Tory conference police force admits sharing information on protesters with DWP
Disabled activists have demanded an inquiry after a police force that has patrolled four Conservative party conferences since 2010 admitted sharing information about protesters with the Department for Work and Pensions (DWP).
Greater Manchester Police (GMP) has now become the second police force to admit sharing information about people taking part in protests with DWP, following a similar admission by Lancashire police.
But GMP has also admitted having a “sharing agreement” with DWP, even though the department explicitly stated two months ago that it had no such arrangements with any police force.
The admissions have followed claims reported by Disability News Service (DNS) that police forces have been targeting disabled protesters taking part in peaceful anti-fracking protests across England.
Lancashire police then admitted in December that it had shared both information and video footage of disabled anti-fracking protesters with DWP, in an apparent attempt to have their disability benefits removed.
Last month, DWP refused to say – in response to a DNS freedom of information request – which police forces had passed it information about claimants of disability benefits who have taken part in anti-fracking and anti-austerity protests.
But Greater Manchester Police has now told DNS that it passed DWP information – but not video footage – about protesters taking part in the anti-fracking protests at Barton Moss, Salford.
Those protests took place in 2013 and 2014, but the force also confirmed that it has shared information with DWP from protests not connected with fracking.
This raises concerns that it has passed information to DWP about disabled people who protested in Manchester about the government’s austerity-related social security reforms, particularly high-profile actions in 2015 and 2017.
In 2017, disabled activists from the Disabled People’s Direct Action Network (DAN) and Disabled People Against Cuts (DPAC) criticised “heavy-handed” police tactics at a direct action protest that blocked tram lines outside the conference.
The Tory party is due to return to Manchester in September for this year’s annual party conference.
Andy Greene, a member of DPAC’s national steering group, said: “Using the cover of suspected benefit fraud as a shroud for the targeting of disabled activists is outrageous.
“These are public services and should be deploying every resource they have to support disabled people to be active and engaged citizens.
“Yet, what we see is the use of those resources deployed against disabled people as if we are enemies of the state.
“Violence, the weaponisation of hunger, the ‘grave and systemic violations of disabled people’s human rights’ – this is what we are experiencing at the hands of the police, the DWP and other public services every day.”
He added: “There needs to be an inquiry into what’s gone on; and where wrong has been done, people have to be held to account.
“Who made the decisions within these services to share this information, when, how were these decisions justified?
“Disabled people need to be shown – not words – that they are safe to take part in protests, demonstrations, campaigning and activism without the threat of police violence or having their benefits and services taken away.
“The policing of disabled people by the very services designed to empower and enable us is a dangerous road to go down.”
Dennis Queen, who lives in Manchester and was arrested at the 2017 protest for public disorder but was later found not guilty, also backed calls for an inquiry.
She said she did not understand how the police could lawfully know who was claiming disability benefits.
She said: “In the same vein I don’t understand what business it is of the DWP if a person decides to attend a protest.
“As far as I am aware there are no questions in benefit claims about attending protests.
“There is no rule that claimants may not attend protests for us to be breaking. If there is then we ought to have a right to know about it.
“I can only assume this is being done to cause a chilling effect and make disabled people afraid to protest. As such, it’s an informal ban on protesting against disabled people.”
Three other police forces that have been involved in policing anti-fracking protests over the last six years – Sussex, Surrey and North Yorkshire – have told DNS that they have not passed on information about protesters to DWP.
A Greater Manchester Police spokesperson said in a statement: “As part of a sharing agreement, information about protestors has been passed to DWP but only in the event where concerns have been raised.
“During the course of our duties, whether this is at protests or not, if any concerns are identified, we are duty-bound to pass these onto the relevant partner agencies in any policing operation.
“No-one is deterred from taking part in protests or exercising their right to free speech.
“As with any operation, a strategy is put in place in order for us to facilitate peaceful protests with as little disruption to the local area as possible.
“The sharing of information is a useful tool for both us and our partners, helping us to build greater intelligence pictures, identify areas of concerns and work better with the communities we serve.”
A force spokesperson later added: “Information was passed to DWP in relation to the Barton Moss protests.”
She said that the raising of concerns that lead to information being passed to DWP are those “identified from intelligence gathering before all protests, reports made by the public and information passed on by police officers on the ground”.
The spokesperson also confirmed that information had been passed to DWP about both anti-fracking and non-fracking-related protests.
It is not yet clear which other protests have led to information being passed to DWP by Greater Manchester Police.
A DWP spokesperson said: “There is no formal arrangement in place between DWP and any police force for this or other similar scenarios.”
She had not said by noon today (Thursday) whether this meant her department was accusing Greater Manchester Police of lying about its “sharing agreement” with DWP.
She also refused to say if the minister for disabled people accepted that this exchange of information with GMP risked creating a more hostile environment for disabled people who receive benefits.
She also refused to say if Newton accepted that there would be grave concerns over the possible sharing of information with DWP by GMP from anti-austerity protests that were critical of DWP and its policies at Tory party conferences in Manchester.
14 February 2019
Ministers block release of ‘no deal Brexit’ social care recruitment plans
Ministers are refusing to release information that would show what extra plans – if any – the Department of Health and Social Care (DHSC) has put in place to deal with an adult social care recruitment crisis in the event of a “no deal Brexit”.
With just 43 days until Britain faces the possibility of leaving the European Union without a deal in place, DHSC claimed that “premature” release of the information could put at risk “effective policy formulation and development regarding our exit from the EU”.
Instead of releasing its records, it has pointed to “high level” plans published just before Christmas, but they suggest that ministers have no plans in place to deal with an adult social care recruitment crisis.
Disabled people who use personal assistants (PAs) have warned repeatedly of the risk that any form of Brexit could mean their access to PAs from EU countries could dry up, with a no-deal Brexit making this even more likely.
Inclusion London said in December that the impact of Brexit on social care recruitment was “potentially disastrous”.
The refusal by DHSC to release the information came in response to a freedom of information request from Disability News Service (DNS).
Health and social care secretary Matt Hancock has already laid out some plans, including a national recruitment campaign to “raise the image and profile” of the adult social care sector, which was launched this week, but these will go ahead regardless of the Brexit outcome.
The adult social care green paper – which has been postponed yet again because of the government’s Brexit struggles – is also set to look at how to “recruit and retain a valued workforce”, says DHSC.
But DNS has been trying since November to discover from DHSC whether Hancock has put any specific plans in place to deal with a possible recruitment crisis in adult social care if Britain tumbles into a no deal Brexit.
Evidence Hancock gave to the Commons health and social care committee in November suggested he had no such plans, but his department subsequently refused to confirm that this was the case.
Following Hancock’s evidence, DNS asked through a freedom of information request what recorded information the department possessed on preparations it had made for dealing with recruitment into the social care sector in the event of a no deal Brexit.
DHSC says in its response that it does hold information “relevant to your request” but is relying on an exemption under section 35(1) of the Freedom of Information Act, which allows it to refuse to release information “relating to the formulation and development of government policy”.
Guidance from the Information Commissioner’s Office makes it clear that a government department can only rely on this exemption “if the public interest in maintaining the exemption outweighs the public interest in disclosure”.
DHSC says in its response that “premature” disclosure of the information – just a few weeks before Brexit – “could prejudice effective policy formulation and development regarding our exit from the EU”.
It adds: “We feel that the public interest would be better served by protecting effective policy making as we continue to negotiate our exit from the EU/prepare for all EU exit scenarios.”
But the disabled peer Baroness [Celia] Thomas, disability spokesperson for the Liberal Democrats, said the DHSC refusal “suggests that there is no plan if there is a ‘no deal Brexit’”.
She said: “This just confirms our worst fears that, in the event of no deal Brexit, there will simply not be enough personal assistants to help disabled people live their lives properly if those from Europe stop coming, or those that are here go home.
“This is a shocking state of affairs, which the government must face up to. It is not good enough just to hope for the best. They must take urgent action.”
The DHSC response does direct DNS to its “high-level plans”, which were published four days before Christmas and include letters to adult social care providers and commissioners about the government’s plans in the event of a no deal Brexit.
They also include the department’s “Brexit operational readiness guidance for the health and care system in England”, which again deals with action that should be taken in the event of the UK leaving the EU without a deal.
But the letters and guidance suggest that while DHSC has put into place a series of contingency plans for the NHS, some of which would also support the adult social care sector in the event of a no deal Brexit, it has done nothing to prepare for a possible social care recruitment crisis.
In a letter to adult social care providers, Sir Chris Wormald, DHSC’s permanent secretary, says: “To ensure you are as prepared as possible, we encourage all social care providers to have fully up to date and robust contingency plans for the possible implications for a ‘no deal’ EU Exit.”
But on workforce issues, his letter merely points providers to the government’s EU settlement scheme, which protects the rights of EU citizens already living in the UK, and which will apply whether there is a deal or not.
He also encourages providers to provide data on their workforce to a national scheme more regularly than they would usually do, as this “provides an important source for our national workforce risk assessments and we will be drawing data from it on a regular basis throughout the first six months of ”.
In his letter to local authority chief executives and directors of adult social care, Sir Chris encourages them “to work closely with your adult social care providers… to assure yourself that any impact on providers can be managed locally”.
And he reminds them of “the importance of having robust contingency plans in place so that the duty to ensure continuity of services can be met”.
He adds: “I know that Local Authorities’ contingency plans will take into account the potential effects from a ‘no deal’ EU Exit scenario and you will be considering the impact on vulnerable people who use adult social care services.”
He says DHSC will “work closely” with the Local Government Association and the Association of Directors of Adult Social Services to support councils in this work and “ensure that activity is co-ordinated nationally across the health and care system”.
But he provides no suggestions for what steps DHSC has taken or will take to deal with the impact of a no deal Brexit on adult social care recruitment.
DHSC’s Brexit operational readiness guidance, also published on 21 December, focuses heavily on health and the NHS.
In the workforce section, it merely says: “The current expectation is that there will not be a significant degree of health and care staff leaving around exit day.
“Organisations can escalate concerns through existing reporting mechanisms to ensure there is regional and national oversight.”
Despite this optimism, in an annex laying out suggested actions for NHS providers, the guidance warns them to “consider the implications of further staff shortages caused by EU Exit across the health and care system, such as in adult social care, and the impact that would have on your organisation”.
A DHSC spokesperson refused again to say what extra plans – if any – DHSC has put in place to deal with a possible adult social care recruitment crisis in the event of a no deal Brexit.
He suggested that DNS could ask for an internal review of the department’s freedom of information response. DNS has already asked for such a review.
14 February 2019
MPs hear of ways to save benefit claimants from harm… or even death
Disabled activists and shadow ministers at a parliamentary meeting have been told of ways they could help to reduce the appalling damage caused by the government’s hated “fitness for work” assessment and other social security cuts and reforms.
Academics, researchers, politicians and campaigners spoke at yesterday’s (Thursday’s) meeting, which was hosted and organised by Labour’s shadow chancellor John McDonnell as part of a lobby of parliament.
The First Do No Harm lobby focused on the continuing refusal of ministers to ensure that sufficient medical evidence is gathered before decisions are made on claims for out-of-work disability benefits, particularly for people with mental distress.
Years of research has shown that deaths of claimants have been closely linked to the failure to ensure this further medical evidence is obtained.
A series of speakers described the continuing harm – including deaths – caused to disabled people by the work capability assessment (WCA) process and the sanctioning of claimants.
Labour shadow ministers said they would shortly be launching a consultation on designing a new social security system that has “respect at its core and treats people with dignity”.
This will include scrapping the WCA and the personal independence payment assessment and replacing them with a personalised assessment process and putting an end to the privatisation of the assessment process through companies like Atos, Maximus and Capita.
But two speakers also suggested that there was crucial short-term action that could be taken to save the lives of disabled people before any change of government.
John McArdle, co-founder of Black Triangle, delivered a presentation on behalf of Edinburgh GP Dr Stephen Carty, the campaign’s medical adviser.
Dr Carty said he often includes a written warning at the bottom of the Med 3 form that GPs must fill out when someone is not well enough to work – known as the fit note – that the patient would be “at substantial risk of a deterioration in their physical and/or mental health” if found fit for work or work-related activity after a WCA.
He said he adds: “If a decision is made not to award this claimant benefits and there is a significant adverse outcome I will report the medical decision maker to the General Medical Council.”
He has to take this step because there is no other system in place to do so, he said.
He added: “I have lost count of the numbers of evictions [and] drug and alcohol relapses whilst in recovery and medical catastrophes related to adverse benefit decisions.”
Dr Carty said that both the Med 3 form and the claim form for out-of-work disability benefits should be amended to ask the claimant’s GP directly – in every case involving a sick or disabled claimant – if there would be a substantial risk of harm if the claimant was found fit for work or to be able to carry out some work-related activity.
McArdle told the meeting that this was a human rights issue that “ought in a civilised society to transcend all forms of party politics” and that MPs needed to work on a cross-party basis to introduce such a change.
He hopes this change could now come through pressure from an early day motion and a private member’s bill.
He told the meeting: “I don’t think anybody reasonably can deny the direct link between the WCA and people dying in destitution and from suicide.
“We need to work together to get more than half of these MPs to say enough is enough. This must happen.”
Rick Burgess, of Greater Manchester Coalition of Disabled People and Recovery in the Bin, detailed four ways in which campaigners could immediately save lives and reduce some of the harm being caused to disabled benefit claimants by taking action at local level.
The first, he said, was to talk to local Department for Work and Pensions (DWP) and jobcentre area managers, and MPs, councillors and council officers, about sanctions that have been imposed and “see what wiggle room there might be” to reduce or remove them.
He said: “The product of most of those conversations has been not a big reduction but a reduction.” Every one of these conversations could result in a life saved, he said.
Secondly, campaigners can put pressure on local councils not to cut their welfare assistance schemes – if they still exist – and can raise awareness of such schemes.
A third measure, he said, was to provide and raise awareness about advice and advocacy, help people to record their benefit assessments, and accompany them to their assessments and appeals.
He said that recording benefit assessments, where possible, was the “single best thing to improve the quality of the assessment” because the assessors then “feel less free to defraud you”.
He said: “The tip of the spear of the DWP assault on us is the assessments.
“If you get people helped at the assessment stage you may be saving them from a lot more trouble down the line.”
And, he said, as a result of council tax benefit cuts there now needed to be more joined-up work on “how to deal with the council tax you can’t pay”.
Burgess also said there was no assessment phase under the new universal credit benefit system, so people who were not able to work were now being sanctioned while waiting for their WCA, or their claims were being closed.
He said: “In Manchester, we have had examples of people in a psychotic crisis expected to attend work interviews.”
They fail to attend, are sanctioned, lose their flat and end up living on the street, he said.
He added: “It gets cold, they are dead on the street. 50 dead bodies this winter*. 50! That’s happening.”
Again, he said, jobcentres can be approached to use their discretion to waive universal credit sanctions as a harm reduction measure.
Gill Thompson told the meeting how her brother David Clapson had died in July 2013 from an acute lack of insulin, three weeks after having his jobseeker’s allowance sanctioned.
Because he had no money, he couldn’t afford to pay for electricity that would have kept the fridge where he kept his insulin working, in the height of summer, and he had also run out of food. He had just £3.44 left in his bank account when he died.
She told those at the meeting, some of whom were close to tears: “David should not have been sanctioned. They say that sanctions are a last resort, but he missed two meetings and he died.
“What upsets me more is that people are still dying.”
Thompson said: “He was struggling and he turned to the state for help and he didn’t get any.
“I just don’t understand how this can happen. Sanctions should not be allowed.
“I do feel that if he hadn’t been sanctioned, he might still be here. I don’t know, but he might still be here.”
Denise McKenna, from the Mental Health Resistance Network and Disabled People Against Cuts, said there were a “whole host of reasons” why self-reporting your own medical evidence as part of the WCA process was difficult for people with mental health problems.
But she also pointed out that mental health care itself was “a shambles”, with the idea of work as a cure now “deeply embedded in the psychiatric system” and the trust between mental health service-users and the psychiatric profession “almost completely collapsed”.
She said society was now seeing a similar abuse of psychiatry to the gay conversion therapies practised in the 1960s and 70s.
McKenna said: “All of the treatments that are available are based on the idea that you are responsible for your mental distress and if you behave well enough and you try hard enough you can get better.
“It’s just as damaging as what happened to those gay men in the 60s and 70s. It’s despicable.
“We cannot have people who are both terrorised by the DWP and the psychiatric system.”
Catherine Hale, lead researcher and project manager of the Chronic Illness Inclusion Project (CIIP), and a member of the Spartacus Network, told the meeting that the hostile environment that had led to disabled people being viewed as “objects of hostility and distrust” was not accidental.
She highlighted how its origins lay in the writings of Gordon Waddell and Mansel Aylward, who advised insurance companies and governments on ways to cut pay-outs to sick and disabled people, as she said had been demonstrated by another disabled researcher, Mo Stewart.
Hale said: “According to them, the only way to get us out of our self-imposed ill-health is through compulsion and punishment, also known as sanctions.
“The first thing we need to do to overturn the hostile environment is to call out and reject these theories.
“We no longer allow scientists to say that homosexuality is a psychiatric condition or that some races are less intelligent than others, so let’s root out this so-called science that says that disabled people are liars and cheats.
“Stop designing assessments that treat us as guilty until proven innocent.”
She added: “We should not be assessing work capability. We should be assessing structural disadvantage in the labour market.”
And she told the meeting: “Let’s move away from the mantra that says that paid work is the only valid route to being a good citizen in our society.”
Mark Harrison, from the Reclaiming Our Futures Alliance, said that disabled people needed to be “in the lead” in co-producing Labour’s new policies ahead of a Labour government.
But he said each policy needed to be assessed on whether it complied with the UN Convention on the Rights of Persons with Disabilities (CRPD), in a process that should be led by disabled people.
He said: “If we don’t have that we are going to end up in problems because if we can’t scrutinise the plans of spending departments, as disabled people we are the only ones who know whether it is CRPD compliant, we are the only ones who know whether it’s based on the social model.”
Dr David Webster, an expert on benefit sanctions from the University of Glasgow, delivered a briefing on his work, which argues against sanctions and conditionality for sick and disabled benefit claimants.
He said that Waddell and Aylward’s work had been “quite clearly intended to soften up opinion so as to prepare the ground for the introduction of ESA**-type provision”.
He added: “The campaign since 2008 to drive sick and disabled people into work through conditionality [such as sanctions] has failed but it has caused a lot of collateral damage.
“It never had any proper evidence base.”
McDonnell called for a rolling programme of lobbying MPs in their own constituencies about the harm being caused to disabled people to ensure that “we are not allowing MPs not to become aware of what is happening within their area”.
He said some MPs only began to appreciate the impact of the government’s reforms once they were confronted with the reality of what was happening in their own constituency and perhaps being introduced to someone who had been sanctioned.
He said the impact of universal credit on all MPs’ constituencies was “brutal”, while the ESA process was “pushing people to the edge”.
He said: “The sanctions regime is still there and people being hardest hit are disabled people and particularly those with mental health issues.”
But McDonnell said he thought people were finally waking up to “the scale of the suffering that’s gone on”, and he said that the work of disabled researchers and campaigners like Hale, Stewart and McArdle was “academically and intellectually unchallengeable now”.
Marsha de Cordova, Labour’s shadow minister for disabled people, told the event: “Nine years of austerity has led to the hostile environment that has been created for [disabled people].”
She said the current assessment regime was “cruel” and “not fit for purpose”, and she added: “People should view the social security system in the same vein as they view the NHS because the welfare state was introduced as a safety net.”
Margaret Greenwood, the shadow work and pensions secretary, said there needed to be a “sea change in the way in which disabled people are treated and we want a social security system that has respect at its core and treats people with dignity.”
*Office for National Statistics figures show at least 50 homeless people died in Greater Manchester in 2017
**The out-of-work disability benefit employment and support allowance
14 February 2019
User-led sector ‘faces threat of extinction’
User-led organisations across the country are continuing to close, with the sector even facing a “real threat of extinction”, leading networks have warned this week.
Those user-led organisations that have found a way to survive are increasingly being side-lined from government consultations and government-funded projects, they said.
The National Survivor User Network (NSUN) estimates that about 50 more user-led organisations that were previously NSUN members have been forced to close in the last year.
This follows a net loss of more than 150 member groups in the previous year.
NSUN, which represents groups and people in England with experience of mental distress, has now warned its members: “This is having a deep impact on collectives of oppressed and marginalised people who have been campaigning to have a voice, lobbying for legislative changes and self-organising to make things better.”
It is so concerned about the continuing attack on the value of user-led groups that it is to focus its campaigning this year on this issue.
Shaping Our Lives, a national network of disabled people and service-users, was even more stark in its warning about the sector’s future.
Its latest estimates are that it has lost about a sixth of its user-led member organisations in the last couple of years, and it believes that this rate of closure is accelerating.
Professor Peter Beresford, SOL’s co-chair, said successive governments had argued for a wider range of providers of public services, but in practice this had led to a “big shift to privatisation and the dominance of big metropolitan-based charities, which are run like big businesses”.
He said: “The great, much-valued innovation of the age has been small, local, accountable user-led organisations (ULOs) and disabled people’s user-led organisations (DPULOs), run by the groups – disabled people, mental health service-users, people with learning difficulties – they are meant to serve.”
But he said the “rising tension in service provision in the context of austerity cuts” had led to the marginalisation of these ULOs, which were now “facing serious crisis” and “a real threat of extinction”.
He called for a “radical review of both government and funding policy” in order to avert this “tragedy”.
Sarah Yiannoullou, NSUN’s managing director, said that user-led groups and networks needed to work more closely together, share their common concerns and experiences and look at collective solutions to ensure their survival.
She said the network’s members and other user-led organisations and networks had faced similar problems over the last five years.
She said: “We are finding there are very similar and common issues, with groups closing, whether it is due to lack of resources or burn-out of the leaders of our groups, there is less and less opportunity for that independent, collective and direct voice.
“So what we were campaigning about 20 years ago and feeling like we were making some progress on, now it feels as though – particularly over the last couple of years – that we are regressing.”
NSUN is now seeking funding for joint research to examine how many user-led organisations are being lost, and how well understood user-led groups are and why they are so valuable.
This week, NSUN launched a survey* that it hopes will provide evidence from user-led organisations of the challenges they are facing, the work they do, the impact they have, and the policy changes they believe are needed to support user-led groups.
NSUN also hopes the research will look at the growing use of language that “blurs the lines” between user-led and non-user-led organisations.
Yiannoullou said: “The space that user-led groups have worked hard to carve out for themselves around advocacy, peer support, involvement, participation and recovery, has become an area of income generation for other [non-user-led] organisations.”
As well as large charities, private sector and statutory bodies like NHS trusts are now involved in this work, further crowding out user-led groups and often changing the kind of work taking place in areas like peer support “beyond recognition”, she said.
Government departments, for example, will use phrases like “user groups” to describe the voluntary sector groups and organisations they have been consulting with, and don’t necessarily differentiate between user-led and non-user-led organisations, said Yiannoullou.
Such groups may have access to service-users who can take part in consultations on disability-related issues, but they are usually not run and controlled by service-users, which means the government is repeatedly breaching the UN Convention on the Rights of Persons with Disabilities and “general comment number seven”, which was agreed last autumn by the UN’s committee on the rights of persons with disabilities.
The UNCRPD makes it clear that, when developing laws and policies relating to disabled people, governments “must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations”.
It defines “representative organizations” as those that are “led, directed and governed by persons with disabilities”.
Yiannoullou said: “We want to reassert and raise awareness of what the distinction is between user-led groups and user groups.
“We also want to get a sense of whether it’s just us (user-led groups) that think this is important.”
NSUN fears that the importance of user-led groups is being lost in the clamour for contracts and increasing competitive tendering.
Yiannoullou said: “It’s a real concern that user-led groups are reporting that their contributions are not being recognised and are having less and less impact.
“The smaller groups, which tend to be the user-led groups, find it really hard to compete. There’s no level playing-field.
“We need to have some high-level conversations about the value of user-led groups, what makes them different and what needs to happen to help them survive the current climate.”
Becki Meakin, SOL’s general manager, said: “The growing pressure on voluntary and community sector organisations to secure funding is evolving into a fight for survival.
“Tactics previously only used by the most aggressive profit-making companies are now becoming common place in the voluntary sector.
“Funders and commissioners need to realise that different types of voluntary and community sector organisations have different skills and strengths.
“One funding model and approach does not work for everyone.”
She added: “Recent government policy is now looking to the community to meet the gaps in provision.
“With the declining number of local user-led groups, where is the knowledge and capacity going to come from?
“It is not just the user-led movement that is stretched to its limits, but it is also the people with lived experience who have committed their time and energy, often for little reward, to providing peer support and advocacy.
“Austerity policies and service cuts have also devastatingly impacted the capacity of individuals to fight for others.”
*User-led organisations that would like to provide their own experiences and concerns can contact NSUN by email at firstname.lastname@example.org or fill in the online survey
14 February 2019
Launch of Neurodivergent Labour ‘could be milestone in fight for rights and equality’
The launch of a new user-led political organisation is set to be a “landmark event” for neurodivergent people in the Labour party.
After three years of lobbying, discussions and consultation, disabled party members launched Neurodivergent Labour in central London on Saturday.
Janine Booth, co-chair of the TUC disabled workers’ committee, who played a key role in its formation, told the launch event it would be “a milestone in the fight for acceptance, rights and equality for autistic, dyslexic, dyspraxic and otherwise neurodivergent people through the Labour party”.
More than 50 neurodivergent party members backed the new organisation’s aim to campaign against discrimination, exclusion, oppression and injustice and for equality for neurodivergent people”.
The new organisation, which will hold its founding annual general meeting later this year, will also work to make the Labour party itself more accessible to its neurodivergent members.
Booth said: “We all know that there are some parts of how the party operates that are not easy for us to navigate, whether it is big long word documents, whether it is unpleasant atmospheres at meetings, whether it is things not being explained properly, whether it is a top-down bureaucratic approach that is hard for us to get involved in.
“So we want to fight to make our party more accessible.”
Those present at the launch also endorsed a draft Labour party autism/neurodiversity manifesto, which Booth and others have been developing for nearly three years.
The manifesto is based on the social model of disability, and an understanding that neurodiversity should be accepted and not suppressed or cured, and comes from an anti-austerity perspective that also sets out to challenge “the deep social routes of discrimination against neurodivergent people”.
It addresses issues around the lack of diagnostic services, the impact of Tory social security cuts and reforms, including neurodivergent people driven to suicide by benefit sanctions, and the crises in social care and housing.
It also highlights a level of hate crime that has “increased with the demonisation of people who are disabled and/or different in pursuit of the Tories’ austerity agenda”.
It calls for legislation to outlaw “quack” cures, such as the “false and dangerous” sale of products that “exploit the fears of neurodivergent people and their families”.
Campaigner Emma Dalmayne told the launch event that she welcomed the inclusion of this measure in the draft manifesto.
She said: “I’ve been campaigning against autistic mistreatment with abusive quack cures for the last five years here in the UK.
“I have literally felt alone for so long. I’ve had so many threats, I’ve had rape threats, death threats, and threats against my family, so I just wanted to say thank you.”
The manifesto also calls for action to make the built environment “less distressing and more accessible”, and for a campaign to raise public awareness of neurodiversity.
And it says there should be a review of the accessibility of the justice system, and action taken to ensure that “non-harmful unusual behaviours are not criminalised, and that people receive support rather than punishment if an intolerable environment causes disruptive behaviour”.
Other policies include neurodiversity training for all teachers and teaching assistants as part of their “core training”; support for neurodivergent students; smaller class sizes; and neurodiversity to be included in the school curriculum.
It also calls for the work capability assessment to be scrapped; for neurodiversity training for all public service staff*; and for a new legal requirement on employers to make workplaces and working conditions “more equal and accessible and less hostile”.
Booth said there had been input into the draft manifesto from thousands of people from within the party, trade unions and the neurodiversity movement, under the guidance of a steering group composed entirely of neurodivergent party members.
She said the draft manifesto had “a set of radical, progressive policies that would significantly improve the lives of neurodivergent people”, and when it was formally adopted by the Labour party “we need to go and tell neurodivergent people that, and say, this is what you will get if you elect a Labour government”.
She said: “We want this organisation to be not just a talking shop, not just to have conferences each year, but to actually go out on the streets and campaign.”
The idea of a Labour neurodiversity and autism manifesto was first suggested by Booth to John McDonnell nearly three years ago, and the shadow chancellor was at the launch event.
McDonnell said it had previously been “pretty bleak” for neurodivergent people within the party who needed support, advice or wanted to push for legislative change.
He said it had been crucial that the new organisation was led by neurodivergent people.
And he promised again that disabled people would be involved in implementing policy when Labour won power.
He said: “As I keep repeating, this is not about electing a group of MPs who will go off and do it for us. That will never work, it never has and never will.
“This is about when we go into government, we all go into government, so we draft our manifesto, we secure commitments from the bulk of the Labour party through the normal policy-making process and then when we go into government, we all work on the detail of the implementation itself.”
McDonnell said his shadow Treasury team would be starting a new exercise next month in which they will recost key policies, in preparation for a possible general election.
He said he wanted the party to insert the issues raised in the draft autism/neurodiversity manifesto into that discussion.
He said: “If we could do that it would be absolutely ground-breaking. We would be the first party to look at this in this overall comprehensive way, and we would be the first government to do it as well, so this is revolutionary, to be honest.
“I think if we can get the debate going early… we can go into government with the implementation plans there, the draft legislation in place, and the funding resources available too.
“You can see how we could transform people’s lives.”
Helen Whitehead, who stood unsuccessfully to be Labour’s prospective parliamentary candidate (PPC) in South Thanet last year, said she believed the idea of setting up Neurodivergent Labour was already working.
She said: “I stood for PPC in South Thanet last year and I did so as an autistic woman, because I was aware that nationally we were becoming more aware of what our abilities are, that we are welcomed by the party, that we are more than capable.
“I did this because I was aware of everything that was happening, so I would just like to thank everybody and point out that you are already doing what we are setting out to put forward today and I think it is absolutely incredible.”
*The Department of Health and Social Care announced a consultation this week on plans for health and social care staff who regularly have contact with patients or service-users to be legally required to undergo training on learning difficulties and autism
14 February 2019
MP speaks of pride at being dyspraxic at launch of Neurodivergent Labour
A disabled MP has spoken of her pride at being able to speak openly about being dyspraxic, after having to hide her diagnosis from employers for years before she entered parliament.
Emma Lewell-Buck was previously a social worker but was “acutely aware that if there were any job cuts that would come around, it would be used against me and I would be the first one in the dole queue”.
She said she used to take work home with her at weekends, work late into the evening and start early in the morning because, like many other disabled people, she felt she had to “go the extra mile” and “work that little bit harder to prove yourself or keep up”.
She was speaking at the launch event of Neurodivergent Labour (see separate story), a political campaign group that will fight for the rights of people with neurological differences such as autism, dyslexia, dyspraxia and dyscalculia, both within the party and in wider society.
Lewell-Buck, the shadow minister for children and families – who later confirmed to Disability News Service that she is happy to be described as a disabled MP – said that being dyspraxic affected her every day in her work.
She said: “Every single thing I do I need to prep for meticulously, down to the tiniest detail.
“But I’m one of the lucky ones because I am in a job where I can openly speak about my disability and I can use my profile to raise awareness.”
The MP for South Shields said she was only diagnosed at the age of 27, after being assessed by an educational psychologist on the advice of a lecturer while she was studying for a masters degree.
She said: “My whole life clicked into place. I suddenly realised why, when I was growing up, I always felt different to other kids and always used to isolate myself.
“I realised why I put my shoes on the wrong feet, why I couldn’t tie my laces properly, button my coat up, why I was always spilling my drinks and why the whole family always referred to me as ‘our clumsy Emma’.
“I was always so frustrated that things that used to come so easily to other kids were so, so hard for me.”
This caused “tremendous low self-esteem and self-confidence” as a child, she said.
But she said she now saw her dyspraxia as an advantage.
She said: “I just see it as I’m a little bit different to some of those around me. I’ve embraced it.
“It doesn’t define me, it’s just part of me. I’ve been forced to adapt and face those challenges, and come up with solutions, and I certainly don’t feel disadvantaged.”
She thanked those neurodivergent party members who had developed the idea of the new organisation, as well as shadow chancellor John McDonnell, who has supported the idea over the last three years and spoke at Saturday’s launch event.
She said: “It is thanks to you that people like me have the confidence to talk about and embrace who we are and thanks to all of you that the fabulously neurodivergent people have been given this platform to help us on the way to that much-needed societal and cultural shift.”
Lewell-Buck said that she, McDonnell and other Labour colleagues were “determined to change the culture of our society and how neurodivergent people and people with disabilities are treated.
“Our approach is a clear move away from the dehumanising and debilitating hostile environment we have seen under the Tories to one where people will be treated with dignity and respect.”
She said it was “the neurodivergent people in this world who have always been the big thinkers, and creators and innovators.
“We are the ones who always have the ability to think outside the box and come up with solutions to some of the world’s greatest problems.”
Among the decisions agreed by the launch event was to endorse a draft Labour autism and neurodiversity manifesto that neurodivergent party members have spent three years developing.
Included in the manifesto are calls for neurodiversity training for all teachers and teaching assistants as part of their “core training”, support for neurodivergent students, smaller class sizes, and neurodiversity to be included in the school curriculum.
Lewell-Buck, who is leading on Labour’s special educational needs and disabilities (SEND) reforms, said the proposals in the draft manifesto were “an exact fit to those that I have been arguing for behind the scenes in my team meetings”, because she was committed to making SEND “an embedded and intrinsic part of our overall education system”.
She said that a good education “can make the difference between where you begin in life and where you end up.
“I am living proof of that: a dyspraxic, dyslexic, shy working-class girl, growing up on the estate where I did, and never destined to be a member of parliament.
“So good education can absolutely make the impossible happen. I am proud to be a Labour MP and I am very proud to be dyspraxic.”
She added: “You have all stopped me feeling different and I have found my home and for that alone you are always going to have my help and support, and I look forward to working with you all.”
14 February 2019
‘Disability Confident’ Arts Council England’s job stats shame
The Arts Council has admitted that only two per cent of its directors – and just three per cent of its managers – are disabled people, despite having achieved “Disability Confident Employer” status under the government’s discredited disability employment scheme.
Arts Council England (ACE) has now become the latest employer to achieve the top two levels of the Disability Confident scheme – including government departments such as the Department for Work and Pensions – despite their own troubling records on disability employment.
The figures came in ACE’s fourth annual diversity report, which showed figures for 2017-18.
ACE, the government’s national development agency for art and culture, produced a stream of figures in its report which revealed almost no progress in increasing the representation of disabled people among staff, managers and directors in larger organisations funded by ACE.
But its own results were just as bad, and often worse, with disabled people making up just six per cent of its overall workforce in 2017-18, the same as the previous year.
And just two per cent of its directors (down from three per cent in 2016-17) and three per cent of its managers (the same as 2016-17) were disabled people.
Abid Hussain, ACE’s director of diversity, admitted that ACE had “as much if not more work to do than the sector”.
He said: “It’s really, really key for the Arts Council to be seen as an employer that disabled people want to work for.
“We need to be removing any barriers that people are facing.
“If we can have disabled people informing our policy-making, informing the way our funding is distributed, but also having a very honest conversation about the things we can do better, then I think we’ll see a shift in our culture and our ability to see the progress we want to see.”
There were also troubling results from its survey of major ACE-funded museums, with the proportion of disabled directors falling from four per cent to just two per cent.
And two major arts organisations – Bristol Old Vic and The University of Warwick – both admitted that they still do not employ a single disabled person, three years on from ACE figures that showed that disabled people made up zero per cent of their workforces.
Other arts organisations – all of which have more than 50 permanent staff – who admitted that disabled people made up zero per cent of their employees included The Customs House, in South Shields, Hull City Council, and Midlands Arts Centre in Birmingham.
Across the whole of ACE’s national portfolio of funded organisations, the percentage of disabled workers rose from four to five per cent and remained at four per cent for its major funded museums.
Sir Nicholas Serota, ACE’s chair, said: “Progress has been too slow, there’s no question about it.”
ACE said its report showed that fewer people were now responding to questions about their own status with “prefer not to say”, but many organisations were still returning a high level of “unknown” responses.
This could mean that there were more disabled people working in organisations than the report suggested.
It plans to put more pressure on organisations which consistently report high levels of “unknown” data, “reminding them of their obligations under their funding agreements”.
14 February 2019
‘Delight’ over breakthrough on Welsh independent living scheme closure
Disabled campaigners have welcomed measures that aim to address concerns over the imminent closure of the Welsh government’s independent living grant scheme.
Julie Morgan, the deputy minister for health and social services, has written to council leaders to ask for an immediate “pause” in the closure programme and its replacement with a system of council-funded support.
There will now be new independent assessments for any former recipients of the Welsh Independent Living Grant (WILG) scheme who are unhappy with the new support packages allocated by their local authority.
The new measures came just two weeks after Nathan Lee Davies, who has led the campaign to save the WILG scheme, sent an 80-page dossier of evidence about the closure to Welsh Labour’s new leader and first minister, Mark Drakeford.
Davies told Drakeford in an open letter accompanying the dossier that closing WILG would leave disabled people with high support needs, like him, “at the mercy of cash-strapped Local Authorities who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow”.
He sent his letter with just two months to go until the interim WILG scheme was due to close.
Now Morgan has announced a pause in the transition to the new system.
WILG was set up – with UK government funding – as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.
The Welsh government is now closing WILG for good and transferring the funding to local councils, and by April the 22 local authorities were due to be solely responsible for meeting the support needs of all former ILF-recipients in Wales.
But in a written statement to assembly members, Morgan said she had considered the evidence and decided there needed to be a “change in direction” because her government’s own review had shown a significant variation in how support packages were being cut by different councils.
Morgan said that all WILG recipients who were unhappy with their new care and support package and would like a second opinion would now be offered an independent assessment.
These assessments will be funded by the Welsh government, which will also pay for any resulting additional hours of support.
The government said that the new assessments would “acknowledge the historical entitlement of former ILF recipients”, while Morgan told assembly members in a written statement that there would be “no financial barrier [so] no-one need have less favourable care and support than they had under ILF”.
Morgan, who praised Davies and his fellow campaigners, said: “It is paramount that people’s ability to live independently is not compromised by changes to the care and support provided for people previously in receipt of the Welsh Independent Living Grant.
“These changes will ensure that is the case and deliver a consistent level of care and support across Wales.
“While the majority of former ILF recipients are receiving the same or more care as they were previously, a significant number have experienced a reduction in hours of support.
“There is also considerable variation in the reductions in support.
“I have therefore written to local government leaders to request a pause of the transition with immediate effect in order to bring in the revised arrangements.
“This is a significant change of approach that ensures that the needs of former WILG recipients will be fully met, and that resources are no barrier to a full package of care and support.”
Davies, who was celebrating his birthday on the day of the announcement, said it was “the perfect 42nd birthday gift”.
He said later in a statement: “I would like to place on record my delight at the breakthrough we have made.”
He added: “It is a pleasure to be working with our new first minister Mark Drakeford and his revamped cabinet that differs substantially from the previous regime.
“Welsh Labour have now successfully re-branded themselves and are moving forward with a clear vision of creating a society based on 21st century socialist ideas.
“There is still some work to be done with Welsh Labour on the new arrangements to support disabled people to live independently.
“I am confident that this work will be carried out constructively and add to the ‘clear red water’ that Welsh Labour are once again setting between themselves and Westminster.
“The fact that the party that I am proud to be a member of, has listened and acted appropriately is really encouraging and gives me hope for the future.”
Disability Wales praised Davies’s campaigning work and the Welsh government for “listening and responding to the evidence” and added: “This is really welcome news for Welsh disabled people who had lost vital support after the ILF closed.”
14 February 2019
Parents who home educate disabled children ‘scapegoated’ by commissioner
Families forced into home educating their disabled children because of the lack of support from mainstream schools are among parents who are being “scapegoated” by the children’s commissioner, according to a disabled mum and campaigner.
Anne Longfield, the children’s commissioner for England, published a report last week that calls for action to address the lack of knowledge about the standard of education and safety of the tens of thousands of children currently being home educated.
Research by Channel 4’s Dispatches, for a documentary presented by Longfield last week, found that 22 per cent of children withdrawn from school to be home educated in 2017-18 had special educational needs (SEN).
The number of children known by local authorities to be home educated has doubled since 2013-14.
Longfield said there were concerns about whether some of these children were safe and if they were receiving a good quality education.
She wants to see a compulsory register of home educated children, and greater oversight of those arrangements.
But disabled activist Dennis Queen, who home educates her 14-year-old twins Stan and Rosa, who are both disabled, says home educators are being blamed rather than the schools that caused the problems in the first place.
And she is angry that the commissioner is suggesting giving greater powers to the local authorities that are already responsible for failing children who have been forced into home education.
She says the people they need to worry about are parents who have removed their children from school but are not home educating them.
Longfield said: “We need to know who these children are, where they are, whether they are safe and if they are getting the education they need to succeed in life.
“There is a clear case for the government to introduce a compulsory register for all home educated children, without delay.”
But Queen said such a register and greater oversight would be “a fundamental change to the law around children and education”, which currently says that it is the legal duty of parents – and not the state – to provide an education for their home educated children.
She and other campaigners believe such measures would breach the human rights of home educating families, who have rights to privacy and a family life under the Human Rights Act.
Local councils have an obligation to identify children they believe are not receiving a suitable education, but they have no legal duty to monitor those being home educated and do not have the powers to insist on visiting a home unless they have a welfare concern.
Councils are responsible for safeguarding in their area and have the same safeguarding powers in relation to children educated at home as to those educated at school.
But Queen says that most families who home educate – some of whom choose to do so without even trying the school system – are already checked by local authorities, and she and others want those checks to remain voluntary.
She said: “We will comply with whatever they ask us to do, but it is not going to help Anne Longfield find the children who are not getting an education.
“I think there is enough oversight already. In general, families comply when they are asked and if they don’t comply and there are concerns, they can be made to comply.
“I think any further measures waste energy and money which could be used instead to find children who are not getting any education.”
She added: “Every minute we waste preparing for assessment is another minute not educating our children.
“Many kinds of home ed exist and some are vastly different to schooling. Each child has a fully individualised education. They just can’t be measured by systems set up to measure schools.”
Introducing a new assessment system would “ruin it completely”, she added.
She said: “Home ed works partly because of the immense freedom we have to educate in ways which work for our children.”
She says her twins are now studying a wider range of subjects, and they have more friends, than they did when they were at school.
Queen says research shows that home-educated children have better outcomes on average than those who attend school – probably because those children benefit from more individual attention – with those improvements even greater for children from more deprived backgrounds.
Her experiences show how schools are forcing many parents of disabled children into removing them from school and home educating them instead, she said.
She had to remove her autistic son Stan from his mainstream school when the local authority halved his support package, and the school was about to insist that he move to a special school.
If she had not done so, she says, he would have had to attend a special school far from home, travelling an hour each way every day.
Rosa was de-registered about 18 months later, after the school kept punishing her for not sitting still in her chair, even though she was in pain because of her impairment.
Longfield said that many home-educated children have been “off-rolled” by schools, a process where parents are pressured to remove their child because of poor academic results, or because they have support needs the school is unwilling or unable to meet.
She wants to see stronger measures to tackle off-rolling.
Research by the Children’s Commissioner’s Office shows that the number of children moving into home education from academy schools in one London borough increased by 238 per cent between 2016-17 and 2017-18, compared with a rise of 21 per cent in council-run schools in the borough.
Inclusive education campaigners have been warning for years that the spread of academy schools was undermining the inclusion of disabled children in mainstream schools.
Queen agrees that measures should be taken to address off-rolling, and that the spread of academies has worsened the problem.
The school previously attended by Rosa and Stan later became an academy, and has off-rolled other disabled children, says Queen, who has now joined other parents in sharing her experiences with the home education website Suitable Education.
She said: “We can’t let them turn home education into a dumping ground for children with SEN. It has to be a choice.”
Tara Flood, director of The Alliance for Inclusive Education (ALLFIE), said her organisation had been concerned for years about the impact of academies on inclusive education, and about the practice of off-rolling, in what was a “fundamentally broken” school system.
She said: “We completely understand why parents make what can sometimes be a very difficult decision to pull their young person out of school.”
But she said that as more and more children are withdrawn from the mainstream school system, that lets the school system “off the hook”.
She said: “If you have got a pupil population that is less and less diverse in terms of their learning and access requirements, the pressure becomes less and less to offer creative solutions to your existing pupil population.”
That applied to the government and local authorities as well as education providers, she said, and led to an education system that was “less and less willing to be inclusive”.
Flood said the home educating community was responding to “an increasingly hostile school system” but it was up to the government, the education watchdog Ofsted and education providers “to end that hostility”.
A Department for Education spokesperson said: “There are thousands of parents across the country who are doing an excellent job of educating their children at home.
“We know, however, that in a very small minority of cases children are not receiving the standard of education they should be or, very rarely, are being put at risk.
“That’s why we recently ran a call for evidence on home education asking for views on issues such as registration, monitoring provision and support for home educators.
“We have also consulted on revised guidance that will help local authorities and parents better understand safeguarding laws applicable to home education.
“We are considering the responses and will respond to both the call for evidence and consultation in due course.”
14 February 2018
News provided by John Pring at www.disabilitynewsservice.com