Mystery over shock fall in disability benefits paid to older people

“Astonishing” figures released by the government show that the number of older disabled people receiving benefits to help with their daily living costs has plummeted since 2011.

The figures show that the number of recipients of attendance allowance (AA) has fallen from 1.6 million in August 2011 to 1.435 million in August 2017, a fall of about 165,000 (just over 10 per cent) in six years, at a time when the UK’s population of older people has been increasing.

The fall in the lower rate of AA is most dramatic, falling from about 687,000 to 550,000, while the number claiming the higher rate fell from 914,000 in 2011 to 886,000 in 2017.

The number claiming lower rate AA (£55.65 a week) has continued to fall every year since 2011, although those on the higher rate (£83.10) fell sharply for the first three years but then rose again slightly over the last three years (from 855,000 to 886,000).

AA is non-means-tested and is designed to help with disability-related daily living costs, and is available to those 65 or over who do not already receive personal independence payment (PIP) or disability living allowance.

Some other benefits can also increase if a claimant is receiving AA.

The Office for National Statistics said last year that the percentage of the population that is 65 years or older was growing and “projected to continue to grow to nearly a quarter of the population by 2045”, with the proportion of the overall population – which increased by more than four million – who are 65 and over rising from 15.9 per cent in 2005 to 17.8 per cent in 2015.

The continuing controversy over PIP, originally introduced by the coalition government with the intention of restricting spending on working-age disability benefits, has meant there has been little attention paid to spending on AA.

But the figures, released by Sarah Newton, the minister for disabled people, to Labour MP Chris Ruane, have caused alarm among campaigners because the growing population of older people would suggest the number of AA claimants should also be increasing rather than falling.

Previously published Department for Work and Pensions (DWP) figures, which show the number of older disabled people eligible for AA but not necessarily receiving it – which could happen for those who have spent a certain period in hospital or are receiving council-funded support in a care home – appear to show that the peak came shortly after the coalition came to power in 2010.

This suggests there could have been a secret attempt to restrict spending on AA, say campaigners.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “At a time when we’re constantly told we have an ageing population it seems astonishing that the number of people getting AA has fallen so dramatically.

“The only reasons I can think of to explain this phenomenon are that for the first time in decades people are dying younger due to austerity and that secret changes to the qualifying guidelines have been sneaked through somewhere at some time.”

Caroline Abrahams, charity director at the charity Age UK, said: “Given that longevity is increasing, it is surprising to hear that the number of those claiming attendance allowance has fallen.

“This is a really important benefit for older people with a long-term illness or disability, helping them to pay some of the additional costs that they face and remain independent at home.

“We are concerned that many older people who should be receiving this vital support are missing out and would urge anyone who thinks they may be eligible to get in touch with Age UK to arrange a benefits check.”

Ruane, the MP for Vale of Clwyd, told Disability News Service: “For vulnerable people who are coping not only with the rigours of old age but also the difficulty of disability, attendance allowance is a vital benefit which can help pensioners enjoy a better standard of life in retirement.

“However, this response does highlight a worrying trend; 165,256 fewer people are now receiving attendance allowance than six years ago.

“With an ageing population these figures don’t necessarily add up and we need to examine whether those who would be entitled to attendance allowance are actually being encouraged and supported in applying for this financial assistance.

“We need to ask whether the Department for Work and Pensions is actually targeting those who should be benefiting from attendance allowance or question whether obstacles are being put in the way of potential applicants as they are with other forms of benefit such as PIP.”

A Department for Work and Pensions spokeswoman said: “The government has made no significant changes to attendance allowance rules over the last few years and has no plans to cut spending on it.

“Expenditure on attendance allowance was £5.6 billion in 2016-17 and is forecast to rise to £5.9 billion by 2021-22.

“The number of people claiming AA can fluctuate due to demographic and other societal changes.

“Also, people over 65 with care needs can continue to receive DLA or PIP, so it’s not right to just look at AA in isolation.”

1 March 2018



DPOs ask May for meeting over lack of progress on UN convention rights

Disabled people’s organisations (DPOs) have accused the government of maintaining a “head-in-the-sand denial” of its failure to protect disabled people’s human rights.

The criticism came from a coalition of DPOs from across the UK as they wrote to the prime minister, Theresa May, to question the lack of progress in the six months since the UN delivered a “damning” verdict on her government’s record on disability rights, and to ask for a meeting to discuss their concerns.

The UN committee on the rights of persons with disabilities (UNCRPD) told the UK government in August in its “concluding observations” that it needed to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights.

In its review of the UK’s implementation of the UN Convention on the Rights of Persons with Disabilities in Geneva – in which members of the coalition played a significant role – the committee raised concerns and made recommendations on all but three of the 33 treaty articles the UK could have breached.

The committee made the highest number of recommendations for improvements it had ever issued for a country undergoing the review process, while the committee member who led the review warned the UK was “going backwards” on independent living.

But since the concluding observations were published six months ago, there has been no sign of a response from the UK government, which has also failed to work with DPOs on how it could improve its record.

Now the coalition of the country’s leading DPOs has written to the prime minister to express its alarm at this lack of action, and to call for a meeting with her.

Among the coalition are the Reclaiming Our Futures Alliance (ROFA), Inclusion Scotland, Disability Wales, Inclusion London, Black Triangle, People First (Self Advocacy), British Deaf Association, and Disabled People Against Cuts.

Among key concerns highlighted by the UN committee, which the government has so far failed to act on, says the coalition, is the need to enshrine the UN convention into domestic law as the UK leaves the European Union.

Other concerns include the lack of resources to implement the Equality Act; the need for a “fully resourced action plan” to implement the UN convention across the UK; and work to ensure rights to independent living, employment and an adequate standard of living and social protection.

The coalition has told May that the UK had “previously been seen as a leader on disability rights by many countries around the world and therefore has a ‘special obligation’ to set world leading standards on the treatment of disabled people and their inclusion in society”.

But the coalition also told May that the UN committee concluded that this “leading position has been lost”.

Tracey Lazard, chief executive of Inclusion London, a ROFA member, said: “Six months on from the UN disability committee’s damning verdict on this government’s failure to protect and progress disabled people’s rights, things continue to get worse, not better, for disabled people.

“The government appears to be maintaining its position of blanket denial that there is anything wrong, dismissing our lived experience, the UN findings and failing to act on any of the recommendations put forward in the committee’s concluding observations.

“This state of affairs cannot continue.

“Disabled people’s organisations from across the UK are calling on the government to recognise the very serious concerns identified by the UN disability committee and to use the concluding observations as an opportunity to begin working with, not against, disabled people, so we can get our rights, inclusion and equality back on track.”

Members of the coalition also contrasted the failure of the UK government to work with disabled people and their organisations with the actions of the devolved Welsh and Scottish governments.

Dr Sally Witcher, chief executive of Inclusion Scotland, said: “It is quite astonishing that the UK government should persist in its claim that it remains a global leader on disabled people’s human rights, despite the UN committee’s damning indictment of their record and incontrovertible evidence of the ‘human catastrophe’ austerity cuts have had on disabled people’s lives.

“While the Scottish government has taken a much more positive approach, the impact of the UK government’s failure to take seriously our human rights is nonetheless starkly felt by disabled people in Scotland, particularly with regard to disability benefits.

“The Scottish government frequently involves disabled people in policy-making and has published a plan for the delivery of our human rights.

“Although we do need to see more progress on implementing that plan, it is heartening that the Scottish government has committed to take action.

“In contrast, the UK government seems determined to keep its head buried firmly in the sand, refusing even to acknowledge what is blatantly obvious – that they have repeatedly trampled on our human rights and thereby devastated the lives of very many disabled people throughout the UK. This cannot be allowed to continue.”

Rhian Davies, chief executive of Disability Wales, said the Welsh government had responded to the concluding observations with “continuing dialogue with disabled people and our organisations” through the ongoing review of the Framework for Action on Independent Living.

But she said that “as a devolved nation, it is not possible to entirely mitigate the impact of UK austerity policies, so we join forces with our sister organisations across the UK in calling for urgent action from the prime minister in our quest to safeguard disabled people’s human rights in Wales”.

A Department for Work and Pensions spokeswoman said the government’s response to the concluding observations would be published later this year, while Number 10 “will be responding to the letter in due course”.

She said in a statement: “The UK is a recognised world leader in disabled rights and equality and as a share of GDP, our public spending on disability and incapacity is higher than all other G7 countries bar Germany*.

“Not only do we spend over £50 billion a year to support disabled people and those with health conditions – more than ever before – but we also offer a wide range of tailored and effective support, which this report fails to recognise.

“Our focus is on helping disabled people find and stay in work, whilst providing support for those who can’t.”

*The other five G7 countries are the USA, Japan, France, Italy and Canada

1 March 2018



Shock and dismay over death of disabled woman abandoned without care

User-led organisations have reacted with shock and dismay to the “scandalous” failings of a council and care agencies that led to a disabled, terminally-ill woman being abandoned without any personal care just a few days before she died.

Anne Savidge was told by Portsmouth City Council last December that there were no longer any of 18 care agencies in the city who were prepared to provide her with services.

This week, four user-led organisations have spoken of their concern at what happened, the “irresponsible buck-passing” of some of the agencies, the failings of Portsmouth City Council, and the impact of her death on other service-users in the city.

Disability News Service (DNS) has established that over what appears to be a period of about two years, all 18 different agencies told the council that they were not prepared or able to provide Anne Savidge with personal care.

For many of them this was because she had been verbally abusive to their staff, while Savidge had told other agencies she no longer wanted to use their services.

As a result, on 10 December she was left without any personal care, even though the council knew she had high support needs, was terminally-ill with cancer, and had been assessed as needing two-and-a-half hours of support a day.

Although she continued to receive healthcare treatment from a district nurse – and some emergency help from a disabled friend, Geoff Holt, and his wife – all the council-funded help she had been receiving with washing, dressing and toileting, and support with food and medication, was withdrawn.

Six days later, she was admitted to hospital, where she died on 21 December. Her funeral took place yesterday (Wednesday), with Holt delivering a eulogy.

He had highlighted the circumstances of her death at a council meeting earlier this month, which forced the leader of the Conservative-led council to order an inquiry.

Holt told the council: “Anne sat there, mostly in her wheelchair, for five days, in pain, her bladder tumour now oozing blood on her clothes, no food, frightened to drink because she would wet herself, not even having her hands and face washed.

“She was dehydrated through not drinking, she was toxic with drugs, including morphine, not to mention the toxicity of her cancer.”

He added: “She was dying, she was frightened, she was in pain, she was alone with reduced mental capacity, and she had no one to even come in and fulfil her basic care needs.”

By 12 December, he said, there had already been “washing-up growing mould in the sink and soiled clothing and bedding cluttering up her home” and his friend had not washed for days.

Lynne Rigby, principal officer of Portsmouth Disability Forum, who knew Anne Savidge, told DNS this week that her death had had a significant impact on many other service-users in the city, who were now “expressing their own concerns about what might happen to them if they were in a similar circumstance”.

She said she was “very shocked and saddened that this has occurred” and added: “We are aware of numerous people who live on their own and have quite difficult situations.

“It really does frighten them. The people I have spoken to are not people who frighten easily.”

The forum now plans to contact the council’s adult social care department and ask what it plans to do “to allay these concerns”.

Rigby said people had told her, following Savidge’s death, that care agencies should be aware that many impairments and conditions have an impact on a person’s behaviour and that staff “should be trained to recognise and to understand that”.

She said: “From what I have heard and interpreted she was being verbally abusive; that’s not nice, but people moan and shout and groan and swear and everything.

“She was a little lady and she was in a wheelchair, profoundly disabled.

“I find it a little hard to comprehend that somebody could be so badly affected by anything said or done that they would not be able to continue to help.

“We really, really must learn from this and make sure nobody else finds themselves in the same circumstances, whether a disabled person or not.”

Ian Loynes, chief executive of SPECTRUM Centre for Independent Living, which is based in nearby Southampton, said: “SPECTRUM views with dismay the catalogue of irresponsible buck passing of the 18 care agencies involved and of the council in failing to spot these trends and addressing the inevitable safeguarding consequences.

“Anne was failed by the system, a system which valued profit and loss over human life; a system which farms out care to the cheapest provider and a system which does not have a collective responsibility of duty of care or moral compass.

“Anne was deserted and badly let down in her hour of need.”

Professor Peter Beresford, co-chair of the national service-user network Shaping Our Lives, said: “We can only hope that there will be the most thorough independent inquiry into the particular circumstances of the withdrawal of support in the case of Anne Savidge.

“The truth is she should have been entitled to specialist palliative care support, including social work support, but does not seem to have been receiving it.

“End of life care issues are complex and demand the greatest skill and expertise, which is why the modern hospice movement was pioneered.

“Private care agencies often don’t have the skills or resources that are needed.

“If prisoners who are dying can be brought out of incarceration to get quality care from specialist hospices as they actually nowadays do sometimes, I can’t see what justification can be offered for the failure to offer Anne Savidge appropriate and adequate support and care in her last days.”

Beresford said the death of Anne Savidge also highlighted wider and continuing concerns about the social care crisis.

He said: “The brutal truth is that social care is a means and needs-tested service still operating according to the punitive principles of the Victorian poor law.

“There are no clear and principled entitlements to social care. Instead the system still effectively operates on the basis of archaic ‘eligibility criteria’ which are really just about not spending beyond the inadequate cash in the kitty provided by central government.”

Anne Pridmore, director of Being the Boss, which supports disabled people who employ personal assistants, said the way Anne Savidge had been treated in the days before her death was “scandalous”.

She said: “However abusive she was, to just leave a person like that to, in the end, die without any care… I feel extremely angry that it got to that situation in this country.”

She said she was concerned that the council did not appear to have had any kind of back-up plan to put in place when the final agency withdrew.

Pridmore also said that Savidge might have had good reasons to refuse some of the care that she had been receiving, and she questioned whether she had had an advocate to support her.

She said it appeared to show that “if people don’t toe the line you just leave them to die. It’s disgusting.”

But she also said it was becoming much harder to find “good people” working in care because the wages are so low.

She has been advertising a personal assistant post for more than 12 months.

DNS has been able to contact all but one of the 18 agencies this week, although only three were willing to speak on the record.

Erica Longyear, care and operations director of Bluebird Care, was critical of the agencies that stopped providing care to Anne Savidge.

Her agency itself stopped providing care to Savidge in July 2016, but about eight months later it was taken over by a larger organisation.

Longyear, who was not with the agency in 2016, said records showed that care workers “were asking not to go in because she was verbally aggressive, she was telling us that she didn’t want Bluebird Care.

“From what I can read she was either refusing our care or our carers were refusing to go back in there.”

She said the council should have had a back-up plan to put into effect when the final agencies dropped out, but should also have provided agencies with support or training.

She believes that Savidge’s aggressive behaviour was probably linked to a health condition.

Longyear said that “better understanding of needs, person-centred to the individual, would lead to less withdrawals by domiciliary care agencies”.

And she said the council should have been able to predict what would eventually happen by the time the fourth or fifth agency had pulled out.

She added: “There must have been more we could have done for this lady. She could have had her care needs met.

“There could have been many reasons why she was behaving in that way. To her, it cannot have been a very nice feeling to keep having to change provider. It must have been like a revolving door.

“Problem customers aren’t problems, we just don’t understand them. Everyone should be entitled to care.”

Julie Ronson, co-owner of Sisterly Care, said her agency provided services to Savidge for one week in 2016.

She said: “She was a very hard lady to deal with, very aggressive and rude to the staff that went in.

“She terminated the care because she said it wasn’t to her standard.

“We deal with people who are in that similar situation on a daily basis and you make allowances.

“It is a very, very sticky situation. It is sad to think somebody is not supported at the end of their time, but you can only do as much as that individual allows you to do.

“It didn’t matter how we changed or altered things, it still wasn’t good enough. That was her choice. She has to take some responsibility, surely.

“I have dealt with the council. I am sure they went above and beyond to try and help that lady.

“She was a very, very difficult client. In over 30 years of care I have never had somebody quite like her.

“Yes, plans should be in place to stop it ever happening again, but people need to take some responsibility for the decisions that they make.”

A third agency, Kare Plus, said it had not been able to provide care to Anne Savidge because she had been living in an area of the city the company did not cover.

1 March 2018



Former long-stay residents plead with cemetery developers: ‘Let our friends rest in peace’

Campaigners are fighting development plans that they fear could disturb the remains of some of the more than 1,000 disabled people who are buried in the former grounds of a long-stay hospital.

People with learning difficulties who are former residents are among those concerned about plans to build a crematorium on part of the site of the Calderstones Hospital Cemetery, in Whalley, Lancashire.

They and other self-advocates spoke out at this week’s annual conference of the North West Regional Forum, which represents people with learning difficulties from across the north-west of England.

During the conference, more than 250 delegates shouted out: “Let our friends rest in peace!”

The forum has already written to the Bishop of Blackburn to protest about the plans.

Four former Calderstones residents, who all have friends buried in the cemetery, spoke out this week during the conference to raise their concerns.

Patrick Burke said it was “not at all right” and the graves “should be cleaned and looked after”.

He said: “Would the bishop like that? He wouldn’t like his gravestone taken away and built on.”

Another former resident, Andrew Barber, said: “Friends buried on consecrated ground should be left alone and not touched.

“Lived a life they shouldn’t of in the first place. Let our friends rest in peace.”

A third former Calderstones resident, John Thompson, added: “I think not supposed to take graves out at all, not right to do that.”

The Calderstones graves have been allowed to become derelict and overgrown, with nearly all the gravestones having previously been removed by a former owner after the two chapels on the site were damaged by vandals.

This contrasts with the immaculately-tended war graves cemetery nearby, which was also previously part of the hospital.

A fourth former Calderstones resident, Daniel Doherty, said: “We’re treated second class citizens.

“Would anyone else be treated like that? It’s unfair, it’s a disgrace. Offensive to families and friends.

“War graves clean and well-kept. What’s the difference between them and us? Nothing!”

The current owners of the cemetery, All Faiths Remembrance Parks, stressed this week that its plans would significantly improve the cemetery site.

Calderstones, now renamed Mersey Care Whalley, is the last remaining long-stay hospital in the UK – although it has now been recategorised as a “medium and low secure facility” – following the national de-institutionalisation programme that began to accelerate in the 1980s* and was given added impetus by abuse scandals such as those at Winterbourne View, near Bristol, and Budock Hospital, in Cornwall.

Between 1921 and 1989, there were 1,171 recorded burials in the cemetery of people with learning difficulties who had been institutionalised at Calderstones – with many of the graves containing more than one resident – including the latest 211 who were first cremated before their ashes were interred in the cemetery between 1977 and 1989.

Three other people are believed to have had their ashes interred in the cemetery, while at least 13 babies who were born to former residents are thought to be buried in unmarked graves.

Now campaigners fear that some of these remains could be threatened by the plans to build the crematorium on the Calderstones cemetery site, which the NHS is believed to have sold to developers in 2000.

One grave, belonging to a former resident called John Newton, who died in 1925, has already been covered with the foundations of the proposed crematorium’s carpark.

The developers have now fenced off the area where John Newton is buried.

Lynn James-Jenkinson, director of the North West Training and Development Team (NWTDT), which supports the regional forum and has had close links with Calderstones residents since NWTDT was founded in 1984, said she had been approached by distressed former Calderstones residents, who told her: “My friends are in there.”

She said: “This would not be happening to any other group of people.

“People with learning disabilities have been so disrespected in their life so we can’t let them be disrespected now.”

Mel Diack, a local resident who is campaigning to halt the development, said he was concerned about the plans.

He said: “The people who are buried in the cemetery should never be forgotten.

“Nobody is answering the fundamental questions. It is a consecrated site. It is absolute sacrilege.”

Angela Dunn, general manager of All Faiths, admitted that the grave of John Newton had “inadvertently” been covered over as part of preparatory work to build a new carpark.

But she said it would now be “landscaped over” rather than being left as part of the carpark.

And she said she was 100 per cent convinced that this would not happen to any more graves and that the crematorium was being built in an area where there had never been any burials, so there would be no need for any remains to be moved to new locations.

But Dunn confirmed that All Faiths would be approaching the Church of England Diocese of Blackburn to ask it to de-consecrate part of the cemetery site.

This is believed to be because the law states that a crematorium cannot be built on consecrated ground, although Dunn declined to confirm this.

It is also an offence under the Burial Act 1857 to remove buried human remains without a licence from the Ministry of Justice (MoJ).

MoJ has confirmed that it has not issued any exhumation licences granting permission to remove any human remains from the Calderstones site.

Last November, MoJ received a report that buried human remains were being disturbed, or were about to be disturbed, in the Calderstones cemetery.

MoJ said the informant was told to contact the local police, which investigated and found that no human remains had been disturbed or removed.

Dunn said: “Absolutely we understand the concerns. We did have a meeting in December to listen to what the concerns were.

“They asked that there were no exhumations, they asked that the people that were buried in there were remembered, and they have asked that the three headstones that are on site at the moment are kept on site somewhere, and we have agreed to all of that.

“We do understand people’s concerns, but I think when they see what they get when the crematorium is completed and everywhere is landscaped I think they will find it is a really fitting park and a fitting resting place for the people in the cemetery.

“It is going to be really beautiful parkland which will bring peace and comfort to those who have got family members in there and for those who will have funerals in the future.”

She said she had used burial records to collate all the relevant information and locate all the graves – which have now been taped off – as well as the former garden of remembrance, and that this would ensure relatives would in future be able to find the graves of their loved ones much more easily.

There are also plans to establish an electronic book of remembrance to record everyone who was buried in the cemetery, including the 211 people whose ashes were interred in the garden of remembrance, and to draw up a plan to show the lay-out of the cemetery.

Dennis Buckley, a retired social worker with close connections to the hospital, knew several of those buried in the cemetery and played a significant role in the resettlement of hundreds of people from Calderstones and other long-stay hospitals in the north of England.

He said he still had concerns about more than a dozen graves that he believed were threatened by the plans for the carpark and access road.

He said that Dunn had worked “extremely hard” with him to draw up a list of the 211 people whose ashes had been interred in the garden of remembrance, but that she had been instructed by her superiors to have no further contact with him before the list was completed.

All Faiths has declined to comment on this.

A spokesman for the trust that runs Mersey Care Whalley, Mersey Care NHS Foundation Trust, said: “We understand the cemetery has changed ownership a number of times in the 28 years since the former Calderstones site last had any responsibility for it.

“The trust is aware of the local sensitivities and we offer our respects to the memories of those buried there.”

The proposed crematorium had originally been granted planning permission by Ribble Valley Borough Council in 2009.

The scheme was later modified, in 2015, following concerns raised by Whalley Parish Council, so that no remains of former Calderstones residents would have to be exhumed.

A council spokeswoman said: “The development will restore a derelict site, with improved public access and a permanent memorial to, and comprehensive record of, those buried there.

“It will also provide a much-needed facility in a rural area, which has poor public transport, an above average number of elderly residents and where the nearest crematorium is over 15 miles away.”

She said that the issue of whether land is consecrated “is not a material planning consideration” for the council.

*Campaigners began attempting to persuade the government to close long-stay hospitals for people with learning difficulties in the late 1940s.

In 1951, the National Council for Civil Liberties released a report describing the regime brought in by the 1913 Mental Deficiency Act – which would eventually confine hundreds of thousands of people with learning difficulties to long-stay NHS hospitals – as “one of the gravest social scandals of the twentieth century”.

The Department of Health and Social Security announced in a white paper as far back as 1971 that long-stay hospitals should gradually be closed down.

1 March 2018



Handbook offers Labour new DEAL on addressing widespread discrimination in the party

Disabled party activists are hoping a new handbook will force Labour to confront its failure to comply with its legal duties to prevent disability discrimination.

Members of the Disability Equality ACT Labour (DEAL) campaign, all Labour members, say the party has repeatedly failed to comply with its duties under the Equality Act.

To address that failure, they have compiled a guide that can be used by staff, elected officers, candidates and volunteers throughout the party.

They point out that Labour has an obligation under the Equality Act 2010 to provide reasonable adjustments for disabled party members, and if it fails to do so it will be guilty of unlawful discrimination.

The act applies right across the party, the guide says, to branches, constituency Labour parties (CLPs), and the party’s regional and national structures, and to meetings, events, campaigns and political activities.

Earlier this month, Emily Brothers, one of the handbook’s authors, called for action to address disability discrimination within the party and the “shameful” lack of disabled people on its ruling national body.

And last September’s annual conference saw calls for the party to end years of “blatant discrimination” against its own disabled members, while there were also complaints about “inexcusable” access failings at the conference in Brighton.

The handbook warns that the party “must create a comfortable, dignified environment for disabled people”, and if it does not do so it will be guilty of harassment.

The handbook says: “Many disabled members are excluded from Party activities, events and decision making processes.

“Some have experienced branches refusing direct requests to make reasonable adjustments.

“Further, elected officers of Party structures have argued against making reasonable adjustments such as online participation at meetings, or being accompanied to meetings by a carer or personal assistant who may or may not be a Party member, because they require changes to internal custom and practice.”

One of the disabled party activists who has experienced this kind of discrimination is Sophie Talbot, a party member in a London branch, who joined in 2016, and is one of the handbook’s 20 authors, who also include barrister Catherine Casserley, a leading expert on discrimination law.

Talbot has borderline personality disorder, depression and anxiety, and finds it incredibly difficult to leave her flat alone, so asked her local branch if she could attend meetings online.

She told the branch that it would cost less than £100 to buy a microphone that was good enough to make this possible but was faced with repeated excuses; she was told that meetings were supposed to be “confidential”, or that there were problems with the wi-fi.

She said: “Although the party was saying it was moving into the digital age, all I got back was how this wasn’t possible. It didn’t make sense.

“I cottoned on. This wasn’t about the tech, this was about custom and practice.

“People were used to doing things in a particular way and no-one was willing to change, even if that meant blatantly discriminating against a disabled person.”

She was also prevented from voting online for councillor candidates, “a really important vote and one I was desperate to take part in”.

Talbot said the party had so far “shown complete ignorance” of its duties under the Equality Act and that its non-disabled members “don’t seem to give a damn – or worse, feel threatened by the potential of ensuring that disabled members can fully participate”.

She said: “I’ve started thinking that disability equality requires a shift in people’s thinking to such a degree that suddenly real democracy and participation become a threat to outdated ways of working and entrenched small-minded thinking.”

She added: “I hope the handbook opens people’s eyes. I hope that the majority of people in the party who really want change use this handbook to help make it come about.”

Senior figures in the party have yet to respond to DEAL after being sent the handbook, and Talbot said she felt “majorly let down” by the failure to even acknowledge their email.

Previous attempts by the party to address its Equality Act duties through guidance have failed because it is not being followed, says DEAL.

It believes that Labour, and other political parties, “can and must up their game with respect to disability equality, and compliance with the law”.

The handbook includes sections on the law as it affects the party; proposals for how the party can comply with the act; and a case study which looks at how a party region took its responsibilities under the act seriously when faced with members who wanted their CLP to stop meeting at an accessible location and move back to the inaccessible venue that used to host their meetings.

Among the proposals for helping the party to meet its duties under the act are to force all disability officers, chairs, secretaries and conference delegates to attend disability equality training.

They want the party to set up a National Inclusion Fund, to which CLPs could apply for funding to pay for equipment such as hearing loops or a British Sign Language interpreter to attend meetings.

They also want there to be annual audits of party events, meetings and activities to examine how disabled people have been enabled to participate, and then use the results to make legally-required reasonable adjustments.

They want all campaigning activities to be made inclusive and accessible, and encouragement for disabled members to set up a section of the party in the same format as Labour’s women’s and black and minority ethnic members’ sections.

Although she is critical of her own party, Talbot says she and her fellow campaigners “would not stand a chance” with the campaign in any other party, although she accepts that the Liberal Democrats “have some good guidance” but are “a spent force”.

She said: “The Tories aren’t even worth mentioning, it would be a cold day in hell before they gave the slightest nod to anything like this handbook in their top-down excuse for a democratic party.

“But Labour, Labour is our hope. Labour is our home. Labour is our future. And that’s why we are fighting for this.”

The Labour party had failed to comment on the handbook by noon today (Thursday).

1 March 2018



DPOs to write to minister over exclusion from social care meeting

Disabled people’s organisations (DPOs) are to write to the care minister to protest at her decision to organise a meeting to discuss the future of working-age social care without inviting a single DPO.

The failure to invite any DPOs to the “roundtable” event emerged last week after the disabled crossbench peer Baroness [Jane] Campbell had asked the government to extend the scope of its green paper on older people’s social care to include working-age disabled people with care needs.

The green paper was announced in November, but it frustrated campaigners when the government revealed that it would examine the care needs of older people, while “a parallel programme of work” would look at working-age disabled people.

The plan to hold a roundtable event was revealed by the junior health and social care minister Lord O’Shaughnessy in his response to Baroness Campbell, and he said that those invited included the charities Mencap and Scope.

Baroness Campbell later discovered that no DPOs had been invited, although she herself has now been asked to attend the event, which was set to take place yesterday (Wednesday).

She had planned to raise her concerns at the exclusion of DPOs at the meeting.

Now the Reclaiming Our Futures Alliance (ROFA) is to write to care minister Caroline Dinenage to express its alarm at the failure to invite any DPOs to the meeting, and is appealing for other DPOs to sign its draft letter.

The letter, drafted by Tracey Lazard, chief executive of ROFA member Inclusion London, calls on the government to ensure that DPOs are “actively involved in the Government’s work-stream to look at social care for working age Disabled people”.

It says: “Our organisations, run and controlled by Disabled people, are able to provide valuable insights into the lived experience of social care users, including an understanding of key barriers and identification of potential solutions.

“There is an important and fundamental difference between the national charities who speak for Disabled people and DPOs where we speak for ourselves.”

The letter adds: “We support concerns raised by Baroness Jane Campbell that a round-table has been organised in Parliament on 28 February to which no single DPO has been invited and would ask for assurances that this exclusion will be rectified going forwards, with meaningful and accessible involvement of Disabled people and our organisations embedded within the work-stream.”

The letter points out that last August’s concluding observations of the UN committee on the rights of persons with disabilities – which had been reviewing the progress of the UK in implementing the UN’s disability convention – called on the UK government to ensure “close collaboration” with DPOs.

The concluding observations also called for “close consultation” with DPOs to draw up “appropriate strategies in the area of social support and living independently”, and for a comprehensive independent living plan to be “developed in close collaboration” with DPOs.

1 March 2018



Absence of stats ‘is killer blow to government’s disability employment pledge’

The failure to provide up-to-date figures showing how many disabled people are in work is a “killer blow” to the government’s pledge to move one million more disabled people into work by 2027, say campaigners.

The Office for National Statistics (ONS) has failed to publish figures on how many disabled people were in employment for the last two quarters of 2017.

The last published figures – drawn from the Labour Force Survey (LFS) – were published in August 2017, but ONS has suspended publication of further updates because of a “discontinuity” between figures from the second and third quarters of 2017.

This had made it impossible for politicians and campaigners to measure how well the government is performing on its disability employment target.

The two previous quarters, January to March 2017, and April to June 2017, had seen the number of disabled people in employment fall by more than 75,000, although it had risen by nearly 600,000 between April 2013 and June 2017.

Marsha de Cordova, Labour’s shadow minister for disabled people, has written to John Pullinger, head of the Government Statistical Service, who has executive responsibility for ONS, to ask for an explanation for the failure to publish the “vital” statistics for the second successive quarter.

She wrote: “Of those who are out of work, the majority are talented and motivated people… But in order to remove the institutional barriers which stop them from working, we need up-to-date information.”

She said the figures were needed to judge whether the government was keeping to its 2017 manifesto commitment to increase the number of disabled people in work by one million.

She was one of two MPs who raised concerns about the failure to publish updated figures during last week’s House of Commons debate on disabled people and economic growth.

Dr Lisa Cameron, from the SNP, said: “It is particularly concerning that the Office for National Statistics has suspended publication of disability statistics from the Labour Force Survey. We should ensure that that matter is addressed.”

Philip Connolly, policy and development manager at Disability Rights UK, said: “The failure by ONS to maintain trend data is a killer blow to the enactment of the government’s promise to move a million disabled people into work and the government must remedy this to restore the credibility of its manifesto commitment.”

New analysis by Professors Victoria Wass and Melanie Jones, of Cardiff Business School, both members of the Disability@Work group of researchers, points out that the analysis of employment rates in the government’s Improving Lives work, health and disability strategy – which sets out its “route map to increasing the number of disabled people in employment” – is based on statistics from the LFS.

They – along with Dr Ben Baumberg Geiger – warned MPs on the Commons work and pensions select committee last year that previous “discontinuities” in 1998, 2009 and 2013 were preventing “a clear analysis of trends over a period of significant policy change”.

Wass and Jones said that further changes would “make tracking the Government’s aspirations almost impossible”.

ONS declined to say whether the suspension was because of an unexpectedly sharp drop in the number of disabled people in jobs, or an unexpectedly large increase.

ONS said in a statement: “ONS has suspended publication of these estimates for subsequent time periods due to an apparent discontinuity between April to June 2017 and July to September 2017.

“ONS is investigating this issue and the dataset will be reinstated as soon as possible.”

A Department for Work and Pensions spokeswoman said: “The Office for National Statistics (ONS) is responsible for the production of statistics on employment of disabled people, published in table A08 on the ONS website.

“The ONS is independent of government.

“Increasing the number of disabled people in employment is a key government priority.

“DWP agrees that to monitor these trends it is important that estimates are comparable over time, and any data concerns are investigated thoroughly.

“While DWP is a key stakeholder for labour market statistics, it does not play any part in collating or preparing the data.

“DWP maintains dialogue with ONS on the use of this data for national policy-making purposes.”

1 March 2018



Government ‘must do more on disability employment’, MPs hear

The government must do more to offer incentives to businesses to take on disabled people as employees, and to tackle the barriers that prevent them finding jobs, according to cross-party MPs.

MPs from Labour, the Liberal Democrats, the SNP and the Conservative party all pushed the government to improve its policies.

Disability Rights UK, which helped secure the debate, said afterwards that it was the first time MPs had debated disabled people and economic growth in the main Commons chamber.

Disabled MP Marsha de Cordova, Labour’s shadow minister for disabled people, told fellow MPs that the government had done far too little to remove the barriers faced by disabled people in the employment market.

She said: “It is a matter of serious concern that we have a government who barely speak about removing barriers, while actually creating new ones through their austerity cuts and their punitive social security system.”

She said the disability employment gap – the difference between the employment rates of disabled and non-disabled people – currently stood at more than 31 percentage points, and was even higher for some impairment groups.

De Cordova was among MPs who criticised the government’s Disability Confident scheme, which is supposed to encourage employers to take on disabled employees.

She said it had been “a dismal failure” and “has yet to produce any concrete evidence of results”.

She asked the minister for disabled people, Sarah Newton, how many disabled people had found jobs as a direct result of the scheme, but Newton later failed to provide an answer.

De Cordova told fellow MPs how one deaf man had been offered a job by an employer signed up to the Disability Confident scheme.

But when the employer realised that the man’s Access to Work support would be capped – because of government policy – and they would have to meet the rest of his disability-related workplace costs, the job offer was withdrawn.

She was also critical of language in the government’s Improving Lives work, health and disability strategy, which she said “centres on the idea that employment can ‘promote recovery’, the familiar sounding phrase which says that disabled people and people with chronic conditions would recover if only they tried a bit harder, or were subject to an even tougher system”.

She said: “The government must understand that for too many disabled people, the reality is a social security system that punishes rather than supports them, ​and a labour market that shuts them out rather than being open to their potential and skills.”

Another disabled MP, the Liberal Democrats’ work and pensions spokesman, Stephen Lloyd, called for “specific incentives” for businesses to recruit disabled people.

He said: “The need is greater than ever because with Brexit, whatever side of the divide we sit on, we know that there will be substantial staff shortages over the coming years.”

He suggested the government should impose targets on employers to employ a certain number of disabled people, “or at least to show that ​they have systems and processes and that they have interviewed the requisite number of people with disabilities for every job”.

He said: “I do not want it to be tokenistic, as a lot of people with disabilities have tremendous skills – they just need the opportunity.”

The Conservative MP Bim Afolami called on the government to “work much more closely and intensively with employers to drive change”.

He said: “The government need to work with employers, along with the legislation that is already in place, to help to drive change.”

He was another to call on the government to offer employers financial incentives, possibly through the tax system, to take on more disabled people, “especially in industries where today they may not typically be found”.

Dr Lisa Cameron, who secured the debate and chairs the all party parliamentary group on disability, said the disability employment gap was “large and enduring”.

She said the government’s target to employ one million more disabled people over 10 years was “weaker” than its previous target to halve the disability employment gap.

And she said that evidence on Disability Confident “shows that the scheme does not go far enough, and that it does not result in enough people being employed”.

She added: “It is particularly worrying, therefore, that the Improving Lives command paper uses the scheme as one of its central policies for achieving the government’s target.”

Newton insisted that Disability Confident was “not a failing scheme” but a “growing scheme”, but she admitted the government was considering how to improve it.

She said the government was also “looking at what more we can do to incentivise businesses, and at publishing levels of disability employment, especially for large employers”.

She said the Improving Lives strategy was “absolutely not what [de Cordova] said it was”.

She said: “We are not saying those things, which I am not going to repeat in this House because they are so fundamentally wrong.

“What we are about is recognising the talents of disabled people and making sure there are no barriers and no limits, so that their talents can take them as far as they possibly can.”

Newton said that the government’s new “sector champions” across various areas of the economy were “working to improve access for disabled people to their industry” by “sharing best practice and information, so that more people are confident about employing disabled people”.

She said there were now 600,000 more disabled people in work than four years ago, but the government wanted to go “further and faster”.

Following criticism from both De Cordova and Lloyd over the government’s decision to cut nearly £30 a week from the benefits paid to new claimants placed in the work-related activity group (WRAG) of employment and support allowance, she said there was now £330 million in funding “to arrange new interventions and initiatives for those in the WRAG, so that they can have tailor-made personal support to enable them to take the steps to work”. ​

The government has previously said the WRAG cut will produce savings of more than £1 billion over four years.

Newton said the government had also recruited more than 300 disability employment advisers – replacing some of the hundreds previously removed by ministers – and had begun introducing 200 new community partners “who are able to share their lived experience of disability across our jobcentre network”.

Newton also said that the government’s new enterprise allowance had helped nearly 20,000 disabled people to start up businesses.

1 March 2018


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