The proportion of Department for Work and Pensions (DWP) staff who say they have been victims of disability discrimination at work in the previous 12 months has risen by about 50 per cent in just four years, Civil Service figures have revealed.
The annual Civil Service People Survey shows the number of DWP staff saying they had personally experienced disability discrimination at work in the past 12 months rose by 150 (more than 10 per cent), from 1,462 in 2017 to 1,612 in 2018.
And the proportion of all DWP staff reporting disability discrimination rose by about 12 per cent, from about 2.55 per cent of all employees in 2017 to about 2.85 per cent in the 2018 survey.
This was an increase of about 50 per cent since the 2014 survey, when 1.91 per cent of those responding to the survey said they had experienced disability discrimination at work in the previous year.
But the figures are even more striking when compared with the number of disabled staff employed by DWP.
The latest Civil Service figures, from November 2018, show that only 7.7 per cent of DWP employees declared that they were disabled.
This suggests, according to calculations by Disability News Service (DNS) – which DWP has failed to comment on – that more than a third of disabled DWP staff experienced disability discrimination at work in 2018.
The proportion of DWP employees who have experienced any kind of discrimination has also continued to increase in the last four years, from 11 per cent in 2014 to 14 per cent in 2018.
It is just the latest evidence of worsening levels of discrimination within the government department responsible for the much-criticised Disability Confident scheme and will further strain the scheme’s credibility.
DWP itself has been awarded the status of Disability Confident Leader, the highest of three levels within the scheme, which aims to work with employers to “challenge attitudes towards disability” and “ensure that disabled people have the opportunities to fulfil their potential and realise their aspirations”.
Last week, DNS reported how DWP repeatedly failed to make reasonable adjustments for disabled people who were recruited to build bridges between jobcentres and the local community through its Community Partners scheme.
In November, the department admitted failing to keep track of how many complaints by staff through its internal grievance system were based on allegations of disability discrimination.
Earlier the same month, new research showed that the Employment Tribunal had dealt with almost 60 claims of disability discrimination taken against DWP by its own staff over a 20-month period.
And last summer, figures provided to the work and pensions select committee by Sarah Newton, the minister for disabled people, showed that nearly 7,000 employers that had signed up to Disability Confident had promised to provide just 4,500 new jobs for disabled people between them, an average of less than one per employer.
Marsha de Cordova, Labour’s shadow minister for disabled people, declined to comment on the DWP discrimination figures this week.
But David Gillon, a prominent disabled critic of the Disability Confident scheme, said: “If DWP can’t even tackle a rapidly increasing disability discrimination problem, never mind resolve it, then how can they justify retaining their Disability Confident Leader status, and their leadership of the entire Disability Confident programme?”
He said that a total of 1,612 incidents of disability discrimination was more than six per working day.
He said: “A core responsibility of a Disability Confident Leader is being an example to others, and teaching lessons learned across the Disability Confident community.
“There is precisely zero evidence of DWP doing this, or even acknowledging that they have a problem, so the justification for their retaining Disability Confident Leader status appears absent.
“In fact, their failure to acknowledge the issue argues strongly for the removal of their Leader status.”
He said it was “particularly disturbing” that the number of incidents of disability discrimination reported “far exceeds” those in areas such as ethnicity and sexual orientation, which was “the reverse of the pattern seen for harassment in the general population from police and Crown Prosecution Service figures”.
He added: “This strongly suggests that the issue may be a cultural one related to views of disability within DWP or the Civil Service as a whole.”
A DWP spokesperson refused to say if Newton was concerned about the figures, why DWP thought the figures had risen so sharply over the last few years, and why it thought there had been another year-on-year increase in 2018.
She also refused to say if Newton thought the figures suggested complacency by ministers about discrimination, whether they suggested DWP was institutionally disablist, and whether DWP should still be able to call itself a Disability Confident Leader.
But she said in a statement: “We are absolutely committed to ensuring all colleagues, including those with disabilities or health conditions, get the support they need to thrive.
“The department has a duty of care to its colleagues and aims to lead by example as a Disability Confident employer, following best practice in recruiting, retaining and developing disabled staff.
“We take very seriously any reports of disability discrimination from colleagues, while taking active steps to promote equality.”
28 February 2019
The Department for Work and Pensions (DWP) failed for years to comply with its legal duties under the Equality Act by refusing to provide an accessible way for many disabled people to communicate with its staff about their benefits, a judge has ruled.
Judge Jeremy Johnson said in a high court ruling that DWP’s “systemic” failings pre-dated the Equality Act, which became law in 2010, and meant that some disabled people had been deprived of “essential” benefits.
His written judgment also revealed that DWP admitted that its creaking IT systems that deal with employment and support allowance (ESA) claims were not fit for purpose but that it was not worth spending £750,000 updating them because of the continuing roll out of universal credit, which has a new IT system.
Several disability organisations had provided evidence to the high court of DWP’s continuing refusal to allow disabled people to communicate via email about their benefit claims, even though they needed to do so for access reasons.
It is just the latest case to raise serious concerns over whether DWP is fit for purpose as a government department.
Last month, DWP admitted it had been forced to launch its seventh costly trawl through the records of disabled people unfairly deprived of benefits, following years of serious errors by senior civil servants.
And last week, an independent investigation found DWP failed five times to follow its own safeguarding rules in the weeks leading up to the suicide of a disabled woman with a long history of mental distress.
The latest court case was brought by Paul Atherton, a homeless disabled man from London who is going through the transition process from incapacity benefit to ESA.
He had argued that DWP had refused to provide an accessible way for him to communicate about his benefits by email.
He had represented himself in court, with the help of reasonable adjustments arranged by the judge.
Atherton argued that DWP had breached its public sector equality duty and its duty to make reasonable adjustments, both under the Equality Act.
The judge dismissed his judicial review claim, finding that DWP had satisfied its duties under the Equality Act, but only because it eventually introduced a new way for Atherton to communicate with the department after he had lodged his legal claim.
DWP had previously refused to communicate with Atherton by email – something he said was essential, as he had no home address – arguing that it was unsafe to do so for data protection reasons.
His fluctuating health condition means he does not know from week to week if he will be in hospital, staying with friends, or elsewhere, does not use a telephone, and is not always well enough to travel to collect mail from a jobcentre.
He first claimed disability living allowance (DLA) and incapacity benefit in 2001 but is currently not receiving either because of his health-related failure to attend face-to-face assessments, although he says DWP has backed down and agreed to reinstate his DLA.
Until 2014 he was allowed to communicate with DWP via email, but that system broke down in 2016 when DWP refused to send “confidential information” via email.
After he began legal proceedings, DWP agreed to allow Atherton’s correspondence to be dealt with through a “workaround” system similar to one which is currently offered to about 3,700 other disabled benefit claimants.
Under this system, DWP changes the home address of claimants needing reasonable adjustments to that of a central “alternative formats” team, and posts letters to that team, which then converts the correspondence into an accessible format and sends it on to the claimant.
The latest figures show that only 32 of the 3,700 disabled claimants have requested correspondence via email.
Because claimants’ addresses are stored in a cross-government database, letters sent by other government departments and local authorities are often swept up in the system and have to be returned to those organisations to be reposted.
Atherton rejected the plan because he believed there was “a significant margin for oversight or error” and it would not allow him to exchange emails with a named DWP contact.
He provided witness statements from six other disabled people who had had problems persuading DWP to communicate with them by email.
Evidence of problems was also provided by Inclusion London, RNIB and the National Deaf Children’s Society.
Inclusion London said its research showed that “those who ask for email communication are discouraged by the frontline staff”, while RNIB said DWP “only appears to be prepared to take on board these comments and take action when they are accompanied by the threat of litigation and even then the process is extremely slow”.
DWP told the court that its “current security policy has to be placed in the context of a world where cyber-crime and data theft are rising at an exponential rate and keeping one’s data safe and secure is becoming ever more difficult”.
But it accepted that the understanding of frontline staff about its obligation to allow communication via email as a reasonable adjustment “has not always been consistent throughout the UK”.
DWP told the court that the alternative formats workaround was necessary because some of its IT systems were more than 20 years old and “run on code written in obsolete computer languages”.
It has estimated that it would cost up to £750,000 to carry out the work necessary to allow ESA claimants to receive communications directly in alternative formats such as Braille, large print or email.
Judge Johnson said DWP had failed for years to comply with its duties under the Disability Discrimination Act and then the Equality Act.
And he said that those with difficulty communicating by post “were, in many instances, unable to secure a satisfactory means of communication with the DWP”, which meant that some went without essential benefits.
But he concluded that DWP had now provided a reasonable adjustment to Atherton and complied with its public sector equality duty, although it was “understandable” that he “should continue to be sceptical about the DWP’s commitment to ensuring compliance with its statutory duties” and that this scepticism “may prove to be well-founded”.
Although dismissing his claim for judicial review, he also suggested that DWP could still be breaching the public sector equality duty for other claimants, by failing to “appropriately signpost” them to its alternative formats team.
Atherton told Disability News Service: “Whilst the judicial review wasn’t upheld by the judge it’s clear he wanted to lean in my favour.
“The DWP won on a technicality but there can be no doubt whatsoever that they lost on moral, justice and decency grounds.
“I was elated that the judge acknowledged the department’s failures and horrendous attitude to disabled claimants.”
He said he hoped DWP would now “finally make amends”, although its track record was “not good”.
A DWP spokesperson said: “We are committed to continually improving the delivery of services for customers with specific communication needs while ensuring that we’re handling people’s data sensitively.
“That’s why we have improved guidance and training for DWP teams who offer reasonable adjustments and alternative formats to people who need assistance to access our services and information.
“The provision of email as a reasonable adjustment is available for all benefits on request and without exception.”
28 February 2019
Activists have told a UN committee how the UK government is failing to address the significant barriers and human rights violations faced by disabled women in accessing social security, justice, jobs and health services.
Eleanor Lisney and Rachel O’Brien, from the disabled women’s collective Sisters of Frida, were among UK women’s rights campaigners in Geneva this week to brief a UN committee of women’s rights experts.
The committee was examining the UK on its progress in implementing the Convention on the Elimination of all Forms of Discrimination Against Women (CEDAW).
It is just the latest in a series of examinations of the UK’s record on disabled people’s rights by UN human rights bodies.
Last November, the UN’s special rapporteur on extreme poverty and human rights, Professor Philip Alston, said the UK government had inflicted “great misery” on disabled people and other marginalised groups, with ministers in a state of “denial” about the impact of their policies.
The previous year, the UN committee on the rights of persons with disabilities told the UK government to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights.
And in 2016, the same committee said the UK government was guilty of “grave and systematic violations” of three key sections of the UN Convention on the Rights of Persons with Disabilities, most of them caused by ministers at the Department for Work and Pensions.
In a briefing passed to the CEDAW committee – jointly prepared with Women Enabled International (WEI) – Sisters of Frida said research showed that about a quarter of disabled women had missed a meal in the last year because they could not afford it, while social security reforms had “disproportionately impacted” disabled women.
In 2017, more than a third of disabled women earned less than the national living wage, the briefing added.
Sisters of Frida also said that disabled women in the UK experience violence at higher rates than other women, because of both discrimination and economic disempowerment.
Nearly one in every two disabled women will experience domestic violence in their lifetime, compared with about one in four of all women, while domestic violence shelters and services for victims of violence remain inaccessible for disabled women.
Disabled women also face significant barriers in accessing justice, with cases of sexual violence significantly less likely to be referred by police for prosecution if the victim is a disabled woman, while laws and policies addressing violence against women “routinely fail to include disabled women”.
Sisters of Frida – which received funding from the Equality and Human Rights Commission (EHRC) to attend the examination of the UK government in Geneva – also warned the committee that disabled women faced increased barriers to accessing healthcare, particularly maternal health services.
The committee was told that disabled women report “significant barriers” in accessing “continuity of care during the prenatal period, a lack of control during labour and delivery, and inadequate postnatal care”.
Following the briefings by campaigners, including Lisney and O’Brien, the committee questioned UK government representatives about its implementation of CEDAW.
Among the issues raised by the committee were the low employment rate for disabled women, the impact of universal credit on women, the failure to include disabled women in sex education and the barriers faced by disabled women who experience domestic violence.
O’Brien, disabled students’ officer for the National Union of Students but in Geneva representing Sisters of Frida, said afterwards: “Some of the issues we raised were about welfare reform and how that relates to domestic abuse, and the lack of access to justice for disabled women in the light of legal aid cuts, especially regarding benefit tribunals.”
She said the government’s response to the committee’s questions had been “poor, especially regarding the impact of universal credit on women and disabled people”.
She said she hoped this would be reflected in the committee’s report.
EHRC had also submitted a report to the CEDAW committee, with recommendations for the UK and Welsh governments.
Its report raised concerns about the impact of the UK government’s legal aid cuts and reforms on disabled women; called for action to close the disability pay gap; and called on the UK government to assess the impact of its benefits sanctions regime on groups including disabled people.
It raised concerns about mental health services in prisons; the possibility of the government’s community sentence pilot leading to compulsory treatment for women with mental health conditions; and access to healthcare for disabled asylum-seekers.
It also called for action to eradicate the use of physical and chemical restraint in mental health settings, pointing out that “girls are more likely to be physically restrained than boys, and women are more likely to be repeatedly restrained than men, including in a face-down position”.
It said 32 women have died after a restraint episode over the last five years after being detained under the Mental Health Act.
EHRC also called on the UK government to implement section 106 of the Equality Act, which would force political parties to publish data showing how many of their parliamentary candidates are disabled people.
It also wants there to be work with political parties and other organisations “to improve the reliability of support available to disabled women candidates, and legislation to exempt costs arising from disabled candidates’ impairments from statutory limits on campaign expenditure”.
In her opening statement to the CEDAW committee, the head of the UK delegation, Elysia McCaffrey, the deputy head of the Government Equalities Office, stressed the UK’s commitment to “advancing gender equality” and said the UK government planned to use the power of #MeToo and other campaigns to “strengthen” its compliance with the convention.
She said the government’s strategy on gender equality and economic empowerment, which will be published this spring, would “seek to do more for low paid and financially fragile women, and women facing multiple barriers or with complex needs”.
But she mentioned disabled women only once in her speech of more than 3,700 words, and that related to workplace equality funding introduced by the Scottish government.
28 February 2019
Increasing numbers of local authorities are breaching the Equality Act by designing “dangerous and discriminatory” road layouts that put blind and partially-sighted people at risk of serious harm, say disabled campaigners.
The concerns have been raised by the user-led campaign group National Federation of the Blind of the UK (NFB UK), which has grown increasingly concerned by schemes being introduced across the country.
Among those councils it has highlighted are Manchester City Council, Leicester City Council, and Enfield council in north London.
In Enfield, the council has introduced bus stops that place blind and disabled pedestrians at risk of colliding with cyclists.
The “boarder” bus stops have cycle lanes between the bus stop and the boarding point for the bus.
Sarah Gayton, NFB UK’s shared space coordinator, said: “I was shocked at what I saw in Enfield. I had been told it was bad but had no idea quite how bad it would be.
“Anybody can see the design is flawed and is inherently dangerous.
“The scheme is a disaster for blind people. It is difficult to see how this could have been approved as acceptable.”
In Manchester, the city council plans to introduce more than 30 bus stops in Chorlton as part of a new cycling scheme, including 14 boarder bus stops.
It also plans 17 bus stop “bypasses” or “islands”, which place the bus stop on an island, with pedestrians forced to cross a cycle lane to reach it.
NFB UK points to research carried out by Danish researchers which found that the number of collisions involving passengers entering or exiting a bus rose from five to 73 after bicycle lanes were introduced.
Other Danish research showed two-fifths of bus drivers across five cities in Denmark had witnessed bus passengers involved in collisions at both the types of bus stops.
NFB UK said that it had offered to work with Manchester City Council on the cycling scheme in August 2018 but its offer was not taken up.
It now wants a halt to the introduction of all further bus stop boarders and bypasses across the country.
Many of these schemes include zebra crossings, and cyclists often fail to stop at these crossings, leaving blind and other disabled pedestrians unsure whether they can cross to exit or enter a bus.
Last month, NFB UK filmed a succession of cyclists riding through a zebra crossing introduced as part of a bus stop bypass scheme in Manchester, even though a blind man with a white cane was waiting with his cane on the crossing.
Gayton said: “Both the bus stop boarders and bypasses really need to halt until we can work together to work out a different solution.”
In Leicester, NFB UK points to the removal of controlled crossings at key junctions, as part of the Connecting Leicester scheme, which it says has made key routes from the train station inaccessible.
Andrew Hodgson, NFB UK’s president, said some of the schemes introduced in London had “created real distress for blind and disabled people”, and that the Enfield scheme was “dangerous and discriminatory”.
NFB UK and the user-led accessible transport campaign organisation Transport for All supported a petition delivered to the prime minister last month by Enfield residents which called for stronger equality laws on the design and re-design of roads.
The petition also calls on the government to force local councils to commission independent equality impact assessments of all road and community re-design proposals and then “to abide by the findings and recommendations of those assessments”.
An Enfield council spokesperson said it “emphatically” rejected the suggestion that it had breached the Equality Act and said that it was “fully committed to equality in everything we do”.
She said the council had engaged with disability organisations including Enfield Disability Action, Guide Dogs for the Blind and Enfield Vision, and had worked directly with the Centre for Accessible Environments.
She said: “We believe that the current design for bus boarders in Enfield does make it clear that pedestrians have right of way.
“In addition, the installation of buffer strips, ramps, signage and distinctive paving all inform cyclists that they are entering an area used by pedestrians and must give priority to pedestrians.
“In our response to NFB UK, we reiterated that as we continue to deliver this programme, we will continue to explore more ways to constructively engage with a range of community groups.
“As part of this, we are interested to hear the views of organisations who represent people who are visually impaired/have particular accessibility requirements.
“This is the case in both informing early design work, and also in listening to any specific issues that are raised post-construction.”
She said that Transport for London (TfL), which funded its Cycle Enfield programme, was conducting a London-wide review of bus stop boarders, and she added: “We will consider any outcomes of this carefully in conjunction with TfL and if appropriate make adjustments.”
A Manchester City Council spokesperson said it was studying more than 1,800 responses to a public consultation on its proposed Manchester to Chorlton walking route and cycleway and would “take them into account before the designs are finalised”.
He said the council, along with Greater Manchester’s cycling and walking commissioner Chris Boardman and Trafford Borough Council, was “committed to providing a walking route and cycleway which is safe and accessible for all road users”.
He said: “We have met with representatives of blind and partially-sighted residents to ensure they had the opportunity to review the designs and provided extra time for them to respond to the consultation.
“We thank them for their valuable input into this process and will take their comments fully into consideration during the process of finalising the designs.”
But he said the council was “not aware of a specific offer from NFB UK to ‘cooperate’ with us on the design of this scheme”.
A Leicester City Council spokesperson said it had met national guidelines in removing the two controlled crossings, which had “significantly reduced the number of vehicles in these locations and their speed”, while alternative pedestrian routes remained available.
She said: “We listen to all comments received on schemes we propose. Ultimately, we have to decide what will be the most sensible solution to achieve a layout where people, not vehicles, dominate.”
She said Leicester’s city mayor, Sir Peter Soulsby, had taken part in a blindfolded walk around the city with local sight loss charity VISTA, which included the two sites, and he was now “considering the concerns raised with him”.
Sir Peter said: “I welcomed the opportunity to walk through the city with representatives of VISTA and a member of [NFB UK].
“While we have done a lot in recent years to make the city centre much more accessible to people with disabilities, it was very useful to find out what barriers and challenges still remain.”
28 February 2019
Disabled artists and activists are mourning the death of Katherine Araniello, a “force of nature” who leaves behind a “hugely significant” disability arts legacy.
Araniello was a performance and video artist who used satire and subversive humour at the expense of “dehumanising and patronising” targets such as disability charities, the Paralympics and media representation of disabled people.
Tony Heaton, chair and former chief executive of Shape Arts, said Araniello was “an original and independent thinker” with a “wicked sense of humour and irony”, and her death was a “huge and devastating loss”.
Disability Arts Online said on Twitter that she was “a force of nature with such a sardonic wit that permeated all of her artworks” and would be “sorely missed by the disability arts community”.
The disabled Labour politician Mary Griffiths Clarke praised her “unrivalled wit and creative genius” and said on Twitter that the news of Araniello’s death had caused shockwaves across the disability rights movement.
In an interview with David Hevey for the National Disability Arts Collection and Archive (NDACA), Araniello said she first became politicised as a disabled person after leaving segregated education and discovering the concept of independent living through Greenwich Association of Disabled People, led at the time by Rachel Hurst.
She said: “From Rachel Hurst, I realised that for me there was only the social model of disability and being politicised… [which was] a far more natural way of thinking.”
Araniello was involved in the Campaign for Accessible Transport (CAT), which she said was “an adrenaline rush” because it was aimed at “blatant discrimination”, and the Block Telethon protests of the early 1990s, and also took part in direct action protests with the Disabled People’s Direct Action Network (DAN).
She told Hevey: “It was absolutely nauseating to watch on television people raising thousands of pounds for people that identified very much so as someone like me.
“It was a humiliating thing to watch on television.”
She said that involvement in a movement of other disabled people who felt the same as she did had been empowering because “collectively it became very powerful”.
Among her work were the films she made parodying Channel Four’s adverts for the Paralympics, where “there were so many things that were offensive but you would only realise it if you had a critical eye to such narratives”.
She had been appalled at the decision to merge the London disability arts festival Liberty with National Paralympic Day.
A close friend of the late David Morris – whose idea it was to set up Liberty – she told Disability News Service (DNS) in 2013: “It feels like Liberty has become a sideline and the Paralympic side has taken the forefront, and I am absolutely disgusted about it.
“I am not aware of any arts organisation that would merge with sport, but because it is disability it seems perfectly acceptable.
“The other part I despise is that Paralympians are suddenly becoming spokespeople on disability when actually they haven’t engaged on that level because it isn’t what they do.”
She was dismissive of any suggestion of a legacy from the London 2012 Paralympics, arguing that life for disabled people had worsened since London 2012, with benefit cuts and the increasing difficulty of securing the funding they needed to ensure their independence.
She said: “We are feeling the threat. It is a threat to our existence and our future, participating in the world and contributing.”
Araniello said the Paralympics had painted a representation of disabled people “being capable and able in a sporting environment… an environment they are used to working in”.
She said: “But if you take them out of that environment… disability and access and barriers become all too paramount.
“It is quite insulting to be honest to be in the mindset that people who do sport are going to change the future of other disabled persons’ lives, because they are not.”
She added: “The only positive that I see is I like the idea of seeing more disabled people being represented in the mainstream. If it has to be sport, then so be it.”
Among the many disability rights campaigns she supported were those to save the Independent Living Fund and to fight off attempts to legalise assisted dying.
In 2014, she told DNS that defeating Lord Falconer’s assisted dying bill was probably “the most fundamental issue” facing disabled people, because “if we are dead, nothing else matters”.
She said: “I see myself here today as protesting to save my life and everybody else’s life… We are all terminally-ill, we are all going to die at some point.”
She said it was deeply ironic that 20 years ago, she had been protesting to make buses accessible and “now, 20 years on, I am protesting to save my life and other disabled and elderly people’s lives”.
Araniello had a master’s degree in fine art from Goldsmiths, University of London, where she won the Warden’s Purchase prize for her pop video parody I Like That, having previously secured a first class degree in fine art from London Guildhall University, where she had been awarded the Owen Rowley Prize for her short film Slapping.
She often worked alone, but also collaborated with other disabled artists.
In 2006, she formed The Disabled Avant-Garde with Aaron Williamson.
Together, they produced films such as Amazing Art, Unbelievable, Damaged Dance and Stage Invasion, in which they invaded the stage at the 2011 Liberty festival to announce that “disability art is dead”.
Williamson said that it was a selection of their films that were shown as Melvyn Bragg was interviewing the disabled artist Yinka Shonibare in 2007 that prompted Shonibare to declare that disability arts was the last remaining avant-garde movement, a comment Bragg referred to in an article in The Guardian and which is often repeated.
Williamson, who told DNS of his grief at the loss of his friend and former collaborator this week, said: “Part of our armoury was aimed at the mainstream ‘able’ society.
“But also, we were extremely critical of the hubris and the sanitised versions of ‘disability art’ that were dominant during our period of operations.
“We had innumerable rejections of art proposals from so-called ‘disability art’ schemes, even as we were being critically acclaimed around the world.”
In an interview published by the Canadian Journal of Disability Studies in 2013, Araniello said her work was “always about giving fresh, alternative perspectives on disability” and creating work that would “shift people’s perspectives on contemporary issues of disability”.
Among the many art galleries and festivals that showed her work were Tate Modern, Tate Britain, DaDaFest, the Institute of Contemporary Arts, the Serpentine Gallery, the Canadian Arts and Disability Festival, and the Urban Institute for Contemporary Arts in Michigan.
She was also on the board of the Live Art Development Agency.
Heaton said: “I thought Katherine was an original and independent thinker who thought disabled people should be politicised and embrace the social model.
“She was an early proponent of disability arts and her work, often subversive, falls clearly within the canon of disability arts; her work made people question, quite rightly, the way society marginalises disabled people.
“She had a wicked sense of humour and irony, very evident in her work, and she was always great company to be with.
“Her death is a huge and devastating loss and it’s vital we keep Katherine’s life and work in the public arena.”
28 February 2019
The government wants to increase the number of people who use personal health budgets (PHBs) to choose their own health and social care support from 40,000 to as many as 200,000 over the next five years.
It has approved extending legal rights to PHBs to disabled people eligible for funding from NHS wheelchair services, and those eligible for aftercare services under section 117 of the Mental Health Act.
But it also signalled that these rights would eventually be extended to other groups, including people with ongoing social care needs who also make regular and continuing use of particular NHS services; people leaving the armed services who are eligible for ongoing NHS services; and autistic people and those with learning difficulties who are eligible for ongoing NHS care.
PHBs give individuals a pot of money to spend on their health and wellbeing needs, in agreement with a healthcare professional.
Many disabled campaigners have supported the expansion of PHBs, arguing that they could help deliver independent living for disabled people, while others have raised concerns that they could be part of a creeping privatisation of the NHS, and that they are based on the same “failing” model used with social care personal budgets.
Currently, only adults receiving NHS Continuing Healthcare, and children and young people who receive continuing care, have the right to a PHB.
But the Department of Health and Social Care (DHSC) and NHS England have now published their response to a consultation, which ended last June, on extending that right to other groups and the possibility of extending that to include a right to have the PHB managed through direct payments.
The government response says people “value being involved in the planning of their care, being able to make choices and personalise their support so it best meets their needs”.
And it says the evidence suggests that those who can do that “are more satisfied with their care, have better outcomes, and are able to explore more innovative approaches to meet their needs”.
The consultation also asked for views on whether the government should bring together PHBs and social care personal budgets – and educational needs in the case of disabled children and young people – into an integrated personal budget.
The consultation results suggested widespread support for a further expansion of PHBs, with 87 per cent (330 of 379 people) of those who answered the question saying they believed that autistic people and those with learning difficulties who are eligible for ongoing NHS care should have a legal right to a PHB or an integrated personal budget.
And more than 90 per cent supported extending the right to a PHB or integrated personal budget to those using NHS wheelchair services, with 87 per cent saying this group should also have a right to receive that budget via direct payments, if appropriate.
DHSC and NHS England said their ambition was “to move towards joined up and integrated provision across health and social care” through a “comprehensive model of integrated, personalised care” and with PHBs and integrated personal budgets “a key component” of this plan.
These plans are set out in the new NHS Long Term Plan.
The government and NHS England said they believed that more than 200,000 people would have a PHB by 2023-24, including many from the five groups they consulted on last year.
Although the government is only taking forward legislation on those using wheelchair services and mental health aftercare, it says it will “continue to further explore both the other groups we consulted on, and additional groups who we believe could also benefit from having a right to have a personal health budget”.
Some additional groups that could benefit and were mentioned by those taking part in the consultation included people with dementia, people receiving end-of-life care, and those receiving community equipment.
NHS England said it would continue to work with clinical commissioning groups to “design and test” the use of PHBs for other groups of people and service areas.
Care minister Caroline Dinenage said: “I’ve seen first-hand how personal health budgets can give people a new lease of life, granting them the ability to enjoy their lives to the full.
“These budgets help to join up health and social care services, improving people’s experiences and outcomes whilst ensuring value for money for taxpayers.
“We are therefore extending access so many more people can benefit, a key part of our NHS Long Term Plan which will see personalised care become the norm for millions more.”
28 February 2019
News provided by John Pring at www.disabilitynewsservice.com