and look at a wide range of evidence when developing policies that will affect disabled people, including the work and health green paper, and we will consider the points raised in this article.”

DWP said the WCA had been developed in consultation with medical and other experts, including groups representing disabled people, and had been subject to five independent reviews.

The department said the PIP assessment was also developed with the help of a wide range of experts, and had been subject to a public consultation and thorough testing, as well as an independent review after its introduction.

And DWP said the authors were not correct to say that the government promotes “the myth that large numbers of claimants are fraudulent” and that “it is the negative attitudes of many ESA recipients that prevent them from working, rather than their health condition”.

Alyward had declined to comment on the article by noon today (9 June), while DNS has so far been unable to contact Waddell.

9 June 2016



UK government set for UN grilling in Geneva over ‘breaches of disability rights’

The UK government is set to face a grilling from UN experts next week over its alleged breaches of international obligations on disabled people’s human rights.

The government will be examined on Wednesday and Thursday (15 and 16 June) by the UN committee on economic, social and cultural rights on its record on issues such as social security, employment, housing, health and education.

The discussions will take place in public, in Geneva, Switzerland, with the committee’s findings likely to be published the following week.

A list of issues published by the committee – one of 10 bodies that monitor the implementation of the UN’s main human rights treaties – shows that among its concerns is the steps the government has taken to ensure that “austerity measures” introduced through the 2012 Welfare Reform Act do not “disproportionately affect” the rights of “disadvantaged and marginalized individuals and groups”, including disabled people.

The committee’s list also raises concerns about the government’s decision to lower the benefits cap and freeze working-age benefits, and its efforts to address the housing crisis.

It also asks what the UK has done to reduce poverty among “the most marginalized and disadvantaged individuals and groups”, and questions “the reliance on emergency food aid from food banks”.

The UK is one of seven countries – including Macedonia, Angola and France – that will be examined by the committee this month, as part of a programme of regular reviews of countries that have ratified the International Covenant on Economic, Social and Cultural Rights (ICESCR).

The UK ratified the human rights treaty in 1976 and was last reviewed over its progress on implementation in 2009.

The Just Fair human rights consortium – whose members include Disabled People Against Cuts, Inclusion London and Disability Rights UK – has submitted an updated report to the committee in the last few weeks, with evidence across the treaty areas, including employment, social security, access to justice, housing and the right to an adequate standard of living.

The consortium highlights the need to focus on the UK government’s social security reforms because of evidence that they have “had a retrogressive impact” on many of the rights in the treaty, particularly for disabled people and children, which “cannot be justified by reasons of economic necessity”.

In its own updated submission to the committee, the Equality and Human Rights Commission (EHRC) suggests that the government’s social security reforms have breached the treaty, while some of them “have had a disproportionate impact on disabled people, women and children”.

It also suggests that the government should do more to consider the impact of policy and legislation on potentially vulnerable groups, while it should also conduct “cumulative impact assessments” of its overall reforms, an action the government has repeatedly refused to carry out.

Among particular concerns, EHRC highlights the move to universal credit, which will see the abolition of the severe disability premium; a 50 per cent cut in financial support to families with a disabled child who receive disability living allowance, affecting around 100,000 disabled children; and cuts of about £40 a week to payments to disabled people in work.

It also warns that cuts to the disabled students’ allowance “could have a negative impact on how disabled students access and succeed in higher education”.

A member of the commission’s treaty monitoring team will be attending the public examination of the UK government.

In its submission to the committee, the disabled women’s collective Sisters of Frida (SoF) warns that the closure of the Independent Living Fund has “put seriously in peril the ability of a large number of disabled people with high support needs to live independently in their own homes and communities”.

It says that the government’s housing policies mean that disabled people are being forced to live in segregated institutions.

Sisters of Frida also highlights the government’s unpopular reforms of the Access to Work scheme; planned cuts of £30 a week to new claimants in the work-related activity group of employment and support allowance; and the barriers faced by disabled women who have experienced domestic violence.

Eleanor Lisney, who wrote the submission with fellow steering group member Armineh Soorenian, said SoF felt it was important for disabled people in the UK to contribute to as many UN human rights mechanisms as possible, because of the government’s attacks on disability rights.

She said: “I think it’s important to raise issues everywhere we can. It’s very much a drip-drip effect; the more we go on about it, the more it accumulates and they can’t just [dismiss it because] it is one report.”

She said she hoped their efforts would pay off when the committee delivers its conclusions at the end of this month, and added: “I hope the UK government gets more than its knuckles rapped.”

Sisters of Frida was asked to put the report together at short notice by the International Disability Alliance.

Lisney is one of 30 international disabled women’s rights leaders who will visit Geneva next month for a convention organised by the disability organisation Women Enabled International for training on how to use the various UN human rights mechanisms – like ICESCR and the UN Convention on the Rights of Persons with Disabilities – to advance the rights of disabled women and girls.

The week-long event will also aim to develop a network of women’s disability rights advocates and allies “who can work together when opportunities arise to shape policy in international bodies advancing the rights of women and girls with disabilities”.

9 June 2016



‘Wake up!’ Baroness Campbell’s plea to disabled people over EU referendum apathy

A leading peer has told disabled people to “wake up” to the reality that they could lose many of their hard-won rights if the UK votes to leave the European Union (EU) later this month.

In an impassioned plea, Baroness [Jane] Campbell begged other disabled people not to abandon the EU, which she said acted as a “double lock” on disability rights.

She told Disability News Service (DNS): “At the moment, our rights are double-locked. If we leave the EU we can kiss goodbye to all the progress we have made on independent living, employment rights and access to information.”

She was speaking after a seminar she chaired in parliament which examined the disability rights case for remaining in the EU.

The seminar was addressed by influential disabled campaigners and “remain” supporters including John Evans, one of the founders of the UK’s independent living movement and a former chair of the European Network on Independent Living (ENIL); the crossbench peer Lord [Colin] Low, a former president of the European Blind Union; and Professor Anna Lawson, who heads the new Disability Law Hub at the University of Leeds.

There was frustration expressed during the seminar that many disabled people had not understood the risks posed by leaving the EU.

Baroness Campbell told DNS that the rights disabled people had secured as a result of Britain’s membership of the EU would not be lost immediately but would gradually “ebb away” if the country voted “leave”.

She said: “The independent living movement for one has worked so hard to bring disabled people together through Europe to fight for our fundamental human rights and we need that [to continue].

“It will not hit us immediately, but over the years, slowly, they will be ebbing away and then we will be on our own, and we know what it is like to be out in the cold, to be segregated from our fellow disabled people.

“Please, please, do not let this happen. Nothing about us without us, and that means in Europe as well as in the UK.”

Baroness Campbell had admitted to the seminar that she had started thinking about the EU referendum only recently, but the more she discovered about the damage that leaving the EU would do to disabled people “the more afraid I become”.

She said that other disabled people around the country had told her they were preoccupied with other campaigns.

But she said: “We are so busy fighting our battles on different fronts that we are not lifting our heads up to see what is going on around us on the bigger stage.”

She said that many disabled people had told her that they would pay attention to the EU issue when their other battles were over, but she told the seminar: “When that’s all over it will be too late.”

9 June 2016



Britain must stay in the EU if independent living is to thrive, says pioneer

The independent living movement will only continue to thrive if Britain stays in the European Union (EU), according to one of its pioneers.

John Evans, one of the founders of the UK independent living movement, told a Westminster seminar that he believed independent living would only continue to develop in the UK if it was still protected by EU laws.

He said that disabled people wanted to “pull down barriers, not erect them” and recognised that discrimination “does not stop at borders”.

Evans was liberated from a Cheshire Home 33 years ago, when he used council funding to set up his own independent living scheme in Hampshire, and has since become a key figure in both the UK and European independent living movements.

He was involved in 1989 – along with disabled people from 19 European countries – in setting up the European Network on Independent Living (ENIL), an organisation he later chaired.

He told the audience of politicians, academics and campaigners who support voting to remain in the EU in this month’s referendum that his involvement in ENIL had had a huge influence on his life, and that he had “personally witnessed the enormous benefits, successes and achievements disabled people in the UK have gained from the EU”.

He said: “I firmly believe that in order for independent living to continue to thrive, we need to be able to do it within the European legislative framework and along with our disabled friends and allies in Europe.”

Evans has been employing personal assistants (PAs) for 33 years, and in that time has employed people from 12 EU member states.

He said a decision to leave the EU would mean such recruitment would no longer be possible, and so would “restrict thousands of disabled people” looking for PAs, which was “already a big problem in this country, particularly in many rural areas”.

He said that if the UK left the EU, thousands of other disabled people who use PAs from other EU member states would find it increasingly difficult to find the staff they needed.

He said: “Disabled people in the UK have simply too much to lose if we leave the EU, and personally I am horrified at the very thought of it.

“We want to protect Europe’s very significant achievements for disabled people, and prevent others from being taken away from us, and provide a platform for the further improvements for our future.”

The seminar was supported by the Britain Stronger in Europe campaign, and was chaired by the disabled crossbench peer Baroness [Jane] Campbell.

Evans described how another disabled person told him last month that the EU had done nothing to challenge austerity in Europe, but he said he had corrected her by pointing to a coalition formed four years ago by ENIL, which included the European Disability Forum, Inclusion Europe and members of the European parliament, and which provided a “united voice” against the impact of austerity measures.

He said: “This work is still going on and it is important it does on a European level and that we are part of it.”

Evans said that disabled people in Britain had been seen as “pioneers” of independent living in Europe, because of their many campaigning successes and progressive legislation such as the Community Care (Direct Payments) Act and the Disability Discrimination Act, while other EU countries had struggled to secure such legislation.

He said: “We want to continue to play this important, influential role in Europe, which is why it is so vital we remain within the EU.”

Evans also pointed to funds from the European Commission and the EU’s European Social Fund that have been used to strengthen independent living networks and set up projects for disabled people in the UK.

He said: “If we leave the EU we would not have access to this funding mechanism, which would restrict independent living possibilities at a time when resources are very scarce for supporting this work in the UK.”

9 June 2016



EU laws ‘have played crucial role’ in fight for disability rights

Disabled people have been urged to recognise the importance of the European Union (EU) in maintaining and building on their rights, across areas such as access to information, transport and accessible goods and services.

The call for disabled people to vote to remain in the EU in this month’s referendum came at a Westminster seminar chaired by the crossbench disabled peer Baroness [Jane] Campbell.

The seminar was addressed by influential disabled campaigners and “remain” supporters including John Evans, one of the founders of the UK’s independent living movement and a former chair of the European Network on Independent Living; the crossbench peer Lord [Colin] Low, a former president of the European Blind Union; and Professor Anna Lawson, who heads the new Disability Law Hub at the University of Leeds.

It took place a day after a letter in The Times, signed by more than 50 peers, MPs, activists and academics – including Baroness Campbell, Lord Low, and fellow disabled peers Baroness [Tanni] Grey-Thompson, Baroness [Sal] Brinton and Baroness [Celia] Thomas – explained that leaving the EU would create a “bonfire” of disabled people’s “hard-won rights”, while a post-Brexit Britain would see disabled people “banished to the margins of British life once more”.

Lord Low told the seminar that disabled people who were too busy fighting other campaign battles to pay attention to the referendum should realise that it was “one of the most momentous decisions they will face in their lifetime”.

He said that being a member of the European single market had had a significantly positive affect on disabled people.

He said: “I would argue that we were able to achieve a great deal for disabled people [as a result of various EU mechanisms] that we simply could not have achieved at national level.”

He pointed to three pieces of European legislation that have had, or will have, a significant positive impact on disabled people in the UK.

He said that EU policies on procurement by public bodies, such as local authorities and government departments, offer a “substantial lever” to improve the accessibility of goods and services.

He also pointed to draft EU rules on the accessibility of public sector websites, which have been agreed despite “strong resistance from national governments who delayed progress for almost two years”.

The EU Directive on Web Accessibility for Public Sector Websites will mean that new websites and mobile phone apps of all public sector organisations will have to be accessible, while existing sites will have to be updated.

Lord Low also pointed to the proposed European Accessibility Act, which was published in draft form last December and will outlaw discrimination faced by disabled people in accessing key products and services, encouraging investment in accessible goods and leading to consistent standards across the EU.

Legislation like this, he said, will only be possible if we remain in the EU, because the UK government would never introduce such laws if the country voted to “leave”.

Professor Lawson told the seminar that EU law “plays a really crucial part” in “enabling and entitling disabled and older people to travel and get about”.

She said the EU’s Air Passengers Regulation was “a really good example of the benefits to the UK of being in the EU”.

The regulation means transport operators have to assist disabled passengers travelling by air through the EU, with similar obligations for travel by train, ship, and buses and coaches, while disabled people’s parking badges receive mutual recognition across the EU.

Before the regulation, she said, air travel was “a nightmare” as it was not covered by UK discrimination laws, because of its international dimension.

She said: “I had people saying, ‘We can help you as far as the check-in desk, but then you’re on your own.’

“I cancelled flights because I couldn’t risk being left on my own.”

Tara Flood, chief executive of The Alliance for Inclusive Education (ALLFIE), told the seminar that her organisation had twice benefitted from EU funding, which had allowed ALLFIE to build “fantastic collaborative relationships” with other EU countries to campaign for an end to segregated education and move towards an inclusive education system.

9 June 2016



EHRC commissioner calls on sports bodies to act on disabled board members

The equality watchdog’s disability commissioner has called for the country’s major disability sports organisations to take action over the “disappointing” number of disabled people on their boards and among their paid staff.

Lord [Chris] Holmes, himself a retired, record-breaking Paralympian and now disability commissioner for the Equality and Human Rights Commission, spoke out after a Disability News Service (DNS) survey showed that only one of 11 national disability sports organisations was run and controlled by disabled people.

The survey showed that only one of the 11 had increased the proportion of disabled people on its board since the last survey in 2013, while just 27 of their 163 employees (16.6 per cent) consider themselves to be disabled people.

The British Paralympic Association (BPA), which manages Britain’s Paralympic team, has just one disabled board member out of nine, the same number it had three years ago.

And just three of BPA’s 33 paid staff say they are disabled people, according to its own internal survey.

Lord Holmes said: “There is a vast pool of talented disabled people in the UK who would excel in these positions, from the many sportswomen and men who have competed at the highest level in international sport, to those leading in business and the arts.

“It is therefore disappointing to find stagnation, and in some cases, reductions in the numbers of disabled people on the boards of UK disability sports organisations.

“Changes clearly have to be made to bring more disabled people into these roles.”

He also expressed disappointment about the proportion of disabled people employed within the organisations.

Keryn Seal, a key member of the British blind football team, who competed at the London 2012 Paralympic Games, also called for change and said he was particularly alarmed by the board numbers.

He said: “You would think that some of them would be people who were disabled, people who have been there and done it.

“It means they are not having any kind of guiding or steering effect on where the sport goes in the future.”

Seal said the lack of impetus for change could be because it would not be in the interests of current board members, as “turkeys don’t vote for Christmas”.

But he also said that “athletes are inherently quite selfish” and prefer to concentrate on playing and competing, rather than running their sport, while “a lot of people don’t put their head over the parapet”.

He suggested that the bigger organisations, such as BPA, “should be creating schemes where they can build leaders of sport”, for example by running training schemes or allowing disabled athletes and retired athletes to shadow existing board members.

He said: “I would love them to be the catalyst for a change in attitudes. They are the ones that set an example of governance [for other disability sports organisations].

“If they were to lead the way, I think other disability sports would follow suit. They have had time to do that.”

His sport is run by the mainstream Football Association at the elite level, but British Blind Sport – which has two disabled board members out of six – has an involvement at grassroots level.

Seal said: “I would love to be able to drive my sport for the future when I am finished, either at international or grassroots level.”

He said he would also like to be involved in the FA’s inclusion advisory board, and added: “I would love to help change policy in the future.”

Seal suggested that the issue of disabled people on boards was at the same stage that the issue of women on boards was at 20 years ago.

Other Paralympians have so far been less keen to comment on the survey.

One retired Paralympian said on Twitter that he had been “shouting for years” about the issue, but he has so far been unwilling to expand on his comment.

Many other Paralympians have declined to comment this week.

The agent for one high-profile Paralympian said: “Unfortunately this doesn’t fit with our PR strategy for A* in the build up to the Paralympics.”

A BPS spokeswoman said: “The election process for the British Paralympic Association board takes place once every four years.

“The skills and experience required for board members is important, they are responsible for a world leading National Paralympic Committee taking upwards of 250 athletes to the Rio Paralympic Games.

“The next set of elections for the BPA board will take place in 2017 and we welcome a wide and diverse set of candidates for those positions.”

*DNS has chosen not to name the athlete concerned

9 June 2016



Concerns over watchdog’s ‘alarming’ inspection cancellation figures

Disabled campaigners and politicians have raised serious concerns about the social care inspection regime, after last week’s revelations that the number of cancellations and postponements rose by more than 360 per cent in just one year.

The Care Quality Commission (CQC) has so far refused to say why the number of inspections of adult social care services that were cancelled or rescheduled rose so sharply from April 2015 to April 2016.

The figures – revealed by CQC after a freedom of information request by Disability News Service (DNS) – show 25 inspections were cancelled in April 2015, rising to 103 in April 2016, while the number of inspections rescheduled increased from 25 in April 2015 to 130 in April 2016.

Despite CQC’s refusal to explain the rise, the Department of Health (DH) was in disarray this week, suggesting at one point that “ultimately the cancellations are a result of funding and fee issues, of which we would not comment”.

But when DNS tried to clarify how the fees CQC charges care services to be regulated was connected with a rise in the number of cancelled inspections, a DH spokeswoman said she was “not attempting to make a direct link between funding and cancellations”, and then that it “would be both incorrect and wrong to quote me as suggesting that fees and funding are linked”.

Despite the continuing refusal of both DH and CQC to explain why cancellations and rescheduled inspections have risen so sharply, disabled campaigners and politicians have suggested that the figures pose serious questions about the way CQC is being run.

Professor Peter Beresford, co-chair of the service-user network Shaping Our Lives, said there had been concerns ever since CQC replaced its predecessor organisations about whether it was well-funded enough to “make possible the sensitive and thoroughgoing regulation that the human services for which it has responsibility demand”.

Beresford said CQC had continued to make news “for all the wrong reasons” since its launch.

He said this may reflect “the worrying state of social care more generally” but that the cancellation figures provided “no reassurance” that CQC was able to take on the “increasingly difficult and important role it has to play across social care and health”.

He said: “Perhaps a root and branch review is now needed and one that puts service-users and carers more strongly at the centre of its operation – rather than apparently weakened, as its poor handling of the Experts by Experience issue has suggested.”

Jonathan Bartley, the Green party’s work and pensions spokesman, who is standing alongside Caroline Lucas in a job share to lead the party, said CQC’s regime of adult social care inspection “appears to be disintegrating”.

He said: “The potential impact that so many cancelled inspections will have on rooting out abuse and other poor practice in places where so many people are potentially vulnerable is alarming.”

Labour’s shadow minister for social care, Barbara Keeley, also raised concerns after being shown the figures by DNS.

She said: “It is worrying to see such a significant increase in the number of CQC inspections being cancelled and rescheduled.

“These cancellations, especially if they are last-minute, can be disruptive to staff and to service-users.

“We need an effective body to root out abuse and raise quality standards in social care.

“Ministers need to reconsider the cuts they are making to the CQC’s budget and whether this is impacting on the organisation’s ability to do its job properly.”

The freedom of information request was originally submitted by DNS in an attempt to discover the impact of changes to CQC’s troubled Experts by Experience (EbE) programme.

Earlier this year, three of four new contracts to run the EbE programme – in which people with experience of using services accompany CQC inspectors on their visits – were handed by CQC to Remploy, the disability employment business formerly owned by the government but now mostly owned by the scandal-hit US company Maximus.

In February, DNS reported that these contract awards had led to confusion, chaos and a stream of resignations by Experts, particularly over Remploy’s decision to slash their hourly rates of pay.

The CQC figures show that inspections that were cancelled or rescheduled as a result of “insufficient non-CQC resources” (which includes those where there were problems finding Experts to take part) rose from six in July 2015 to 26 in April 2016, an increase of more than 330 per cent.

Sue Bott, deputy chief executive of Disability Rights UK, said she believed the Experts by Experience programme had been “corrupted to fit in with austerity budgets”, while the “spirit and purpose of the programme has been lost”.

Bott led the National Centre for Independent Living when it developed the programme with CQC’s predecessor, the Commission for Social Care Inspection, working with local disabled people’s organisations (DPOs), which she said was “still the best way of running a programme like this”.

She said: “A number of DPOs including ourselves and Spectrum sent a letter of concern about the last tendering process to CQC, but our concerns were not addressed.

“Experts have to be locally recruited and supported in the community. This work is not suitable for large national contractors.”

She added: “I’m not surprised people feel let down and no longer want to have anything to do with it.

“It’s not just a question of recruiting experts but also providing support during and after the inspection.

“If this doesn’t happen then many people are excluded from being able to take part.

“The hourly rate is a crucial principle to get right as it reflects respect for the expert. Lowering the fee undermines this principle.”

Last week, journalist and former Expert by Experience Claire Bolderson wrote in her blog that the Remploy part of the EbE programme was “in chaos”, with Experts “leaving in despair”, emails going unanswered, and some Experts being asked to travel “absurd distances” to inspections, while senior Remploy staff had apparently been told by CQC in April that “the company was ‘non-compliant’ in almost a dozen areas”.

Meanwhile, the Commons public accounts committee has warned that the Department of Health (DH) is not doing enough to safeguard the interests of disabled adults and other service-users receiving personal budgets for social care.

Its report was published against a background of increasing demand for adult social care, but a real terms fall in spending by English local authorities.

The committee concluded that it was “not assured that local authorities can fully personalise care while seeking to save money, and are concerned that users’ outcomes will be adversely affected”.

It criticised DH for its “complacent” response to concerns about social care funding, as it had told the committee that this had been addressed through the spending review process, which introduced new powers for local authorities to raise council tax by an extra two per cent to increase social care funding, and provided extra money through the Better Care Fund.

The committee also warned that adults who receive council-funded social care “are not yet getting the support they need consistently in order to get the most out of personalising their care”.

And it pointed out that DH does not believe that “everyone counted by local authorities as having a personal budget does actually have genuine choice and control over the services they receive”.

The report calls for more research to show how local authorities can implement personal budgets “to maximise benefits to users”.

The previous day, the Commons communities and local government committee launched an inquiry – and an appeal for written evidence – into “the financial sustainability of local authority adult social care and the quality of care provided”.

Clive Betts, the committee’s chair, said that adult social care was “coming under increasing pressure as a result of growing demand and declining local authority budgets”.

He said: “Our inquiry will look at the financial sustainability of this care and support to see what can be done to allow councils to continue to meet their legal obligations for future generations.”

9 June 2016



SEN stats ‘suggest many councils are struggling with funding’

New official figures highlight grave concerns about the impact of the government’s special educational needs and disability (SEND) reforms on disabled children, according to a leading campaigner.

The figures show that some local authorities are lagging far behind others in implementing the government’s reforms.

Under the reforms, which came into effect in September 2014, following the Children and Families Act, local authorities in England have until April 2018 to move all disabled children eligible for support from SEN statements to new education, health and care plans (EHCPs).

The plans will last from birth to the age of 25 and set out all the support a family should receive across education, health and social care.

But the new Department for Education (DfE) statistics show a huge difference between local authorities in how quickly they are implementing the reforms, with some councils far more likely to be providing their disabled pupils with old-style statements instead of EHCPs.

One of the worst-performing local authorities is Tory-run Westminster, which – by January 2016 – had set up just 30 EHCPs, compared with maintaining 1,005 SEN statements, with just 1.1 per cent of children with statements issued with a replacement EHCP.

Labour-run Derby City Council had produced only 70 EHCPs and still had 1,200 statements, with just 3.1 per cent of children with statements issued with an EHCP.

These figures compared with Nottinghamshire County Council, which only had 675 disabled children with statements but 1,170 with EHCPs (and more than half of children with statements moved on to EHCPs), and City of York Council, with 190 statements and 380 EHCPs (and 63.4 per cent moved on to EHCPs).

There were also huge differences in how long families had to wait for their EHCPs, with only 8.3 per cent of EHCPs issued within the necessary 20 weeks by Oldham council, and 17.4 per cent in Kingston upon Hull.

This compares with 92.9 per cent in Nottinghamshire, and 99.1 per cent in Bedford.

Tara Flood, chief executive of The Alliance for Inclusive Education (ALLFIE), said she believed the figures show that many councils are struggling with education funding, partly because a significant number of disabled young people who previously were too old for statements are now eligible for EHCPs.

Flood said she believed that the government’s reforms will cause the number of disabled children in mainstream school to “decline sharply”.

ALLFIE is being approached by three or four parents a week concerned that their children are seeing a reduction in their support during the implementation of EHCPs.

Children who previously had statements are now being awarded lower levels of support under EHCPs, she said, with both schools and local authorities blaming the government’s reforms, and some families being told their child is no longer eligible for any support.

Flood warned that there had been little attempt to gather evidence on what was happening to the amount of support being offered to disabled children and young people as a result of the reforms.

Last week, educational support organisation The Key revealed that a survey of more than 1,100 school leaders showed than eight in 10 schools across England and Wales had insufficient funding to provide adequately for their disabled pupils, while almost nine in 10 school leaders had seen the support they receive for these children “affected detrimentally” by cuts to council services.

A Department for Education (DfE) spokeswoman said: “Just 20 months ago, we made fundamental changes to the way the SEND support system works for families – the biggest in a generation.

“These figures show that overall, since the introduction of our reforms, 74,000 young people with SEND now have EHC plans – clear signs that we are on track and progress is being made.

“Councils are learning new ways of working under the new assessment process, and we know there is still progress to be made to get this new system fully embedded.

“These figures were collected in January and therefore do not show the current picture.

“We are using this data to monitor how well councils are implementing their new duties, and to target the challenge and support we give them.”

DfE said it was investing £45 million between 2014 and 2017 in providing “independent supporters” in every area to help parents and young people “navigate the EHC needs assessment and plan process”, as well as funding an implementation grant of £35.8 million for local authorities.

Ofsted and the Care Quality Commission will assess how effectively local areas are working together to implement the Children and Families Act, with all local areas to be inspected over the next five years, while DfE said it would also work with the Department of Health and NHS England to help “spread good practice as well as bring about necessary improvements”.

9 June 2016



Report finds support for efforts to find a social model of mental distress

Most mental health service-users are still deeply divided about identifying with the social model of disability, but still favour moving away from the medicalised attitude of professionals and towards a more “social” approach, according to a new report.

The user-led research aimed to investigate how a more “social” approach to thinking about mental distress could be developed, in the face of the traditional medical model that dominates the views of both the public and professionals.

Most of the service-users interviewed for the report said they believe that the medical model approach leads to an “over-emphasis on drug treatments”, and is “stigmatising and damaging”.

Although the government has pledged to secure “parity of esteem” for mental health with physical healthcare, there is concern at a growing crisis in services, an increasing use of compulsory treatment, a large number of service-users in prison, a low number with jobs, and “continuing high levels of suicide and self-harm”, the report says.

The report says that the big mental health charities like Mind, Rethink and the Mental Health Foundation (MHF) need to look “much more critically” at their insistence on sticking to “medical understandings of mental distress which many service users find damaging and unhelpful”.

It also says that mental health system survivors interviewed for the research gave a “very mixed response” to the anti-stigma campaigns like Time to Change, which have secured “major public and political interest”.

The report, From Mental Illness To A Social Model Of Madness And Distress, was funded by the Joseph Rowntree Foundation, and was published this week by two service-user organisations, Shaping Our Lives (SOL) and the National Survivor User Network (NSUN).

The report was written by four researchers with personal experience of the mental health system: Peter Beresford, Rebecca Perring, Mary Nettle and Jan Wallcraft.

They conclude that “social approaches” are likely to have “massive traction with mental health service users/survivors, but not if they are narrowly based on the social model of disability”.

Views on the social model – which argues that disability is caused by barriers in society – are still “polarised”, six years after the first stage of the research project concluded that “further discussions about more social approaches to mental health were needed”.

Mental health system survivors are “particularly divided” about the social model idea that disabled people have an impairment that is separate to the disability they face.

The report, launched at a joint NSUN and SoL event in Birmingham yesterday (8 June), says: “There is an irony in that disabled people developed the social model to escape from the prevailing medicalised individual model of disability, but for some survivors, the concept of impairment feels like a re-imposition of a medical model on them which treats their experience like a physical or chemical problem.”

One survivor told researchers: “I wouldn’t accept that I have an impairment or a disability, because I feel that my problems are caused by childhood… and a dysfunctional family.

“That doesn’t mean that I am now disabled, I think that’s a nonsense for me, it makes no sense.

“But it does mean that I have mental health needs and that I can’t engage in the workplace in the way that other people can for various reasons.”

But many survivors still believe it is “possible and helpful” to support the broader disabled people’s movement, while “retaining their own distinct identity as mental health service users”.

One said: “I strongly agree, because so far all social justice work (which is a crucial part of the social model) has been undertaken by physical disability activists.

“Mental health has been riding on its coat tails. I do identify as disabled.”

One of the suggestions that came from participants in the research was that a benefits system based on a social approach would “reduce rather than reinforce stigma and the negative stereotyping of mental health service users and challenge rather than add to the hostility and discrimination they face”.

They also highlighted the importance of moving towards a system which “values people experiencing distress and their potential contribution, for example, through voluntary work and community involvement”.

One of the report’s recommendations is for “adequate and secure funding” for smaller, user-led organisations, which tend to encourage the involvement of service-users and “show a greater understanding” of social approaches to explaining mental distress.

Beresford, SOL’s chair and emeritus professor of social policy at Brunel University, said he believed the research showed the need for survivors to be given opportunities to work together to reach an understanding about a new model.

He said that psychiatric provision was still largely stuck in the past, with a “medicalised” approach.

He said: “All the talk [from professionals] is, ‘We will get it cracked with bio-medical or related approaches’… and it ain’t working.

“I still think the lesson of the last decade is we are on the wrong track and that is what people are saying here.

“They do feel we need a much more social model and we need to move away from a narrow bio-medical one.”

And he said that the big mental health charities like Mind, Rethink and MHF needed to think again about their own approaches.

He said: “Mind has got close to government, for example in relation to policy formation.

“All of those organisations are signed up effectively to a biomedical model of distress which people we have spoken to now on two occasions… say is inherently problematic.”

9 June 2016


News provided by John Pring at www.disabilitynewsservice.com