Labour conference: Activists set for fight to persuade leadership on independent living

Disabled people have a fight ahead of them to convince Labour’s leadership to accept the need for a universal right to independent living, say activists, despite the annual conference voting overwhelmingly in favour of it becoming party policy.

Sunday’s vote passed a motion that calls for all social care to be provided free – just as healthcare is provided free through the NHS – through a new National Independent Living Support Service (NILSS), and for that to be funded by national progressive taxation.

It says the service would provide a new universal right to independent living that would be “enshrined in law”.

NILSS would be designed by service-users and carers in partnership with local authorities and the NHS, and it would be delivered “as far as possible” by service-users.

The motion originated with the disabled people’s movement and a document drawn up by Disabled People Against Cuts (DPAC) and the Reclaiming Our Futures Alliance (ROFA).

And the party confirmed yesterday (Wednesday) that the vote at the conference in Brighton meant this was now party policy.

But despite the vote there is no guarantee that the policy will be included in the party’s general election manifesto, which will instead be drawn up through what is known as a “clause five process” (PDF, see page four).

Doubts about the party’s commitment to a legal right to independent living, as demanded by article 19 of the UN Convention on the Rights of Persons with Disability, appeared to be confirmed when the party announced hours after Sunday’s vote that a Labour government would introduce only free personal care, and only for older people.

This would mean free support for getting in and out of bed, dressing, eating and bathing – but not for wider support that would ensure independent living – and just for the over-65s, as part of Labour’s plans for a National Care Service in England.

The policy falls significantly short of the demands in Sunday’s motion.

Two weeks ago, ROFA warned that Labour was on a “collision course” with the Equality and Human Rights Commission and the UN because of its failure to accept the need for a legal right to independent living.

This week’s events suggest ROFA was right to issue that warning, even though many Labour activists have attacked Disability News Service for reporting criticism of a party that is not yet in power.

Mark Harrison, a ROFA member who helped draw up the NILSS strategy, told a fringe meeting organised by DPAC in Brighton that there was “a real contradiction” between Labour’s announcement on personal care and the motion passed by party members.

He said disabled activists needed to “move the Labour party and the shadow cabinet away from that concept of social care for the elderly and employing care assistants in local authorities”, and towards the NILSS strategy, which was backed by the disabled people’s movement.

He said: “We are having discussions in the next week with the leadership in the Labour party on why we aren’t grateful for their announcement on social care, why we think it’s not a very good idea, and what we should replace it with.

“Our challenge is to get the Labour leadership to adapt [NILSS] as a big manifesto commitment.

“It is a big, bold vision. It has to be in the manifesto because partial commitments to funding personal care for older people is not going to hack it.”

Sean McGovern, co-chair of the TUC’s disabled workers’ committee, told the fringe meeting that he did not believe shadow chancellor John McDonnell – who announced the personal care policy to conference on Monday – was against their NILSS demands but was “being pulled from different directions”.

McDonnell has said he will meet with disabled people’s organisations – including DPAC and ROFA, and trade unions – to discuss the situation.

McGovern said: “I think we have got a fight ahead of us. I think it’s a fight we can win.”

He added: “I do think we need to get into the people who are in positions of power.

“Hopefully sooner rather than later we can get a round table meeting with John McDonnell.”

He told the meeting that the social care system was “broken”.

McGovern, who works for Disability Advice Service Lambeth in its direct payments team, said: “The people I work with… they are disabled people like us, they are people who want to live independently but they are not allowed to live independently because they are getting care packages of seven hours a week.

“You’ll get somebody who has quite complex independent living needs will be getting 45 minutes in the morning, half an hour lunchtime, half an hour in the evening and maybe 45 minutes at bedtime, whatever that means.”

Michelle Daley, chair of ROFA’s international committee, co-chair of Independent Living Alternatives and interim director of The Alliance for Inclusive Education, said it was vital that article 19 was implemented.

She said the current system was not about independent living and offering a “decent life” but instead was “about people just existing”.

On Sunday, Michelle Pointer, a disabled party member from Aylesbury CLP (constituency Labour party), warned the party conference – in proposing the successful social care motion on Sunday – that social care had been “decimated” in the last decade, and that disabled people were “not able to live the independent lives they deserve”.

She said the new service should be “similar but different to the NHS but of the same standing”, and that it needed to be “enshrined in law for there to be a universal right to an independent life”.

Punita Goodfellow, from Newcastle upon Tyne Central CLP, who seconded the motion, credited ROFA and DPAC with the idea.

She said the UN had been “damning” about the state of social care and “the indignity suffered by millions of people in this country”.

She said it was “one of the most pressing and urgent injustices suffered by invisible millions”.

McGovern, who two weeks ago proposed a similar motion at the Trades Union Congress – which was also successful – told conference that social care was in “absolute collapse”.

He said the NILSS idea had been proposed by the disabled people’s movement.

Speaking as a Unite delegate, he told the conference: “We are calling for disabled people to have a universal right to independent living and a service funded through a progressive general taxation system and free at the point of need.”

He added: “Independent living is not a treat. It is not a luxury resource given to disabled people.

“Independent living gets disabled people to the start line of the race. Support the right of disabled people to enter the race of day-to-day living.”

Fran Springfield, co-chair of Disability Labour, told a Disability Labour fringe meeting later in the week that she had spoken to McDonnell and was told that he wants a meeting next week on the NILSS.

She said: “That is something Disability Labour have been campaigning on. It is something that really, really needs to happen. A national care service is not good enough.”

26 September 2019


Labour conference: Party leadership is oppressing disabled people, say activists

Senior Labour figures have been accused of discrimination and “oppression” of their own disabled members, after failing yet again to act on the barriers created by the party’s structures, policies and actions.

Some disabled party members are now set to protest outside the next meeting of the party’s national executive committee (NEC) over its failure to ensure equality for disabled people.

The Labour party has been repeatedly criticised by its disabled members for failing to provide them with the support they need.

Last year, a survey of disabled party activists revealed “very disturbing” levels of disability discrimination throughout the party, with three-quarters of those questioned believing there was disability discrimination at all levels of the party.

Earlier last year, members of the Disability Equality ACT Labour (DEAL) campaign said the party had repeatedly failed to comply with its duties under the Equality Act.

And at the party’s annual conference in Brighton in 2017, the party faced pressure to put an end to years of “blatant discrimination” against its own disabled members.

The latest criticism was delivered in front of a key ally of Labour leader Jeremy Corbyn, Katy Clark, at a fringe meeting at this week’s annual conference organised by Disability Labour, which represents disabled party members.

Clark headed Labour’s controversial democracy review, which reported last year, although she said she had not been involved in its implementation.

She was at the fringe meeting to describe some of the measures recommended by the review to address barriers faced by disabled members, including equality training for all constituency and branch officers, an equality audit of party conferences, and more resources for equality training.

She told the meeting: “We need to hear the voice of disabled members within the Labour party.”

But disabled party members were scathing of the party’s efforts to address their long-standing concerns.

Richard Rieser, disability officer in Islington North, Corbyn’s constituency, and a prominent disabled campaigner and consultant on inclusive education and disability rights, said there had been no “clear steer” from the party’s national executive on implementing the democracy review.

He said: “I would suggest that Disability Labour organise some lobbies of disabled members of the next few NEC meetings until they take us seriously.”

Fran Springfield, co-chair of Disability Labour, told him: “Yes, that is something we will be doing and we look forward to you joining us.”

Clark said the next meeting of the NEC was on 23 November.

Rieser said: “In the world of work, all of these adjustments were made 20 years ago.

“Here we have the Labour party, claiming to stand for equality, failing to make the adjustments that it needs to be making.

“I am surprised that no member has yet taken the party to court because it is breaking the law all the time and it is just not acceptable.

“The leadership have to understand that this is not a nice little charitable move they are making to us. We reject charity. We want equality.

“And then they have the cheek to say the Labour party supports the social model of disability.

“Perhaps they need equality training to understand what that means. Disability is an oppression and if you are part of the problem, you are an oppressor.

“Unfortunately, most of the leadership of our party are oppressing disabled people and that is not acceptable and really needs to be tackled.

“The first people who need to be trained is the NEC, the second is all of the MPs and all of the councillors, and the third is all of the branch officers.”

He added: “If this was the situation with BAME [black, Asian and minority ethnic] members, there would be an outcry, quite rightly, but we go on tolerating it because we have tolerated it all of our lives, but we mustn’t tolerate it any more, it has to stop.

“Our anger needs to be out there and it needs to be seen publicly.”

Cllr Michelle Sweeney, a disabled member of St Helens council and a former probation officer, said she had been left “absolutely appalled” by her experience of equality within the Labour party as a new councillor.

She said: “As a disabled woman, every day you face barriers. And when you come into a party and the barriers are even more challenging, you feel often that you’re fighting from within.

“It is really, really frustrating, when I think of disabled people and what they have to struggle with; we will lose them because they will think, ‘what is the point if I don’t feel I have got access into these spaces?’”

She added: “I have been saddened by just how poor things are in this conference. The accessibility is just not great at all. It’s pretty frustrating to say the least.”

Clark said she had been told the next five Labour party annual conferences would be held in Liverpool, which was more accessible than Brighton although it “also has its problems”.

She said Brighton conferences always result in the party being “inundated with complaints about access issues”.

Christine Tongue, the disability officer for South Thanet constituency Labour party, said: “We can’t even get into buildings that are accessible.”

She said one disabled member fell from his wheelchair on the way out of a party meeting in South Thanet because “the ramp was rubbish”.

She added: “We don’t have funds to build accessible buildings and we don’t have access in the constituency.”

She said there was a need for funding to invest in ensuring the accessibility of buildings owned by the party.

She added: “If they can’t get into meetings, they are definitely not going to stand for council.”

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

26 September 2019


Labour conference: De Cordova ‘facing oppression’ in parliament over support needs

A disabled shadow minister has accused the public body that provides MPs with financial support of “oppression” and “discrimination”, after it refused to meet some of the disability-related costs of doing her job in parliament.

Marsha de Cordova described the “worry, anxiety, stress and tears” caused by the actions of the Independent Parliamentary Standards Authority (IPSA) as she tries to perform her duties as a constituency MP and Labour’s shadow minister for disabled people.

De Cordova, who has a visual impairment, was speaking at a fringe event organised by Disabled People Against Cuts as part of The World Transformed, a four-day festival that ran alongside Labour’s annual conference in Brighton this week.

The meeting was called Piss on Pity: Disability Oppression, and De Cordova said of the title: “We do need to talk about this.”

She said she had decided to discard the speech she had been planning and talk instead about her recent experience of oppression in the House of Commons.

She said 2019 had been “a challenge” as a disabled MP, and she added: “As a disabled MP I should have the right support, and reasonable adjustments need to be made.”

She said that IPSA had failed to pay for the extra paper and ink costs she faces because she has to print out documents in large print, including the speeches she makes in the Commons.

She told activists she had had to “fight” with IPSA over the issue.

She said: “They did actually say, ‘yeah, we know you might have extra costs, but we are not going to meet those costs.’

“That is blatant discrimination and they thought it was OK to treat somebody like that.”

But these are not the only extra costs IPSA has refused to meet.

After de Cordova was appointed as a shadow minister in October 2017, IPSA agreed to fund an extra staff member – after receiving a letter from the parliamentary occupational health service, which supported her request – to provide the support she knew she would need as a disabled person to do her job as both a constituency MP and a shadow minister.

But earlier this year, IPSA told her it had made “an error” and withdrew the funding for the staff member.

As a result of that decision, she has been forced to make the staff member redundant.

She said: “We talk about oppression and that is oppression.

“We are in the process of trying to work out some solutions, but I should not have been oppressed and put through what they put me through.

“They have caused me much worry, anxiety, stress, tears.”

She told the meeting: “Until society and the institutions are going to understand disability, we will not make any progress.”

IPSA refused to answer questions from Disability News Service about the case, because it said they related to de Cordova’s “personal data”.

Among the questions were how it responded to claims that it was guilty of oppression and discrimination, why it changed its mind about paying for a support worker, and whether it accepted that it had discriminated against de Cordova under the Equality Act.

It also refused to say what actions it would take to ensure it did not discriminate against other disabled MPs in the future, and what message its actions sent to other disabled people considering a career in politics.

In its statement, it claimed that it “works closely with MPs and their staff to ensure that funding is provided to support their parliamentary and constituency work, in line with the rules”.

And it claimed that it supports “comprehensive assessments of the specific needs of MPs and their staff, so that any reasonable adjustments, in line with Equality Act legislation, can be identified and quickly funded to help MPs in their jobs.

“IPSA has an uncapped Disability Assistance Fund for costs and reasonable adjustments that are reasonably attributable to a disability of an MP, a member of their staff, a volunteer, a job applicant or constituent visiting the MP’s office or surgery.

“IPSA fully supports a diverse parliament. IPSA is committed to adhering to all equality legislation, and to supporting all MPs fairly.”

26 September 2019


Labour conference: Disabled journalist bids to break new ground in parliament

A disabled Reuters journalist and Labour activist hopes to become what he believes would be the first MP with such a significant level of impairment to be elected to the House of Commons.

Peter Apps, a global affairs commentator with Reuters news agency, is hoping to be selected in – traditionally – one of Labour’s safest seats at the next general election.

He was speaking to Disability News Service at this week’s Labour party conference in Brighton.

Apps is one of up to 18 candidates fighting to be selected as the prospective parliamentary candidate for Vauxhall, in south London, a seat being vacated by Kate Hoey at the next general election.

But if he is selected he would likely have to provide the funding himself for the support he would need while campaigning.

This is because of the government’s refusal to reinstate the Access to Elected Office Fund (AEOF), which was frozen by the government in 2015 after just three years and had provided funding for expenses such as BSL interpreters, assistive technology, personal assistants and taxi fares for disabled people seeking election to parliament.

The EnAble fund, a partial and temporary replacement for AEOF, is only open to those seeking local elected office in England and is not open to would-be MPs.

Apps would be able to pay for his own support because of a legal settlement, but he knows that many others with his significant level of impairment would not be able to do that. It is one of the reasons he is determined to secure a seat in parliament.

Apps is a former war reporter, who became paralysed in 2006 after breaking his neck while covering the civil war in Sri Lanka when he was just 25.

He has regained limited movement in one arm but lacks movement in his hands.

He believes, if selected to fight a seat for Labour, that he would be the candidate with the most significant level of impairment to contest a parliamentary seat for a major political party.

After the accident in 2006, he initially secured a decent support package from Tower Hamlets council, allowing him to live independently.

But this was gradually eroded as a result of spending cuts and he was told by a social worker four years ago that if he had not been able to support himself financially through a significant personal injury settlement he secured from Reuters, he would likely have been placed in a nursing home.

He now funds most of his care package himself, although he does receive financial support through disability living allowance.

His target is to secure the nomination in Vauxhall, where he now lives, but if he is unsuccessful, he hopes to fight another seat, although it would be likely to cost a substantial amount as he would need to stay in a hotel with rooms for two support workers if he fought an election campaign outside London.

He said: “It is costing me a fortune to be down here [in Brighton] for a couple of days but because of the settlement I can do this. Most people can’t.”

He was previously working as a reporter, covering areas such as global defence and emerging markets – during the financial crash – but it was only when he became a columnist that he was able to pursue his wish to become an MP, because of the company’s need to steer clear of accusations of political bias by its reporters.

After serving as a reservist at university, he has now returned to the army, this time as a part-time specialist adviser on media skills and emerging forms of warfare, while also mentoring young soldiers.

He says that being asked to return as a reservist gave him the confidence to pursue his political ambitions.

He is inspired, he says, by Labour’s disabled former home secretary David Blunkett, and by former Labour minister David Lammy.

“If I was elected, I would be representing largely non-disabled people, but I would like to be a good disabled MP, just as David Lammy is a black MP and an incredible role model.

“He and David Blunkett would be two examples of political leaders who are not defined by their characteristics but the fact that they are there makes an enormous difference to a very large number of people.”

But he says the barriers he faces are different to those faced by Blunkett.

He said: “Blind people have been part of society, working, for centuries, but those as physically disabled as me often died, at least until the last 75 years.

“That’s one reason I feel it is important that I do this. When I have thought of dropping out, I remember the reason I am doing it, which is that there is no-one looking like me who has really done this before in Britain.

“It would be an enormous step forward for disabled people but it’s the constituency party’s selection process.

“They don’t want the most disabled MP in history, they want the best person for Vauxhall, and they will make that judgement.”

26 September 2019


Labour conference: McDonnell says autistic activists must ‘eyeball’ shadow ministers

Labour’s shadow chancellor has told disabled party activists they need to “eyeball” senior figures in the party who have not done enough to take on board the policies outlined in their new neurodiversity manifesto.

John McDonnell was speaking to members of Neurodivergent Labour (NDL) at a fringe meeting held to launch the manifesto at the party’s annual conference in Brighton.

McDonnell, who has played a key role in enabling the launch of NDL and supporting the development of its manifesto, said there had not yet been much interest shown by Labour MPs and other frontbench shadow ministers.

He said: “Janine [Booth, convenor of NDL’s manifesto group] and others have been offering briefings to individual shadow frontbench teams, and there wasn’t an awful lot of take-up.”

He said this was because shadow ministers were under pressure and focused on their own briefs.

But he said: “What we have got to do now is make sure, in the run-up to the general election, whenever it comes, that we get reinserted into [Labour’s] national manifesto a recognition of neurodiversity and the challenges and opportunities of that.”

He said: “I think we should use the coming period as an opportunity to lock down commitments within the Labour party for change and then broaden the debate and campaign around it.”

He said he did not blame colleagues in the party for their lack of involvement, because of the pressures they faced.

But he said there was a need now for NDL to “face up and eyeball people” in the party and for the party to “get a move on”.

He added later: “I don’t think we have gone far enough or fast enough, so we have to really renew that and get on with it.”

Booth told the launch meeting: “We think if these policies are enacted as a whole by a Labour government it will radically improve the lives of autistic, dyspraxic, dyslexic and other neurodivergent people in this country.”

She said it was a “living document and the more we build Neurodivergent Labour and the more we bring in allies as well as neurodivergent people, the more we can build this manifesto as different policies develop in new areas as well”.

She introduced the manifesto’s five key principles: that it is based on the social model of disability; that it has a “neurodiversity” approach that accepts that there are “many different brain wirings, many different brain structures” and that “humanity as a species is naturally neurologically diverse”; and that it opposes austerity, including cuts to services such as support for neurodivergent students in mainstream education.

The fourth principle is that it is a “Labour” manifesto, based on Labour values of socialism, solidarity and democracy; and the fifth is that it is based on “nothing about us without us”, so “neurodivergent people ourselves can speak about what our experiences and needs are”.

Abi Moorcock, a member of the manifesto group, described seven key areas where neurodivergent people are facing hostility: securing a diagnosis; independent living, services and social security; education; barriers to work; prejudice and discrimination, including bullying and hate crime; problems with the justice system, including prisoners who should receive support rather than being in custody; and the failure of research into understanding and supporting neurodivergent people.

Emma Dalmayne, a member of the manifesto group and an activist who campaigns to raise concerns about “quack cures” for autism, said in response to a question from a Labour councillor that the proportion of the population diagnosed as neurodivergent has only been increasing because of “more awareness and better diagnostic tools and tool kits”.

She said: “We have always been here, but we were seen as the weird, the kooky, the eccentric, the loner, the oddball.”

Booth added: “There has always been a variety of brain wirings, but the things that have changed socially make those more of an issue.”

Among key polices in the manifesto are to scrap the work capability assessment; to ensure that local authorities carry out the requirements of the Autism Act through decision-making forums that include representatives of autistic people; and to provide the support necessary to enable independent living, including “the need to get more autistic people out of ATUs [assessment and treatment units]”.

The manifesto calls for neurodiversity training for all staff in public services; smaller class sizes, and education about neurodiversity in the school curriculum; and reversing the cuts to special educational needs funding.

It also calls for a new legal requirement on employers to make their workplaces “more equal and accessible and less hostile”; for legal changes to ensure anti-discrimination laws apply to volunteers as well employees; and for measures to ensure the built environment is less distressing.

Other manifesto measures include introducing new laws to ban quack cures, such as MMS (a type of bleach) which harm autistic and other neurodivergent people; to make neurodivergence a new protected characteristic under the Equality Act, with the same protections as disability; and to ensure that “non-harmful unusual behaviours” are not criminalised by the justice system.

McDonnell told the meeting that there was “a hell of a challenge in many fields”, but he added: “I actually think the scale of the challenge is a reflection of the scale of the need.”

He said the issues included in the neurodiversity manifesto should be raised with the party because it was “the right thing to do”.

But he also pointed out that “in pure electoral terms, the number of individuals and families who are dealing with issues of neurodiversity is enormous”, and so a commitment to those policies in Labour’s next general election manifesto would “shift a large number of votes”.

He said: “We need to reinvigorate our representations within the party [and] make sure we get a full recognition within the manifesto itself.

“The resource demands are pretty enormous as well. We have to accept that [but] we might as well confront that early rather than later.

“An amount of investment now does actually in the end, in crude terms, save money at a later date.

“There have been too many cases we have dealt with where issues not tackled have resulted in family breakdown, and people being placed in institutions inappropriately, often very expensively as well.”

Neurodivergent Labour is now set to hold its first agm in London in late November.

Booth said after the meeting that McDonnell was trying to secure an invitation for NDL to discuss its manifesto with the party’s National Policy Forum, as the next stage of persuading Labour to adopt it as party policy.

26 September 2019


Labour conference: Ovation for Justice for Jodey mum

The mother of a disabled woman who took her own life after unfairly having her benefits stopped received a standing ovation at a packed fringe event at Labour’s annual conference, after she pledged to continue her fight for justice.

Joy Dove was speaking after a parliamentary petition in the name of her daughter – Jodey Whiting – secured more than 55,000 signatures by the time it closed this month.

The petition called for an independent inquiry into deaths linked to the actions of the Department for Work and Pensions (DWP), and for evidence of misconduct by ministers and civil servants to be passed to the police for a possible criminal investigation.

Dove told the Real Britain fringe event, hosted by the Daily Mirror and the union Unite, how her daughter had taken her own life just 15 days after her benefits were wrongly stopped for missing a work capability assessment.

DWP’s own Independent Case Examiner (ICE) later ruled that the department was guilty of five “significant” failings in handling her case, after finding that it repeatedly failed to follow its own safeguarding rules.

In an emotional speech, Dove also held up pictures of her daughter, and the grave where she is buried, as well as a copy of her daughter’s post-mortem report.

She said: “What mother needs to see her daughter’s post-mortem report?”

Dove, who had travelled to Brighton from her home in the north-east to speak at the event, told how two senior DWP officials met with her to apologise for the department’s mistakes after the ICE ruling.

She said: “They went in and they found five failings. One failing is human error, but five failings is just unbelievable. They don’t know what they are doing.”

And she described how other families who have suffered as a result of the government’s social security reforms had contacted her through her Facebook campaign page to share their stories.

Party members at the fringe meeting gave Dove a lengthy standing ovation after she told them: “We have got to stop this and get Justice for Jodey and change the system completely.”

Kevin Maguire, the Mirror’s associate editor, who chaired the event, told her: “We know, we could hear, that that was not easy but it’s important that people like you speak up for people like Jodey and others.

“I just wish that David Cameron, when he says austerity didn’t go far enough, when he sits in his £25,000 shepherd’s hut, counting his £800,000 from his memoirs, could hear and understand what he’s doing because austerity has been evil and it has killed people.”

Labour MP Lisa Nandy told the event: “The story that Joy just told will stay with me for the rest of my life, and I hope it will stay with all of you, too.”

She added: “This was what they did to us in 2010. They deliberately picked on people that they thought were too ill, too powerless, too ground down by the system to fight back, so they picked on disabled people and they kicked them off PIP and they denied them the right to the benefits that they needed, thinking that these were the people that were least likely to be able to fight back.”

Unite general secretary Len McCluskey said: “We have a responsibility to make sure that Jodey is not forgotten.”

The Mirror’s Ros Wynne-Jones, who writes its Real Britain column, said Dove had had to take on the government “almost single-handedly” to fight for justice for her daughter.

She said she reminded her of other heroic families who had fought for justice for the victims of the Grenfell Tower fire and the Hillsborough disaster and other working-class families who had had to fight for “truth and justice” after avoidable tragedies under Tory governments.

She said that Jodey and Stephen Smith – who died in April, months after he was found fit for work by DWP despite weighing just six stone – were both victims of the austerity programme, a “hostile environment” that was created by Tory-led governments and which was “a political choice” and not a necessity.

She said: “What astounds me… is that families like Joy’s and communities like the ones I get to see up and down the country are still fighting back.”

The 55,000 signatures secured by the petition fell far short of the 100,000 needed to secure a debate in parliament.

After the fringe event, Dove told Disability News Service that she was still campaigning for ministers and civil servants to face criminal charges in court for the actions that led to Jodey’s death.

She said: “I am 65 years old. Would I think I would be travelling to Brighton to speak at a Labour party conference? No way. We will get justice.”

There has been disappointment and frustration among activists at the failure to secure 100,000 signatures for the petition, which would have triggered a parliamentary debate on the need for an inquiry.

Anita Bellows, a researcher for Disabled People Against Cuts, said: “It has been very upsetting to watch a petition, which should have very easily collected 100,000 signatures, achieve just over half this figure.

“Of course, there are many petitions, but this one was special, in the sense it would have brought some kind of closure to the families of claimants, driven to kill themselves because they lost their benefits, but it would also have exposed the cruel regime under which benefit claimants, some of them disabled, but all facing very adverse circumstances, have to live.

“It would have put the spotlight on the politicians overseeing this regime, and hopefully held them accountable for these avoidable deaths.

“We have been let down by politicians, trade unions/trade unionists, and activists for whom the usefulness of disabled people is to serve their own agenda.”

26 September 2019


Labour conference: Baked Beans demonstrate variety… and impact of austerity

People with learning difficulties have ensured that Labour party members have heard their voices on the impact of austerity on their lives.

Many of those who spoke out at an event on the fringes of this week’s annual conference in Brighton were themselves Labour party members.

They were taking part in one of four events organised by Wimbledon Labour party, as part of an attempt – through its disability officer, Sue Hubbert – to ensure that the voices of people with learning difficulties were heard at this year’s conference.

The events were part of The World Transformed festival, which was taking place alongside the main conference.

One of the events saw actors from the Baked Bean Company, who all have learning difficulties, perform a play – We Want It All! – they wrote themselves about the impact of austerity on the lives of people with learning difficulties in south London.

They raised issues of cuts to benefits and to social care, closure of services, and the discrimination that people with learning difficulties face when trying to exercise their right to vote.

One said, during the play, that “it feels like the more independent I get, the more money they take from me”, and added: “The less I have, the less I am able to do, and the less independent I am able to be.”

After the play, a series of people with learning difficulties spoke from the stage and the audience about their own fights against discrimination and austerity.

Kevin Sutton, a Labour supporter from Brighton, spoke of the barriers he faced in his life, such as in accessing education and transport, and his fears about the impact of Brexit.

He said: “I would like to see more good equality in this country, to help those in need, the homeless, people on benefits, those of us with disabilities and to provide a fair living wage for all.”

Rohan Lowe, a founder member of the Being Heard in Government group run by Brighton SpeakOut, and another Labour party member, spoke of his group’s campaigning work against cuts to council services.

He also described how austerity cuts had affected his work colleagues, meaning they often no longer had time to support him in his role.

And he said the vital software he needs to do his job stopped working several months ago and had yet to be fixed.

He said: “I have spoken to my IT department, my manager and even my union. Still no-one has even looked at it, which makes things difficult and which means most times I feel under-valued.

“I guess my point is that that working with people with learning difficulties might mean giving ongoing support.”

Ian, another SpeakOut member, compared the government’s austerity cuts to the game Jenga, because of how society can collapse when just one piece is taken away, such as cuts to day services, social care and employment.

He said: “The government need to hear what I have to say and get their act together by not cutting day services out, health out or any other brick. They need bricking themselves.”

Joe Jones, from Wimbledon, told the audience that he had been campaigning for the Labour party for the last 41 years, and still canvasses twice a week despite various health conditions.

He said: “I fully intend to continue canvassing until the day I die.”

Another audience member, Toby, said: “It’s very easy to put a label on something… it’s not so simple for people like us, but society likes to do that, they like to put labels on because it’s easier for them to comprehend but that can get in the way of realising all of the potential that all of these unique individuals have.”

He added: “I am autistic, and it’s a fricking gift.”

26 September 2019


Welsh government ignores social care funding crisis… in independent living action plan

The Welsh government has completely ignored the social care funding crisis in a new action plan aimed at ensuring disabled people’s right to independent living.

A public consultation process with disabled people and disability organisations led to “multiple calls” for increased social care funding.

But the final version of the Labour government’s framework and action plan on the right to independent living – which includes 55 actions – says nothing about the funding crisis or the need for more spending on adult social care.

This contrasts with its 2013 framework, which it replaces and which included lengthy sections on access to social care, direct payments and personalised support.

In discussing the engagement process, which took place in 2017, with further engagement late last year on a draft version of the framework, the document says: “We heard that cuts to social care provision have led to lower allocations for Direct Payments which means disabled adults and young people are becoming increasingly isolated and impact to their well-being compromised.”

It also admits that there were “multiple calls for increased funding for health and social care” during that process.

But despite those calls, not one of the 55 actions in the plan mentions social care funding, or the need to address the cuts.

Instead, the action plan details wider measures around independent living, including: barriers to employment; recruitment of disabled apprentices; a review of funding for housing adaptations; collecting evidence on disability poverty; and improving access to health services.

It also includes a planned review of the disabled students’ allowance system; a pledge to improve understanding of the social model of disability across the Welsh government; and action on access to public transport.

There is also a pledge to introduce a scheme in Wales to provide financial support for the extra costs of disabled people seeking election to local councils, to match schemes in Scotland and England.

Nathan Lee Davies, a leading disabled campaigner who has helped secure concessions from the Welsh government on the impact of the closure of the Independent Living Fund (ILF), said the omission was “bemusing” and appeared to be a “major step backwards”.

A spokesperson for the Welsh government refused to comment on the failure to mention cuts to social care funding in the action plan.

But Jane Hutt, the Welsh government’s deputy minister and chief whip, who has responsibility for equality issues, said in announcing the new framework that “supporting people to live their lives in the way they choose is the right thing to do”.

She said the framework sets out how the government was fulfilling its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

But the failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government could be in breach of the convention’s article 19.

Article 19 says that governments signed up to the convention should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

Despite this omission, the framework pledges to “work for continuous improvement in how Wales fulfils its obligations with regard to [UNCRPD] and the Rights of the Child”.

There is also no mention in the document of ILF, and the Welsh government’s decision to close its interim Welsh Independent Living Grant (WILG) scheme, which it had been running as a stopgap with UK government transition funding since ILF closed in June 2015.

WILG closed on 31 March 2018, when the £27 million a year funding provided by the UK government to maintain support to former ILF recipients transferred to local authorities in Wales.

Because of the WILG closure, Welsh local authorities are now solely responsible for meeting the support needs of all former ILF-recipients.

More than 1,200 former ILF recipients will now have their needs met through council funding, while 50 of them have requested an independent assessment of their new support package, a process being funded by the Welsh government following a campaign led by Davies over concerns about post-WILG support.

A Welsh government spokesperson said: “The Welsh Independent Living Grant was introduced as an interim measure to support people who received payments from the UK government’s Independent Living Fund which closed in 2015.

“Our new framework focusses on the future of independent living in Wales, and what Welsh government can do to support disabled people going forward.”

Davies said: “On the face of it the new framework that has been introduced by the Welsh government, following a lengthy consultation process, is as bemusing as it was when [the draft version] was originally launched last year.

“It seems as if I wasted my breath at two consultation days as many of the failings of the framework that I highlighted have failed to be addressed in a [document] that does not seem to address the needs of disabled people with high support needs.

“Social care does not seem to be addressed at all. This is an absolutely bizarre situation when discussing a framework supposedly designed to promote independent living for disabled people.

“Not one of the 55 actions in the action plan mentioned social care funding, which is extremely worrying.”

He added: “After achieving success with the #SaveWILG Campaign – where former ILF recipients have been offered the opportunity of an independent assessment if they disagreed with the decision of the local authority, all funded by the Welsh government – it was hoped that this would signal a change in attitude going forward.

“The dynamic brand of 21st century socialism introduced by first minister Mark Drakeford has delivered positive change that deserves to be recognised.”

But he said the new framework and action plan “seems like a major step backwards”.

He added: “It just seems that the socialist values that the Welsh government demonstrated with their reaction to the WILG campaign have not been utilised in the new framework.

“It does not sit well with me to criticise this new [document], but the fact that it seems to blatantly flaunt the UNCRPD article 19 is a major cause for concern.

“It would be very easy for me to ignore this as WILG recipients have now been protected, but as a disabled activist I remain vigilant to the needs of my disabled brothers and sisters across Wales.

“All disabled people with high support needs should be able to access adequate social care and I will not rest until justice prevails for those in need.”

Rhian Davies, chief executive of Disability Wales (DW), who led the national steering group on the framework, welcomed its publication, particularly “the renewed commitment to implementation of the [UNCRPD] and consideration of options to incorporate this and other UN treaties in Welsh law together with a stronger focus on the social model of disability and proposals to tackle the disability employment gap and support disabled people to take up positions in public life.”

But she added: “Some aspects of the action plan are stronger and more developed than others, often in those areas where disabled people have been closely involved in informing and influencing policy.

“With regard to social care, there appear to be relatively few initiatives cited in the action plan compared with other policy areas.

“Key issues raised during the consultation are omitted, including low take-up of direct payments, provision of advocacy services, WILG developments and the impact of austerity on social care as a whole.

“We understand that the action plan is a work in progress so DW will continue to press for these issues to be addressed, including through Welsh government’s Disability Equality Forum which plays a vital role in monitoring implementation of the framework.”

26 September 2019


Campaign calls for action on discrimination against disabled cyclists

A new user-led campaign is calling on the government to address the discrimination faced by disabled cyclists.

The charity Wheels for Wellbeing is calling for more understanding – among both authorities and the public – of the barriers disabled people encounter when using their cycles.

It says that many disabled cyclists use their vehicle as a mobility aid, but they are often penalised for doing so.

Research last year found that nearly half of disabled cyclists who use their vehicle as a mobility aid have been asked to dismount and walk or wheel their cycle, even when it might be impossible for them to do so.

Some have been threatened with fines or fixed penalty notices.

This often happens on footpaths and in “cyclists dismount” zones, but it can also take place in parks, shopping centres and at train stations.

The charity says this is because cycles are not legally recognised as mobility aids.

The new campaign – My Cycle, My Mobility Aid – is calling on the government to act.

It wants changes to The Use of Invalid Carriages on Highways Regulations 1988 to recognise the use of cycles as a mobility aid.

It also wants a change in the law to allow mobility scooters in cycle lanes, and the creation of Dutch-style “mobility lanes”, which would be open to bicycles, non-standard cycles and mobility scooters.

And it is suggesting a blue badge scheme for disabled cyclists, giving them certain rights and exemptions, as well as a badge that could be used to identify disabled people who use their cycle as a mobility aid.

The charity is also asking for revised guidance on pavement cycling – which currently suggests police officers should use their discretion when considering handing out fixed penalty notices for cycling on the pavement – that makes “explicit reference” to the needs of disabled cyclists.

One disabled cyclist, Phil, from Preston, said: “I use my bike as a sort of rolling walking stick when I walk and I can cycle very long distances without pain. I therefore class my bike as a mobility aid.

“However, it is very difficult to have this recognised in certain situations – for example in parks or other large outdoor venues. All they see is a bike.

“It would be so easy to modify a ‘no bikes’ rule to say ‘unless used as a mobility aid’.”

Another disabled cyclist said: “People tend to express the view that anyone fit enough to pedal a cycle cannot possibly be disabled.

“Disabled people are often considered as only those who are wheelchair-users.

“People are generally ignorant of the concept of a mobility aid – and the more so if it is a bike.”

Wheels for Wellbeing wants disabled cyclists to take part in a new social media campaign, using the hashtag #MyCycleMyMobilityAid, and send in their photographs and stories to raise the profile of the issue.

Isabelle Clement, director of Wheels for Wellbeing, said: “Our research continues to show that most disabled cyclists find cycling easier than walking, and use their cycle as a mobility aid.

“However, we are still finding that many disabled cyclists are being penalised for this.

“This is discriminatory and discourages disabled people from cycling, leading them to instead rely on mobility scooters or cars to get around – neither of which will help the government meet its aims on climate change or physical inactivity.”

A Department for Transport spokesperson said: “While cycling provides the well-known benefits of being a cheaper and sustainable form of transport, bikes can be a lifeline for disabled people who use them as a mobility aid.

“As part of our Inclusive Transport Strategy we will be exploring the feasibility of amending legislation to recognise the use of cycles as a mobility aid.

“By doing so, we are making more locations that are accessible, and helping to increase the number of disabled people cycling.”

26 September 2019


News provided by John Pring at