Contents

Minister admits fatal flaws in universal credit ‘need to be fixed’ and tells DNS: ‘You’ve been onto something very important’ 1

Prime minister suggests all those on sickness benefits should look for work 3

Labour’s DWP fraud bill ‘will be recipe for abuse and miscarriages of justice’ 5

Kendall ignores question on why she shared platform with company linked to DWP deaths 7

Streeting dodges care charges question for four minutes and 25 seconds 10

‘We want a full-time minister for disabled people’, Labour conference meeting is told 12

Disabled MP’s passionate call for action over ‘scandal of locked settings’ 13

Silence again from Labour ministers on accessible housing, despite new announcements 15

Labour accused of treating conference delegate like third-class citizen, after banning her service dog 17

DWP minister dodges question on Kendall’s ‘exclusionary’ decision to sideline disabled people 20

Other disability-related stories covered by mainstream media this week 21

 

 

Minister admits fatal flaws in universal credit ‘need to be fixed’ and tells DNS: ‘You’ve been onto something very important’

The minister for social security has admitted there are serious safety concerns with universal credit, following coroners’ reports that linked the working-age benefits system with the suicides of two disabled claimants.

Sir Stephen Timms is the first minister of any political party to accept the fatal flaws within universal credit and to promise to fix them.

Although he dismissed any possibility that universal credit itself would be scrapped, he told Disability News Service (DNS) that there were “problematic” features of the system and “they need to be fixed”.

He was speaking at Labour’s party conference in Liverpool at a fringe meeting on poverty organised by the Centre for Social Justice, the centre-right thinktank founded by former work and pensions secretary Iain Duncan Smith, which was responsible for the original design of universal credit.

DNS editor John Pring had told the meeting of the increasing concerns about universal credit, including by coroners following two suicides of claimants whose deaths were both linked to flaws in the system and the pressure it puts on people in mental distress.

He said universal credit was now being rolled out to claimants of employment and support allowance.

Pring pointed out that the PCS union had described universal credit in June as a “dangerously flawed system” in which “the most vulnerable continue to slip through its cracks”.

He asked Sir Stephen if he accepted the concerns and what he would do about them.

Pring also highlighted the publication of his book The Department*, about years of deaths linked to the Department for Work and Pensions (DWP), mostly relating to disability benefits, and told him: “I do not want to [have to write a] follow-up in 10 years’ time”.

Sir Stephen said there were problems with universal credit that DNS was “rightly highlighting, and that you have highlighted very consistently over a lengthy period now and have frequently been denied by the department, but they have carried on happening”.

And he added: “I think you’ve been onto something very important.”

But he said he did not believe these deaths and other harm were happening because universal credit was introduced, but because of flaws in the system.

He said: “I do think there are features of universal credit which are problematic, and they need to be fixed, but I don’t think they are inherent problems.

“I think we’ve got to change the system we’ve got to do a better job, and to avoid these problems.”

But he also said he wanted to open DWP up to greater public scrutiny.

Sir Stephen told Pring: “One of the things we need to do is open up what is going on in the Department for Work and Pensions to public scrutiny, and John, you are one of the most prolific applicants for freedom of information requests to the department, and quite right too.

“The department has absurdly refused to answer lots of the questions that you have asked and that is something that we want to change… because public scrutiny is a good thing, and it puts pressure on ministers and on civil servants to have the consequences of what they are doing known about publicly.

“And that’s an area that I’m working on and which the secretary of state may have something to say about in her speech later in the week [Liz Kendall did not mention transparency in her speech yesterday (Wednesday)].

“Yes, we do need to make some very big changes to the way things work, but I don’t believe that scrapping universal credit… would be the answer.”

And he said universal credit had done a “really powerful and good job during the pandemic” when the old system “would have just collapsed” under the weight of new claims.

A Labour delegate, Julie Jarman, asked Sir Stephen whether there should be a “proper independent regulator” and “publicly accessible service standards” for the social security system, playing the role that Ofsted plays in education, so “people in receipt of benefits, as with other public services, can actually hold the service providers to account”.

But he said he was “not convinced” that having a separate regulator outside DWP would “deal with these problems”.

Andy Burnham, the Labour mayor of Greater Manchester, told the meeting that he believed that there needed to be a national “housing first” scheme – as there is in Greater Manchester, and Finland – so that everyone is guaranteed a “good, secure home”.

He said this is based on the idea that “any other public spending is wasted unless you’ve sorted out the housing first” and that such a policy would result in “so much less” spending on “the cost of social failure”.

He also said the government needed to “completely rethink how we support people, and we’ve got to make it positive not punitive”, particularly through devolution of employment support to local authorities.

He said: “If I had my way, I would rename every Jobcentre Plus in Greater Manchester a ‘live well centre’, and rather than spending the employment support budget through large corporate entities, who don’t actually care much for our communities, we would spend that money through our local community and voluntary sector.”

He said the system should be “about helping people move forward and not trying to trip them up and sanction them.

“Shock revelation: that doesn’t get people into work.

“If somebody goes into a Jobcentre Plus in one door and comes out feeling worse 20 minutes later after the consultation, that is not building them up to get back to a position where they can go into work.

“That is doing the opposite, it’s taking people away further from work.”

*The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by John Pring, is published by Pluto Press 

26 September 2024

 

 

Prime minister suggests all those on sickness benefits should look for work

The prime minister has suggested that all claimants of long-term sickness benefits will be expected to look for work under his government’s plans to reform social security.

Sir Keir Starmer made his comments in a BBC interview that was broadcast yesterday (Wednesday), and if they translated into government policy they would demonstrate a significant tightening of the rules on out-of-work disability benefits.

There are currently more than 1.5 million disabled people on universal credit who are not expected to carry out any work-related activity because of a significant impairment or health condition, and about 1.3 million more in the equivalent employment and support allowance support group.

Sir Keir appeared to be suggesting – although it is possible that he misrepresented his party’s policy – that every one of these people should be looking for work.

Labour ministers, including the prime minister, should already be aware that the deaths of countless disabled claimants of out-of-work benefits have been linked to attempts to force them into work or work-related activity over the last 15 years.

Just one example is Alan McArdle.

He died from a fatal heart attack in August 2015 after being told DWP was threatening to sanction his benefits.

The US outsourcing giant Maximus had reported him for failing to attend appointments intended to move him towards work, despite being told about his severe ill-health.

Another example is Roy Curtis, who took his own life six days after being told to attend a WCA, despite DWP being repeatedly warned its actions had made him suicidal.

Sir Keir was responding to a question from the BBC’s Nick Robinson, who asked if he believed that “those who are out of work, who may think that they can’t work, that the country has a right to expect that they look for work, they do everything they can to get work” and that this was “the sacrifice they need to make”.

In response, the prime minister said: “Well, yes, of course. 

“In relation to long-term sickness, which is at very high levels, then of course people need to look for work. But they also need support.”

He also said that the “basic proposition, that you should look for work, is right”.

He added: “There will be hard cases. But the way I would do it is to say, yes, that’s the basic proposition.”

Under the current rules, DWP accepts that many disabled people are not able to work or even carry out work-related activity, and they are provided with extra financial support to recognise the extra barriers they face.

Sir Keir’s comments appear to contrast with those made by his own work and pensions secretary, Liz Kendall, who attempted at conference to stress that she would focus on providing “more positive support in the community” and would take a “completely different approach from the Conservatives”.

She told a fringe meeting earlier in the week (see separate story) that she wanted to change the “culture of fear” among claimants that they could lose their benefits if a job did not work out.

She told the event: “What the Tories did was write people off, blame them to grab an easy headline and then make their lives miserable.

“They talked about shirkers, and it seems to be the only people shirking their responsibility were the Tories.

“If what they did was successful, we wouldn’t have a record number of people out of work due to long-term sickness.”

26 September 2024

 

 

Labour’s DWP fraud bill ‘will be recipe for abuse and miscarriages of justice’

Disabled campaigners have warned that plans to give the government sweeping powers to carry out financial surveillance on benefit claimants are “a recipe for abuse and miscarriages of justice”.

Prime minister Sir Keir Starmer told the Labour conference in Liverpool on Tuesday that his government would “legislate to stop benefit fraud”.

The Department for Work and Pensions (DWP) confirmed the same day that this referred to plans to bring forward a new fraud, error and debt bill that would “crack down on fraud in the social security system”.

It said this would “require banks and financial institutions to share data that may show indications of potential benefit overpayments”.

But it is believed that – as with powers proposed by the last Conservative government – this will mean giving DWP powers to force banks to scan their accounts to find account-holders receiving benefits, as well as people connected with those accounts.

They would then have to report anyone who triggers what are seen as potential indicators of possible fraud to DWP.

Under current rules, DWP can only request details of a bank account holder’s transactions if there are reasonable grounds to suspect them of fraud.

The bill will also give new powers to DWP fraud investigators and – if, again, it follows plans put forward earlier this year by the last Conservative government – could also introduce a new civil penalty for benefit fraud with a “lower burden of proof”.

Labour’s plans on financial surveillance have been heavily criticised this week by disabled people’s organisations.

Rick Burgess, a spokesperson for Greater Manchester Coalition of Disabled People (GMCDP), which campaigned against the last government’s proposals, said the announcement of the new bill was “disappointing” but “not surprising”.

He said: “Labour promised change, but we find ourselves having to fight the same unfair policy that we previously opposed under the Tory government of Rishi Sunak.

“Just because you receive a benefit from the DWP does not mean you should have fewer rights; our financial affairs should not be spied upon by the DWP.

“The DWP should not get greater powers, as this department has already shown it does not exercise its existing powers humanely, transparently, or honestly.

“This is a recipe for more abuse and potential miscarriages of justice that would make the Post Office Horizon scandal look tiny in comparison.”

Mikey Erhardt, policy and campaigns officer for Disability Rights UK, said the bill would subject millions of claimants to “untested, unscrutinised, and potentially unlimited powers”.

He said: “The government’s latest plans are essentially a digital sledgehammer to crack the tiniest nut.

“These new powers would see millions deprived of the presumption of innocence, adding to the criminalisation we already face in a punitive welfare system that often seeks to sanction people into work, whether we are able to or not.”

He added: “This speech could have been a moment to announce a social security system built on respect, dignity, and support that enables us to live the lives we deserve – not spending millions to create an uncontrollable digital panopticon.”

A spokesperson for National Survivor User Network (NSUN) said: “Many people – particularly those who are racialised – live with trauma related to surveillance.

“This will only be exacerbated by the knowledge that the DWP may soon be able to access banking records without account holders’ knowledge.

“Money management is also a source of great distress for many, and an area in which people who experience mental ill-health are often infantilised through lack of control over their own finances.

“The threat of financial surveillance would be yet another obstacle to contend with.”

And Caroline Collier, from Inclusion Barnet’s Campaign for Disability Justice, said the announcement was “very concerning” and that the plans were “both intrusive and unnecessary” and would have a “disproportionately large effect on disabled people”.

She said: “It is inevitable that automated surveillance will throw up erroneous overpayment or fraud alerts, causing possibly lengthy benefit suspension while things are sorted out, with all the associated hardship, debt and stress that entails. 

“It also disregards people’s basic right to privacy, which should be respected unless there are reasonable grounds to think that an offence has been committed. 

“This is a miss-step, and I very much hope government will reconsider.” 

A DWP press release about the new bill insisted that it would include safeguarding measures to “protect vulnerable customers”, that DWP staff would be “trained to the highest standards on the appropriate use of any new powers”, while there would be “oversight and reporting mechanisms, to monitor these new powers”. 

It added: “DWP will not have access to people’s bank accounts and will not share their personal information with third parties.” 

The new bill is likely to be based on two sets of proposals put forward by the last Conservative government.

The first is the data protection and digital information bill, which the last government failed to get through parliament before July’s election, and which was hugely controversial.

It is also likely to be based on a DWP policy paper released in May – Fighting Fraud in the Welfare System: Going Further – which led to DWP facing questions over why it ignored concerns raised by a coroner about a disabled woman who died following a “targeted” review of her universal credit claim.

26 September 2024

 

 

Kendall ignores question on why she shared platform with company linked to DWP deaths

Work and pensions secretary Liz Kendall has ignored a question on why she shared a platform at her party’s annual conference with an outsourcing giant linked to the deaths of disabled benefit claimants.

Kendall was speaking at the fringe event on “the future for work”, hosted by the discredited US multinational Maximus and the centre-left thinktank, the Fabian Society.

Maximus has been closely linked to the deaths of claimants over the last 10 years, including those of Jodey Whiting, Alan McArdle, Philip Pakree and Roy Curtis*.

Towards the end of Monday’s fringe event, Disability News Service (DNS) asked Kendall whether – in the light of such deaths – Maximus was the right company to be telling the government and Labour party members about the future of work.

But instead of asking Kendall to respond, Andrew Harrop, general secretary of the Fabians, who was chairing the event, said he would ask Maximus UK president Dr Paul Williams to “very quickly respond” instead.

After Williams had spoken, Kendall was asked by Harrop for her “closing comments”.

She did not answer the Maximus question, even though DNS had made it clear it was directed at her.

In his response, Williams had said: “I’m not sure that I recognise that characterisation.”

He insisted that Maximus were “credible partners” because of their work supporting “people with disabilities” through Remploy.

He said Maximus had carried out assessments for about 10 million people in the last decade and took “tremendous pride in the way we seek to personalise those assessments, make them detailed and thorough where needed and try to support people through the process”.

He said: “I think we have actually got a wonderful track record for that, and I am very proud of my team.”

After the event, Harrop insisted that – despite his asking Maximus to comment on the question and then not asking Kendall to answer it – she had had “the opportunity to do so”.

There have been many concerns raised about Maximus since it took over delivering work capability assessments (WCAs) from Atos in 2015, in addition to its links to a number of deaths.

In August 2015, Alan McArdle died from a fatal heart attack after being told DWP was threatening to sanction his benefits.

Maximus had reported him for failing to attend appointments intended to move him towards work, as part of the government’s Work Programme, despite being told about his severe ill-health.

Maximus also failed to act on a request from Jodey Whiting for her WCA to be carried out at home, even though it knew of her history of significant mental distress; she later took her own life after her benefits were stopped when she missed her assessment.

A third death linked to Maximus was that of Philip Pakree, who died on Boxing Day 2020.

Maximus had been warned of his serious health conditions but told him he would have to be assessed or it would affect his benefits, telling his partner: “It’s been delayed once, we are not delaying it again.”

He died in his sleep after becoming nearly hysterical with distress.

Comments about Maximus were also scrawled in red ink on official letters found after the suicide of Roy Curtis in late 2018.

A folder of letters found in Curtis’s flat after his body was discovered in August 2019 showed he had written desperate messages about his disability benefits “nightmare”.

In 2016, Labour MP Louise Haigh – now the transport secretary – attacked the track record, ethics and even criminal behaviour of Maximus in delivering public contracts in the US, during a debate on the WCA.

Haigh also highlighted what she described as a “disconcerting pattern of behaviour” by Maximus in the UK since taking over the WCA contract from Atos the previous year, with “an alarming trend of cases being rejected based on factual errors or even – I hesitate to say this – falsification”.

From this month, Maximus has become one of four outsourcing companies that will carry out both WCAs and personal independence payment assessments across the country, after DWP awarded the quartet £2.8 billion-worth of contracts under the last government.

Kendall did not provide any fresh insights this week into how Labour intends to reform employment support.

Two months ago, she announced that she wanted her department to move from being “a department for welfare” to becoming “a genuine department for work”.

She made those comments while helping to launch a report that focused strongly on the need to push more people with long-term health conditions into work and which included a controversial recommendation for DWP to introduce a “duty to engage” with employment support.

Labour will publish an employment white paper this autumn, and it is set to reveal its plans for disability benefits next spring.

Kendall told Monday’s fringe meeting that she believed that “there is clear evidence that good work is good for mental health”.

She said the government needed to “turn the tide on the fact that we are a sicker nation, which we are”, and that “work, health, skills are all joined up and I think that has absolutely got to be done at the local level”.

She said the last government “reduced welfare reform to a story about cuts to benefits and what the tapers are”, and she added: “We have got a completely different approach from the Conservatives.

“Just as in the NHS, you end up spending too much on the consequences of failure, failure to intervene early or the failure to provide more positive support in the community, the same as is happening in DWP.

“We are paying the price for not having put in place better systems of support for people.”

She also spoke of the “culture of fear” of losing benefits if a job does not work out.

She added: “I am under no illusions about how hard it could be to change the culture.

“What the Tories did was write people off, blame them to grab an easy headline and then make their lives miserable.

“They talked about shirkers and it seems to be the only people shirking their responsibility were the Tories.

“If what they did was successful, we wouldn’t have a record number of people out of work due to long-term sickness.”

*The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by DNS editor John Pring, is published by Pluto Press 

26 September 2024

 

 

Streeting dodges care charges question for four minutes and 25 seconds

Health and social care secretary Wes Streeting has refused to say when the new Labour government will address the care charging crisis that is leading disabled people to face unlawful discrimination and inequality on an “unparalleled” scale.

Despite being asked several times by Disability News Service (DNS) when the government would act to scrap care charges for disabled people, he gave no timeframe for when or if that might happen.

Instead, he referred twice to the “£22 billion black hole in the public finances” and said it would “take time to deal with the mess we have inherited from the Conservatives”.

Speaking after a fringe meeting at the Labour party conference in Liverpool, Streeting said: “Give us time, we’re two months in… I recognise the challenge on charging, but it does come down to money, too.”

But despite repeated questions from DNS over more than four minutes, as he and his aides walked along Royal Albert Dock to his next meeting, he failed to say when a Labour government might act on care charges.

Asked about the tens of thousands of disabled people falling into debt every year because of care charges, he said: “I absolutely recognise the challenge, but it is going to take time to deal with the mess we have inherited from the Conservatives; part of that has got to be rebuilding our economy so we can invest in our public services, and charging reform itself.”

The interview started just yards from where Streeting promised DNS two years ago – when asked what a Labour government would promise on care charges during its first term in government – that Labour was “working on it”.

But Streeting was unable on Sunday to point to any progress since he made that pledge two years ago.

He said: “We recognise the challenge and we’re determined to meet the needs of both disabled people and older people in social care.

“I wish I could promise an overnight fix, I wish this was an issue I could fix in the first eight weeks of a Labour government, but it is going to take time, and I am asking people to bear with us.”

His comments came two months after Disability Law Service (DLS) published research which found that disabled people across England were continuing to face unlawful discrimination and inequality on an “unparalleled” scale because of “unjust” social care charging policies.

DLS suggested that the proportion of disabled adults being charged for their non-residential care was increasing year by year and that local authorities were incurring “significant” and increasing costs of collecting these charges, with most of those charged paying “extortionate amounts” to local authorities.

Research by disabled campaigners showed in 2022 that tens of thousands of disabled people across the country every year were having debt collection action taken against them by their local authorities over unpaid care charges.

Streeting had earlier told the Future Social Care Coalition fringe event that the government would need to recognise “as we think about the NHS crisis that so many of the challenges and pressures driving that NHS crisis are because of the crisis in social care.

“There is no fixing the crisis in the NHS unless we address the crisis in social care.”

But he said social care was important “in and of itself, not just as a means of NHS improvement, it’s important today when there is so much unmet need”.

He said: “We owe it to disabled people to make sure that you get the care and the support you need to enable you to fully participate in every aspect of life, and to feel the same sense of security and the same opportunities and quality of life as everyone else.”

And he stressed that when he talked about social care he was thinking about older people and disabled people.

He told the meeting that both reform and investment would be needed to “deliver results”.

Streeting said that Labour, the Conservatives, the Liberal Democrats and the SNP had all been in government over the last 20 years and none of them had delivered the long-term “change” and “solutions” that the country was “desperately crying out for”.

He said: “There is a quiet determination at the centre of our team in the Department of Health and Social Care – and more broadly the government – to make sure that we get this right… for the benefit of people who need care, their families and the care workforce.

“I actually feel really optimistic and hopeful that this will be the parliament that really grips social care, that deals with the crisis confronting us now and also signs up to the longer-term reform agenda we need.”

He said the “low hanging-fruit” was building a national standards framework and “holding care providers to account”, stabilising the workforce, “sorting out the Care Quality Commission”, and setting out a 10-year plan for social care.

The care minister, Stephen Kinnock, had earlier said that the government was “drawing a line under the kicking the can down the road” plan of the previous government.

He said the government was working on a fair pay agreement for care workers and would be “setting the ball rolling on that” within weeks.

He said the government knew that the system needed “huge reform and improvement” but that the changes needed to be “sustainable”, and he pledged that the government would be “listening to people with lived experience” and care workers and providers.

He said: “I share your frustration that we can’t move more quickly but I guarantee that we are absolutely putting this at the heart of the government’s priorities going into the coming weeks, months and years.”

26 September 2024

 

 

‘We want a full-time minister for disabled people’, Labour conference meeting is told

Disabled campaigners say they want more than a “part-time minister” for disabled people under the new Labour government.

A fringe meeting at Labour’s annual party conference in Liverpool heard of concerns that Sir Stephen Timms had too many responsibilities as the minister for social security and disability.

Activists pointed to how Labour had worked in opposition, with a dedicated shadow minister for disabled people, Vicky Foxcroft.

But after Labour won power in July, Foxcroft was appointed to a role in the government whips office, and Sir Stephen was given the new role of minister for social security and disability in the Department for Work and Pensions (DWP).

The concerns about the lack of a dedicated disability minister were highlighted by Lady Lola Oyewusi, who sits on UNISON’s national disabled members’ committee.

She told the meeting, hosted by Disability Labour: “When we were in opposition, we had a shadow minister for disability.

“Now we are in government, we haven’t got a minister for disability, it has been lumped together with the DWP.

“It can’t be lumped together. We know exactly how the Tories persecuted people with disabilities, labelling them… lazy, not wanting to work, wanting to turn PIP* into vouchers, demonising people when you’re applying for PIP.

“We need a minister who will speak up for disabled people.

“Please, help us get a minister for disabled people.”

Kathy Bole, Disability Labour’s chair, said: “We have told the government that we are not happy about the fact that there is no single minister for disability.”

She said the appointment of a minister for social security and disability was a “step backwards” and added: “It is absolutely going to be something that we are raising again and again and again.

“We don’t deserve a part-time minister. We deserve a full-time, fully engaged minister and we won’t stop until we get one.”

After the event, Bole told Disability News Service that the government should correct the “retrograde step”.

“There’s so much that needs to be done on social security. [Sir Stephen] has enough on his hands.

“We need a dedicated minister because he could then concentrate on social security and we could get somebody who was concerned with all of the stuff that’s going on for disabled people [across government].

“Social security needs to be dealt with, but it’s such a big thing on its own.

“I’m getting sick and tired of disabled people ending up at the bottom rung with just crumbs left behind.

“We need a minister for disabled people.”

*Personal independence payment

26 September 2024

 

 

Disabled MP’s passionate call for action over ‘scandal of locked settings’

A disabled Labour MP has delivered a passionate call for action over the number of autistic people and people with learning difficulties who are “imprisoned” in inpatient mental health units.

Jen Craft told a fringe meeting at Labour’s annual party conference in Liverpool that the detention of people in such units for long periods of time in “completely unsuitable” environments was a “national scandal”.

The meeting was held to discuss the detention of autistic people and people with learning difficulties in locked NHS settings.

A report in May found there were still 2,045 such people detained in mental health hospitals at the end of March 2024, just a 30 per cent reduction in nine years. 

Craft, who was elected as MP for Thurrock for the first time in July, told the meeting that there was a “real urgency” about the need to “end the scandal of people in locked settings”.

She said: “I think for people that are experiencing this right now, change can’t come soon enough.”

She also pointed to the ongoing impact on a disabled person after they have left a locked unit, because of the damaged trust in services felt by them and their family after such an “incarceration”, which means it is “almost impossible” to recover from such “wrongful imprisonment”.

She said: “How can you, if you’re an individual that has experienced that, how can you trust someone that’s coming in and saying, ‘These are the things you need to do, this is how I’m going to help you’?”

She and others attending the meeting had watched a video of an autistic woman, Bethany, whose past detention in a locked unit has previously been highlighted in the media.

Her dad, Jeremy, says in the video that the family were told that the unit his daughter was going to be placed in would be “therapeutic” and that she would have the chance to take part in “animal therapy, music therapy, drama therapy”.

Instead, she was “tormented” by her surroundings and deliberately behaved in a way that meant she was placed in seclusion.

He said: “The periods of seclusion went from half an hour to an hour to half a day to a day, and eventually they stopped opening the door.”

The room was just 12 feet by 18 feet and had nothing but a mattress on the floor.

Jeremy said the “brutal” conditions led to a “spiral of descent into distress” for his daughter.

He said: “The impact of that is a person is left in a setting that’s distressing them, and it makes them even more ill, so they get more medication.

“Their opportunity to engage in therapy isn’t there, but also, their state of mind doesn’t enable them to engage.”

Craft was visibly distressed by what she saw and heard on the video, and she said she had been “deeply impacted” by the “incredibly powerful” video.

She said she had a disabled child herself and it filled her with “absolute dread” when she heard such stories of parents who have unwittingly sent their child to “a kind of hell” when they thought they were making the best decision for them.

Sir Stephen Timms, minister for social security and disability, said the government’s mental health bill – which is likely to be based on the draft legislation brought forward by the previous Conservative government – would provide “greater choice, autonomy, better rights, and support”.

He said: “We intend to shift the power toward the patient, I think.

“That’s been part of the problem up until now, and it will explicitly limit the scope for detaining people with a learning disability, and with autism.”

He added: “We’ve said that people in the future will only be detained where it’s strictly necessary and where there’s a reasonable prospect of therapeutic benefit from compulsory hospital treatment.”

He read out a briefing from the Department of Health and Social Care, which stated that its proposed reforms to the Mental Health Act would “help ensure people get the support they need in the community, improving care, keeping people out of hospitals.

“The number of people with a learning disability and autistic people in mental health hospitals is unacceptable.

“There are still too many people being inappropriately detained.”

The fringe meeting was hosted by the Voluntary Organisations Disability Group (VODG), whose members are mostly non-disabled-led charities that provide services to disabled people.

Dr Rhidian Hughes, VODG’s chief executive, told the meeting: “The system has been seemingly incapable of making any change at any scale or any meaningful pace.

“And thinking about Beth’s story there, I think it would be hard to imagine any other circumstances in this country where we would tolerate a British citizen being detained indefinitely by the state without trial and where the government has explicitly acknowledged that the conditions for their detention are, for the majority, inappropriate and should be ended.”

Disability News Service had intended to ask what efforts VODG and its members would take to ensure that disabled people’s organisations were right at the centre of campaigning on this issue, but was not chosen to ask a question by the meeting’s chair.

26 September 2024

 

 

Silence again from Labour ministers on accessible housing, despite new announcements

Labour ministers have again failed to make any commitment to toughening standards on accessible homes, despite announcing a string of new housing measures at their annual party conference.

Deputy prime minister Angela Rayner, who is also the housing secretary, told the conference of plans to build “decent homes for working people”, and she said a new planning framework would “provide the biggest boost to social and affordable housing in a generation”.

Rayner is leading on delivering the government’s pledge to build 1.5 million new homes over the next five years.

She also told the conference that Labour’s renters’ rights bill would “rebalance the relationship between tenant and landlord and end no fault evictions”, while it will also “clamp down on damp and mouldy homes by bringing in Awaab’s Law in the social rented sector”.

And the government will consult this autumn on a new “Decent Homes Standard” for the social rented and private rented sectors.

Rayner also said that a new national planning policy framework this autumn would “unlock the door to affordable homes and provide the biggest boost to social and affordable housing in a generation”.

But there was no mention in her speech of the accessible housing crisis.

The prime minister, Sir Keir Starmer, also spoke on Sunday of new “planning passports” that he said would “turbocharge housebuilding in urban areas after 14 years of stagnation and blockage” and “accelerate urban densification by setting high standards for design and quality”.

But he also omitted any mention of the need to build more accessible homes.

After Disability News Service questioned the party on the failure of ministers to mention the accessible housing crisis, a Labour spokesperson said: “Accessibility in new homes and accessibility standards for buildings in general are a key concern for many people.

“Housing is one of this government’s top priorities and everyone deserves to live in a decent home in which they feel safe.

“The government will set out its policies on accessible new build housing shortly.”

In July, Inclusion London led a protest about the accessible housing crisis outside the gates of Downing Street.

The protest was timed to coincide with the second anniversary of a pledge by the last (Conservative) government – which was never fulfilled – to take action to address the shortage of accessible homes.

Chants at the protest were aimed at Rayner and the new prime minister.

A day after the protest, Rayner delivered a speech to MPs about the government’s plan to “get Britain building” and “breathe life back into towns and cities” without once mentioning disabled people and the accessible housing crisis.

Now, at this week’s conference in Liverpool, she repeated that omission during her speech, which received a standing ovation from party delegates.

Inclusion London said in July that an estimated 400,000 wheelchair-users were living in unsuitable homes, while more than 100,000 disabled people were on council waiting-lists for accessible and adaptable homes.

Protesters later delivered a letter to Number 10, calling on the prime minister to take “immediate and decisive action”.

The letter called on the government to strengthen guidance so all new homes will have to be built to the stricter M4(2) “accessible and adaptable” standard, and a minimum of 10 per cent of new homes meet the M4(3) standard, which means they would be suitable for a wheelchair-user.

It is now more than two years since the last government announced it would strengthen these standards, and nearly four years since the policy was first consulted on.

26 September 2024

 

 

Labour accused of treating conference delegate like third-class citizen, after banning her service dog

Labour has been accused of treating one of its own disabled delegates like a “third-class citizen”, after refusing to allow her to enter its party conference with her assistance dog.

It is the latest example of years of disability discrimination by Labour, which has frequently left the party on the verge of being sued by its own disabled members under the Equality Act.

Disabled campaigner Anna Morell later raised her concerns from the main stage of the conference in Liverpool.

Morell, who has an energy-limiting impairment, had made her access requirements known to the party weeks before the conference began.

But when she arrived in Liverpool on the eve of the conference, she was asked in a call from a regional party officer if her dog, Rex, was trained and registered.

She replied that he was trained but that there was no such register.

She arrived at the conference with Rex the next day (Saturday), but staff prevented them entering the conference, even though she explained that he played a key health and safety role for her.

After 90 minutes lying on the floor of the security tent at the entrance, because staff could not find an accessible chair – leaving her “shaking with exhaustion and stress and cold” – she was taken to a nearby room.

She was then told that Labour’s conference policy did not allow service dogs entry without accreditation, registration, or formal training, and that only dogs registered with charities such as Guide Dogs and Canine Partners were allowed in.

Morell was offered a taxi back to her accommodation or her Kent constituency to ease her “distress”.

She was forced to return to the accommodation, where a neighbour offered to look after Rex for a few hours.

She returned to the conference that afternoon to challenge the decision, with support from Ellen Morrison, who represents Labour’s disabled members on its national executive committee (NEC).

They were told it would not be fair to reconsider the decision as other disabled people had been refused permission to bring their “unaccredited” dogs to conference.

This appears to be a clear breach of the Equality Act.

The Equality and Human Rights Commission has made it clear in guidance – updated this month – that there is no legal requirement for an assistance dog to be trained, that assistance dogs “can also be trained by their owners”, and that the law “does not require the dog to wear a harness or jacket to identify it as an assistance dog”.

Labour managers told Morell that other delegates with self-trained assistance dogs had been told they would not be allowed to attend conference “due to the impact on other attendees”.

The row meant she missed the whole of the Labour women’s conference on Saturday, at which she was supposed to be a delegate.

The next day, Sunday, she was told in an email from the secretary to Labour’s conference arrangements committee (CAC) that, after “careful consideration, and with consultation with the venue, the decision remains that you will not be able to bring your dog into the Conference site”.

The email added: “The Labour Party is committed to providing a fully accessible Annual Conference.”

Morell said the failure to accept her access needs had severely impacted her pain and energy levels, because Rex helped her manage her impairments.

It also meant she had to pay for dog-sitting for Rex.

She told Disability News Service (DNS): “They have not been able to produce the documentation that this policy is apparently based on.

“They have come up with an arbitrary rule.

“They don’t trust disabled people. That’s the vibe I get.

“I thought this was a party of equity and equality, and I can’t get through the door. I am gobsmacked and deeply exasperated.”

When she asked a question on Tuesday morning in the main conference hall (watch from five minutes), she listed a series of access failures.

They included the party’s refusal to allow “non-registered” service dogs to enter the event, but also lifts breaking down – she had spent nearly an hour stuck in a lift with two other disabled people the previous day – failures in delivering alternative format documents, an “almost complete lack of meaningful signage around and between the venues”, and inaccessible doors and toilets.

Morell also asked why the party had not engaged with access professionals and disabled leaders within the party on how to “transform access at conference so it is accessible to all of us”.

She said disabled people “need a place at conference where our voices can be represented”.

Lynne Morris, the CAC chair, said in reply: “We work hard to ensure conference is as accessible as possible for all delegates.”

She said a CAC member was “working closely with our accessibility stewards and… Disability Labour to find a solution to any issues”, and she invited Morell to a meeting later that day to “get a full picture of what the problems are so that we can try and resolve them, if not this year, then certainly for next year”.

Ellen Morrison told DNS that disabled members were facing issues with accessibility at the Labour conference every year, with some resolved in time for the following year’s conference.

But she said she had been “disappointed” that there was a disabled member and delegate who had “faced such significant issues with being able to engage with and participate in our conference”.

Morrison said she was still “unclear” as to why Morell had been denied permission to bring Rex into the conference, and that her experience highlighted the party’s lack of a policy on assistance dogs, and the lack of training for staff and role-holders on disability and access.

She added: “I will be taking these issues up with [Labour’s] general secretary, and trust they will be addressed for future years.

“I have already raised these points with the NEC at a meeting here in Liverpool, to get the assurances this will come back as points for the whole NEC to consider.”

Kathy Bole, chair of Disability Labour, which is affiliated to the party, said she believed the party had discriminated against Anna Morell, and had treated one of their own disabled delegates “like a third-class citizen”.

She said the party appeared to believe that those disabled people with more complex access needs were not welcome at conference.

Bole said she believed the party “seemed to be going backwards” on dealing with discrimination against its disabled members.

She added: “They clearly don’t have any real idea of what the Equality Act says and their duties.”

Morell told DNS: “Until Labour gets its head around the social model of disability and applying equality law fully, accurately and meaningfully, it is going to continue to discriminate against its disabled members.”

Labour had not responded by noon today (Thursday) to a request to comment on the refusal to allow Morell’s service dog into the event.

It is the latest in years of incidents of discrimination by Labour, which has frequently seen disabled members on the brink of taking legal action against their own party.

Last year, a wheelchair-user could easily have lost his life in front of hundreds of delegates at the same venue, after the party ignored years of safety warnings about the ramp used to access the speakers’ platform.

And less than two years ago, Labour was warned that it faced possible legal action over years of disability discrimination, after reneging on plans to hold a national disability conference and set up a committee of disabled members.

26 September 2024

 

 

DWP minister dodges question on Kendall’s ‘exclusionary’ decision to sideline disabled people

A minister has failed to explain why his boss set up a board of experts to examine “economic inactivity” without appointing a single representative of a disabled people’s organisation (DPO).

Sir Stephen Timms was asked about the decision of his boss, Liz Kendall, not to include any experts with lived experience of disability on her new Labour Market Advisory Board.

Kendall has made it clear that the key aim of the board is tackling the “spiralling inactivity” caused by a record number of people out of work due to long-term sickness.

But when asked on Monday about its membership, Sir Stephen failed to explain why there were no DPOs represented on the board, or apparently any disabled board members at all.

Disability News Service (DNS) told Sir Stephen that Labour had “repeatedly promised over the years that it would co-produce policy with disabled people and yet Liz Kendall failed to appoint any DPOs or experts with declared lived experience” to the new board.

DNS added: “It has been described as exclusionary. What has happened to that promise Labour made?”

Sir Stephen said Labour had made a “manifesto commitment to put the views and voices of disabled people at the heart of everything we do… and it is my job as the minister for disability, with a cross-government responsibility, not just responsibility in the DWP, to deliver on that commitment”.

He said he had had a number of engagements with “disabled people’s organisations”, and mentioned a meeting with Scope – which DNS pointed out was a disability charity and not a DPO – and planned to meet with the Voluntary Organisations Disability Group, whose members are nearly all service-providers and disability charities.

But he failed to address the issue of the membership of Kendall’s Labour Market Advisory Board.

Last week, disabled researcher Stef Benstead, author of Second Class Citizens, said it “should not be thinkable for any modern government department to have an advisory board that does not include representatives of the community impacted by the policy proposals”.

Catherine Hale, consultant researcher at King’s College London and founder of Chronic Illness Inclusion, described Kendall’s decision as “frustrating”, and Julia Modern, from Inclusion London, said that without disabled people’s input, the new board would be “as ineffective as it is exclusionary”.

26 September 2024

 

 

Other disability-related stories covered by mainstream media this week

Unions have won a non-binding vote at the Labour party conference calling on the government to reverse its cuts to winter fuel payments. In an impassioned speech to Labour activists, Unite general secretary Sharon Graham said she “did not understand” how the new Labour government could target pensioners while leaving “the super-rich untouched”. “This is not what people voted for. It’s the wrong decision and it needs to be reversed,” she told the hall: https://www.bbc.co.uk/news/articles/cdd4ejq32pdo

The parents of a student with chronic anxiety who killed herself ahead of a university presentation have welcomed new guidance for disabled students. University of Bristol student Natasha Abrahart was found dead in her flat in April 2018. The Equality and Human Rights Commission has published new guidance – contributed to by Ms Abrahart’s family – setting out what universities must do to comply with the Equality Act: https://www.bbc.co.uk/news/articles/cj31xj1enllo

A “devoted” mum and her “severely disabled” eight-year-old daughter found dead in a house in Salford in a suspected murder-suicide have been named by police. 40-year-old Martina and daughter Eleni were discovered at a home on South Radford Street on Monday, after emergency services were called over concerns for their welfare: https://www.mirror.co.uk/news/uk-news/breaking-mum-severely-disabled-daughter-33737057

26 September 2024

 

News provided by John Pring at www.disabilitynewsservice.com

 

Contents

Hundreds of thousands face ‘starve or freeze’ decision after winter fuel payments cut, say disabled activists 1

Lib Dem conference: Government ‘should consider criminalising disability discrimination’, says disabled MP 3

Labour makes ‘unthinkable’ and ‘exclusionary’ decision to sideline disabled people from DWP ‘inactivity’ board 4

Co-production ‘will not be possible without funding from government’ 7

Lib Dem conference: Party pushes for assisted suicide despite concerns over lack of ‘watertight’ safeguards 9

Lib Dem conference: Party ‘must campaign to save social care and NHS like our lives depend on it’ 12

Discrimination court win over UK’s ‘worst’ station for assistance ‘shows need for reform and culture change’ 14

Lib Dem conference: Rising star calls on their party to ‘walk the walk’ on disability 16

Other disability-related stories covered by mainstream media this week 18

 

 

Hundreds of thousands face ‘starve or freeze’ decision after winter fuel payments cut, say disabled activists

Disabled activists say Labour’s plans to means-test winter fuel payments will leave many current recipients having to decide “whether to starve or freeze”, after the government admitted that 1.6 million disabled people were likely to lose their entitlement.

Government figures showed that its plans to means-test the payment would disproportionately affect disabled people.

Although two brief assessments of the impact of the changes on disabled people and other groups were released on Friday, the government has refused to carry out a broader impact assessment of the policy because it said it could see no “significant” impact on the private, public or voluntary sectors.

The Disability Poverty Campaign Group (DPCG), which is led by Disability Rights UK and Inclusion London, said this conclusion was “thoroughly inadequate”, and it called for the cuts to be reversed, and for a full national equality impact assessment of all recent social security cuts and reforms.

It said this would “expose the cumulative impact of repeated cuts on disabled people” and other groups protected under the Equality Act.

DWP released the equality impact assessment of the policy on Friday in response to a freedom of information request.

It concluded that about 71 per cent (1.6 million) of disabled people who currently receive the annual payment would now lose that entitlement.

In a response to a separate freedom of information request, the Treasury released its own equality impact assessment, which it said was “part of advice provided to the Chancellor of the Exchequer ahead of her decision to target the Winter Fuel Payment”.

It concluded that the measure would “disproportionally negatively” affect disabled people, as pensioners “are more likely to have a disability than the rest of the population (54 per cent vs 13 per cent)”.

Disabled People Against Cuts (DPAC) yesterday (Wednesday) pointed to the expenses claimed by two ministers at the heart of the decision, chancellor Rachel Reeves and work and pensions secretary Liz Kendall.

The expenses claimed by Reeves from the Independent Parliamentary Standards Authority for energy costs at her second home reached nearly £1,500 in 2023-24.

Kendall claimed even more, with official figures showing she claimed £3,104 for energy costs at her second home in 2023-24, more than 10 times the annual winter fuel payment for those over 80.

The payment is currently a “universal” benefit, paid every November or December to everyone over the state pension age, with £200 paid to people aged between 66 and 79 and £300 to those aged 80 and over.

But Reeves announced in July that the government would restrict the payment to those receiving pension credit, and some other income-related benefits available to older people.

Earlier this month, the Department for Work and Pensions (DWP) launched a campaign to encourage take-up of pension credit, with up to 880,000 pensioners currently not claiming the benefit – worth an average £3,900 per year – despite being entitled to it.

About 780,000 of these older people are expected to be eligible for pension credit but to continue not to claim it, and will therefore also miss out on winter fuel payment.

Bob Ellard, a member of DPAC’s national steering group, said: “Removing the winter fuel payment from older people who are currently just about able to cope, will push them into the trap of deciding whether to starve or freeze.

“As has been widely commented, many people who are eligible for pension credit, don’t claim, not least because of the length and complexity of the forms needed to apply.

“This is Labour punching down to people who can’t fight back; it will end up with people dying in destitution.

“It’s disgusting, revolting, and Starmer, Reeves and all of Labour ought to be ashamed.”

DPCG said yesterday that it was “extremely concerned that such a major change to policy was pushed through so quickly, without adequate scrutiny”.

It said the changes would be “extremely regressive” because people experiencing digital exclusion and loneliness were likely to find it particularly hard to apply for pension credit in time to receive the winter fuel payment, as would older people with learning difficulties or mental distress.

DPCG said the policy would lead to increased winter deaths among older people, more hospitalisations, and probably an increase in non-payment of fuel bills and demand for food and energy banks.

19 September 2024

 

 

Lib Dem conference: Government ‘should consider criminalising disability discrimination’, says disabled MP

One of parliament’s new disabled MPs has suggested that the government should consider criminalising disability discrimination, because of the difficulty disabled people face in enforcing the Equality Act.

Liberal Democrat Steve Darling was speaking to Disability News Service (DNS) at his party’s annual conference in Brighton this week.

As a guide dog-user, with a wife who also has a guide dog, he has experienced repeated discrimination when trying to access services such as hotels, restaurants and taxis, including when trying to hire a taxi in Brighton on the way to the conference.

Although he said the Equality Act was “great in principle”, he said it relies on disabled people taking legal action themselves to enforce it – as he has himself – and they often do not have the resources to take a case forward.

He is planning to ask questions in parliament to try to probe how well the Equality Act is working.

Although he is not yet ready to call for criminalisation of discrimination, he says “it has got to be on the agenda”.

He wants the new government to “give some serious consideration as to how people can be supported in this area, and whether that includes criminalisation”.

He was speaking before Liberal Democrat party leader Ed Davey appointed him yesterday (Wednesday) as the party’s new work and pensions spokesperson.

Although he told DNS that championing his local community – Torbay – would be the “backbone” of his work and that he did not want to be “defined by my disability”, he also said he would be “quite happy to stand up and be counted on certain issues”, and has already spoken up publicly on discrimination by hotels against guests with guide dogs.

Darling, who was leader of Torbay council in Devon between 2019 and 2023, said his campaigning priorities in parliament were likely to be keeping sewage out of the sea – as a keen sea kayaker and swimmer, and MP for the “English Riviera” – the NHS and social care, and the cost-of-living crisis.

But, he said, one of the things that “gets me up in the morning is affordable housing, and the desperate need for social rented housing” – in Torbay, there is a significant shortage – while he told DNS he would hope to ask questions in parliament on accessible housing, and on the “serious issue” of safeguarding concerns around universal credit.

Another issue he said was “really important” and “close to my heart”, as someone who was adopted as a baby in Birmingham and 15 years ago tracked down his birth mother – who by coincidence had also moved to south Devon, just six miles away from where he lived – is children’s services, including fostering and adoption.

When leading Torbay council, he improved children’s services from “failing” to “good” in just two years.

And having a “bit of a messy background” means that care-experienced young people and issues around supporting families “are really important to me”, he said.

His experience of running Torbay council for four years and being a local councillor for 30 years means he is “immersed” in the area and knows “an awful lot of people in Torbay” and the “key players”, so he believes he will be able to “hit the ground running as the new MP”.

Darling is highly complimentary about the work of the “really helpful” House of Commons staff and their “very, very strong” customer service ethos, and he said the parliamentary authorities had “bent over backwards” to support him as a new disabled MP.

Despite that support, he said there were still access issues within parliament, such as the lack of clear signage.

He compares the experience of being a new MP to being “shot off into space” with only “half the controls around you, if that” while “there might be a wheel missing off the aircraft, and probably half a wing”.

He had hoped to be settled in and up to date with casework by the middle of August but now fears it could take him until Christmas, thanks to delays with appointing staff, finding a flat in London, and sorting out support workers, while also dealing with the daily “deluge of emails”.

Darling also said he believed figures obtained by DNS through a freedom of information request – which showed at least 43 out of a total of 650 MPs had discussed the possibility of having disability-related adjustments made for them – were “extremely helpful”.

He said: “It’s so important that elected representatives reflect our communities, but it’s also important that there are people, whether on local authorities or in parliament, who have a lived experience and can bring their experiences to bear on legislation or reports that are being discussed.”

19 September 2024

 

 

Labour makes ‘unthinkable’ and ‘exclusionary’ decision to sideline disabled people from DWP ‘inactivity’ board

Campaigners have criticised the Labour government’s “hugely disappointing” and “exclusionary” decision to set up a board of experts to examine “economic inactivity” without appointing a single representative of a disabled people’s organisation.

Work and pensions secretary Liz Kendall appears to have failed to appoint any disabled experts to the Labour Market Advisory Board, even though she made it clear that its key aim was tackling the “spiralling inactivity” caused by a record number of people out of work due to long-term sickness.

Kendall said: “The board’s knowledge, expertise and insight will help us to rebuild Britain as we deliver our growth mission, drive up opportunity and make every part of the country better off.”

But the eight members of the board, labour market experts from across business, industrial relations and academia, do not appear to include any disabled experts and certainly do not include representatives of any disabled people’s organisations (DPOs).

In its general election manifesto, Labour said it was “committed to championing the rights of disabled people and to the principle of working with them, so that their views and voices will be at the heart of all we do”.

But disabled campaigners contacted this week by Disability News Service were united in their frustration at the failure to include any representatives of DPOs, and apparently any disabled people, on the board.

Disabled researcher Stef Benstead, author of Second Class Citizens, which describes the harm caused to disabled people by a decade of cuts and reforms, said: “It should not be thinkable for any modern government department to have an advisory board that does not include representatives of the community impacted by the policy proposals.”

Catherine Hale, consultant researcher at King’s College London and founder of Chronic Illness Inclusion, said: “It’s clear that people with long-term physical and mental health conditions are the key target of this initiative and that their ‘inactivity’ is being framed as the problem.

“For a start, as someone with lived experience of labour market exclusion who is trying to cut through the noise with new research and policy proposals, it is frustrating that this board appears to be made up exclusively of non-disabled economists and policy professionals.

“On top of being marginalised from work, and from society, I and others find ourselves also marginalised from debates about work and our place in it.”

Dan White, policy and campaigns officer for Disability Rights UK, said it was “hugely disappointing that not one disabled people’s organisation or disabled people’s expert representative” was on the board, despite Labour’s past commitments to involving disabled people in developing policy.

He said: “With the government turning its back on lifting people out of poverty and ill health through investing in social security, education, health, social care or social housing, it’s very unlikely that employment programmes alone will work.

“Nevertheless, surely disabled people should be the first port of call for ideas, experience and delivery of programmes.

“Would any other group be left out of an expert board that is focused on their future?”

At its first meeting, the new members of the board apparently offered “new approaches to shape government work on economic inactivity, tackling the root causes for people remaining out of work such as poor physical and mental health, and how the group can help the government reach its ambition of an 80 per cent employment rate”.

Inclusion London said it was “extremely concerned” that disabled people were “once again missing from an important forum where programmes targeting us will be shaped”.

Julia Modern, Inclusion London’s senior policy and campaigns manager, said that, under the UN Convention on the Rights of Persons with Disabilities, the government is obliged to consult with disabled people.

She said: “Doing so also makes policies more likely to succeed – people who experience barriers to work are the best placed to identify them and propose solutions.

“Without our input, the new board will be as ineffective as it is exclusionary.”

Despite the concerns about the lack of involvement of disabled people, there was support for the appointment of Professor Paul Gregg, who has studied the UK labour market for several decades, as chair of the new board.

Gregg conducted a review of personalised support and conditionality in the social security system for the Department for Work and Pensions in 2009 and helped design employment and support allowance (ESA), but was later highly critical of the work capability assessment (WCA), the test used to determine eligibility for ESA and linked with hundreds, and probably thousands, of deaths.

Kaliya Franklin, who was a leading member of the grassroots Spartacus Network in the post-2010 years, and spent years researching the flawed WCA, said: “The new government’s focus on labour market participation is to be welcomed after years where the primary policy focus has been how to increase conditionality and punitive sanctions on people with complex, intersectional barriers to work.

“It is positive to see the range of expertise on the board includes people such as Paul Gregg.

“Harnessing the true potential of the labour market is a laudable ambition, particularly given the low rates of employment for disabled people.

“However, the failure to include representation on the board from disabled people, those with caring responsibilities, organisations of or even for disabled people is deeply disappointing.

“It is difficult to see how it will be possible to fulfil that potential when the perspective and expertise of disabled people has been excluded from the very board aiming to address economic inactivity driven by impairment and poor health.”

Professor Ben Baumberg Geiger, co-lead on the work, welfare reform and mental health programme for the ESRC* Centre for Society and Mental Health at King’s College London, who has also welcomed Gregg’s appointment, told DNS: “The Labour Market Advisory Board is a really positive development – a way of getting independent advice from knowledgeable, committed people.

“But it would have been better if the government had included a disabled people’s representative on the board.

“Not only would this be an important signal of listening to disabled people’s voices, but it would have provided crucial expertise to help the board’s work too.

“It’s not too late to fix this.”

In its response to concerns about the make-up of the board, DWP refused to explain why there was no disabled people’s representative on the board.

Instead, a spokesperson said: “We are committed to championing the rights of disabled people so their views and voices are at the heart of all we do.”

*The Economic and Social Research Council

19 September 2024

 

 

Co-production ‘will not be possible without funding from government’

The leading disabled people’s organisation (DPO) in Wales has warned the Welsh and UK governments that co-production of policy with disabled people will not be possible if they fail to provide the funding that they and other DPOs need to survive.

Disability Wales spoke out after it reported a “significant” cut in the funding it receives from the Welsh government, which has contributed to its decision to cut the equivalent of two full-time jobs and launch a restructuring process.

Its equality and inclusion grant from the Welsh government has remained “static” for the last six years, but it has also lost additional funding which effectively doubled its grant and enabled it to carry out specific projects, such as responding to the cost-of-living crisis and promoting understanding of the social model of disability.

Rhian Davies, chief executive of Disability Wales, told Disability News Service that a “bruising” decade and more of austerity, the Covid pandemic and the cost-of-living crisis had left her organisation and many local DPOs across the country struggling to survive.

She said: “There is a risk that all the rights we thought we secured 20-odd years ago could slip further back.”

The Welsh government and other public bodies have repeatedly stressed their support for engagement and co-production with disabled people and their organisations.

But Davies said her organisation needed to send a strong message to both the Welsh and UK governments, and other public bodies and funders, that this co-production of policy is not possible without proper funding.

She said: “I think there needs to be that recognition that this engagement with disabled people isn’t going to happen if it is not resourced.”

Because of the funding cuts, Disability Wales now has the equivalent of five full-time members of staff, down from 12 during the pandemic when there was funding for several short-term projects.

As well as a review of its structure, Disability Wales plans to survey its members to ask for their views on how they engage with the organisation and what they think its campaign priorities should be.

Davies urged the Welsh government “to acknowledge the crucial role of disabled people’s organisations and commit to providing essential financial support as a key component” in the draft disability action plan it is set to publish and consult on this autumn.

The action plan follows the work of the Disability Rights Taskforce, set up by the Welsh government following the 2021 publication of the groundbreaking Locked Out report on the discrimination experienced by disabled people in Wales, particularly during the pandemic.

Nearly 40 per cent of disabled people in Wales live in poverty, and nearly seven in 10 of those who died Covid-related deaths during the pandemic were disabled people, compared with about six in 10 in England and Wales.

Disability Wales has played a key role on the Disability Rights Taskforce, with Davies herself chairing its independent living working group, and disabled people making up the majority of the 300-plus people who took part in its work examining barriers in areas such as housing, health and transport.

Davies said she hoped there would be positive announcements on co-production in the draft action plan, and a recognition that Disability Wales and other DPOs need to be funded for the vital work they do.

She added: “Public bodies support co-production, but they don’t invest in it, they don’t recognize that it needs to be resourced to enable people to participate equally, and I think that’s the problem.

“Obviously we’ve been trying to raise these issues through the taskforce, and I would want to see that recognised in the action plan, but this is all set against quite a bleak financial landscape.”

But Davies said that without well-funded DPOs, individual disabled people would not be able to access their rights or influence disability-related policy.

She said: “In order for disabled people to exercise the rights they have, they need to be empowered, they need to know what those rights are, they need to have access to resources that enable them to make those rights a reality.

“That is often the role of DPOs, to provide peer support, to provide information.

“And if that structure is not there, then where do individual disabled people turn?”

*Disability Wales is one of the DPOs that subscribe to Disability News Service

19 September 2024

 

 

Lib Dem conference: Party pushes for assisted suicide despite concerns over lack of ‘watertight’ safeguards

Legalising assisted suicide is “the next great Liberal reform”, party members have been told, as the Liberal Democrats appear set to try to force through a change in the law in the coming months, despite continuing concerns over safeguards.

Despite significant anxiety – raised as an issue by Disability News Service and others in a fringe meeting – about the safety of any new laws, there appears to be strong support for such a move within the party.

More than 100 party members who attended the fringe event at the conference in Brighton heard Liberal Democrat MP Christine Jardine compare legalising assisted suicide to other Liberal-led reforms such as legalising abortion and same-sex marriage.

Jardine, the party’s spokesperson on women and equalities, said she wanted to be part of a “historic” moment by helping to force legislation through parliament.

One party member said the fringe meeting was “the most important event” he had attended at the conference, despite the Liberal Democrats celebrating the election of 72 MPs in July.

The campaigning organisation Dignity in Dying insists that it only wants to legalise assisted suicide – which it calls assisted dying – for those who are terminally-ill, but party members at the meeting still questioned why people with dementia or mental distress could not be included under a new law.

Three disabled people did ask questions about safeguards and the fears held by many disabled people about legalisation.

One disabled party member asked: “What are the safeguards in the bill that no mistakes will be made in the decision process between the doctor and the patient?”

Jardine committed herself to supporting new legislation only if the safeguards were “watertight”.

Disability News Service (DNS) pointed out that some supporters of a change in the law had accepted that no safeguards could be watertight, and so some people would inevitably die when they did not actually want to, if the law was introduced.

Professor Tom Shakespeare, a disabled academic who supports legalisation, has previously told DNS that safeguards were “very important” but that “even the best safeguard is not infallible” and “any law can be bypassed”.

When DNS asked the panel of speakers how many such deaths they thought would be acceptable, Jardine promised that she would “not work to get a law through the House of Commons that left any possibility that people’s lives could be lost without their actual consent.

“I don’t think any member of parliament would… go down that route with any bill that comes before us.

“We will not accept the possibility of a law which allows people to die against their will. That won’t happen.

“You have to be very, very careful that it is about individuals themselves, it’s about their will and that the law is absolutely watertight. Otherwise, it’s not acceptable.”

Concerns were also raised by Katharine Macy, who chairs the Liberal Democrat Disability Association (LDDA).

Although Macy is “incredibly, incredibly supportive of assisted dying”, they said many LDDA members “are terrified of this”.

They told DNS later that they had “always felt very strongly [about legalisation] because everyone I love who has died, has died of cancer, and I still have nightmares that my fiancé is alive and still dying”.

They said they were only in favour of assisted suicide for those who were terminally-ill, and that they “a hundred per cent see why most of my members are scared”, because “it feels very close to eugenics” and “if you are disabled, people think your life is not worth living”.

As an autistic person, their PhD is about “how autistic people are vital to our evolution”.

Macy said that the genetics that create the potential for autism have been around for 30 million years.

They said: “We won’t go anywhere, but if some people had their way, we would. And at what point does someone look at someone like me and decide that I’m not worth it?”

They also said that “we cannot allow assisted dying to be legalised without palliative care being good enough that you actually have an option”.

And they said that “disabled people know how awful the social care is, how awful healthcare and how awful palliative care is”.

But they said they still believed that legalising assisted suicide “will do more good than harm”.

The fringe meeting focused strongly on people who are terminally-ill with cancer.

Sophie Blake, a former Sky Sports reporter and a Dignity in Dying campaigner, described her experience of stage four incurable secondary breast cancer, and told the meeting: “A terminal diagnosis is devastating and overwhelming enough but the fear of suffering at the end adds even more trauma.”

She said she had lost family and friends to cancer and told the meeting that the current “dreadful laws” were “outdated and archaic”.

Professor Aneez Esmail, professor of general practice at Manchester University and a Dignity in Dying board member, said he believed assisted suicide should be “just one component of palliative care”.

Rabbi Dr Jonathan Romain, chair of Religious Alliance for Dignity in Dying, who chaired the meeting, repeatedly claimed that the bill did not affect disabled people, apparently suggesting that terminally-ill people are not disabled.

He attacked those who oppose legalisation – which includes many disabled people – telling the meeting that it was “sheer arrogance for one group of people to use their views to determine that other people should [continue living] in pain”.

Jardine said she believed that most of her party’s MPs were “committed to making sure we are at the heart of this”.

But her party’s leader, Sir Ed Davey, has expressed concerns about legalisation, and said this week that he was “a sceptic”.

As a teenager, he cared for his mother when she was dying from bone cancer, and he told Sky News that through nursing and palliative care she was able to “enjoy life” while terminally-ill.

He also raised concerns that older people could feel pressure to seek an assisted suicide because they think they are “a burden”.

His views came as reports suggested that Labour’s prime minister, Sir Keir Starmer, wanted to fast-track a private members’ bill that legalised assisted suicide through the Commons, perhaps before Christmas.

In response to those reports, disabled academic Dr Miro Griffiths, from the campaign group Better Way, which opposes legalisation, said: “Reports at the weekend that the government is considering ‘fast-tracking’ an assisted suicide bill through parliament are deeply concerning.

“A change in the law would have profound moral and social implications for the UK. No law should be rushed, and especially a law of this nature.

“If these reports are accurate, we urge the prime minister not to rush through legislation on this matter and meet with a wide range of stakeholders.

“This proposal is particularly concerning to groups representing vulnerable adults, disabled people, and those working tirelessly to prevent suicide.

“We will continue to fight their corner.”

19 September 2024

 

 

Lib Dem conference: Party ‘must campaign to save social care and NHS like our lives depend on it’

The Liberal Democrats’ deputy leader has told her party to campaign to save social care and the NHS “like our lives depend on it”.

Daisy Cooper told her party’s annual conference that good health and social services “transform people’s lives” and that the top priority in parliament for Liberal Democrat MPs would be championing “local health and care services”.

Rather than attacking the Labour government’s failure to act on social care funding since winning power in July, she focused her criticism on the Conservatives.

She said successive Conservative governments had broken their promise to fix social care.

She was speaking as her party’s health and social care spokesperson, but was moved to the Treasury role yesterday (Wednesday) and will be replaced by Helen Morgan.

Cooper said her party had put health and care at the forefront of its successful general election campaign – which led to a record-breaking 72 Liberal Democrat MPs – because “decent health and care services are the bedrock of a liberal society”.

She said this was why the Liberal Democrats were calling on the Labour government to “make the autumn budget a budget to save the NHS and care”.

She told the conference: “We Liberal Democrats must continue to campaign to save our NHS and care like our lives depend on it.

“Because I know, and we know, that so many people’s lives really do.”

She said health was about individual freedom and “you don’t have freedom, if you’re ready to leave hospital and go home, but you’re discharged instead to a care home miles away – losing mobility, independence and connection – for the sole reason that there aren’t the care workers to help you recover at home”.

Cooper spoke in detail publicly for the first time about how, 12 years ago, an aggressive form of Crohn’s disease had left her four days from dying, but how the NHS saved her life and “the people who make the NHS what it is gave me my life back”.

The previous day, party members had overwhelmingly backed a motion that called – as the party had during the election campaign – for free personal care, action to support unpaid carers, and a social care workforce plan.

The motion, which included several measures to “save the NHS”, also called again for cross-party talks on sustainable social care funding, and for funding for local authorities to cover the increased costs resulting from these social care measures.

Prue Bray, deputy leader of Wokingham Council and chair of the Association of Liberal Democrat Councillors, said there was a need to “inject enough backbone” into both Labour and the Conservatives to tackle the social care crisis.

She said it was not possible to “fix the NHS without fixing social care”, which “requires cross party commitment to a national funding solution”.

Bray said the cost of adult social care was “one of the main factors cited by councils who feel themselves heading for the cliff edge on a section 114 notice, the equivalent of declaring bankruptcy”.

North Cornwall MP Ben Maguire said Liberal Democrats in parliament “must be more than just a critical friend to this Labour government, who have already demonstrated that social care reform is not top of their agenda” and “must step into the void that the Conservatives have left us while they tear themselves apart”.

Simon Lepori, a councillor with Trafford council, who stood for the party in Wythenshawe and Sale East at the general election and has worked in health and social care for 23 years, supported the motion.

But he said he wanted the party to develop a separate social care motion in time for the next annual conference, rather than one combined with NHS issues, because social care was “a forgotten service”.

Daisy Cooper told the debate that when YouGov polled the popularity of policies in parties’ general election manifestos, the top three were Liberal Democrat policies, and one of them was the pledge to introduce free personal care.

She said the Conservatives had spent their time in government “driving our NHS and care into the ground”.

She added: “Labour have made a start, and we appreciate that their inheritance is dire, but with social care and health services in crisis, more is needed.

“It is now our job to make sure that Labour sticks to the job of repairing the damage and delivering quality care for patients.

“That starts by pressuring them to fix our crumbling hospitals and to end the crisis in social care.”

19 September 2024

 

 

Discrimination court win over UK’s ‘worst’ station for assistance ‘shows need for reform and culture change’

A judge has ordered Network Rail to compensate an access campaigner who was abandoned in a waiting-area after booking assistance at a station known among disabled passengers for providing the country’s worst assisted travel service.

Euston, the gateway for services from London to Birmingham, Liverpool, Manchester, Edinburgh and Glasgow, developed a reputation for assistance failures that was so bad that disabled people began using the hashtag #EustonWeHaveAProblem.

Doug Paulley, a leading campaigner on disability rights and accessible transport, won his case against Network Rail this week – and compensation of £1,325 – after taking a case for disability discrimination to the county court.

He and others have been raising concerns about Euston for years, with other disabled passengers branding it “the worst station for assistance in the country”, and an “absolute disgrace”.

Leeds County Court heard that Paulley had booked assistance to help him with his luggage, finding his seat and boarding the sleeper service from Euston to Fort William in Scotland, on the evening of 6 March 2023.

But assistance staff failed to collect him from the first-class lounge, where he had said when booking assistance that he would be waiting, and where disabled passengers staying in accessible rooms on the sleeper service are allowed to wait*.

As a result, he had to make his own way through the crowded station and managed to board with support from the train operator Caledonian Sleeper with just a few minutes to spare before its departure.

Network Rail later claimed that no-one had let their assistance team know that Paulley was waiting, even though he had watched staff call the team from the lounge, and the details of where he would be waiting were included in his booking.

Network Rail had admitted that the much-criticised Passenger Assist mobile phone app and the “conduct” of the passenger assistance team at Euston had “created scope for confusion” over the booking, but it initially denied that its assistance team had been told of his arrival in the first-class lounge.

It eventually admitted during the court hearing that – contrary to what it had claimed in its defence – disabled people who have booked assistance do not have to report to the Euston assisted travel lounge.

Network Rail also eventually admitted that phone calls from the first-class lounge were made to the assistance staff at Euston, and that it had breached its duty to make reasonable adjustments under the Equality Act.

The court found that Network Rail had discriminated against Paulley, and that the incident had “undoubtedly caused stress, anxiety and loss of confidence”, although it found insufficient evidence of a “systemic failing” at Euston.

District judge Royle awarded Paulley £1,325 damages for injury to feelings, due to the discrimination he had experienced through Network Rail failing to escort him to the Caledonian Sleeper.

Paulley told Disability News Service: “It is the busiest station for assistance in the country and it seems to have more than its fair share of unacceptable failures.

“What bothered me wasn’t so much the hassle on the day of waiting for assistance that didn’t arrive and of having to make my own way down to the platform, it was the failure, once again, of the system.

“That system is there solely to supposedly ensure that disabled travellers can have some confidence in being able to travel with comparative ease and in safety.

“We all know that it frequently doesn’t work on the UK rail network, as demonstrated by Tanni the other week, and as so many of us experience in Euston.

“So I felt a dreaded sense of ‘here we go again’ with yet another repeat experience of failed assistance booking at Euston.”

He said he now hoped Network Rail would accept and explain its failure.

But he said what was really needed was “full reform”, with the introduction of level boarding, “scrapping Euston and starting again”, and a culture change so that a breach of passenger assistance is seen as “as much a critical incident as passing a signal at danger”.

But he added: “That won’t happen any time soon, though, so in the meantime, I’m looking forward to seeing their cheque; as I will every time they do an assistance fail.”

Network Rail had not responded to requests to comment on the case by noon today (Thursday).

*Disabled passengers are allowed to wait in the lounge because it includes an accessible shower, whereas the showers on the Caledonian Sleeper are all inaccessible

19 September 2024

 

 

Lib Dem conference: Rising star calls on their party to ‘walk the walk’ on disability

A disabled rising star in the Liberal Democrats has spoken of their plans to ensure their party does more to draw on the creativity and unique contribution that disabled people can make to politics.

Among their plans, Katharine Macy is hoping to push their party towards drawing up a wide-ranging disability policy paper, and to fund training for disabled members who want to become MPs.

Macy, who chairs the Liberal Democrat Disability Association (LDDA), played a significant role in developing the party’s policies on carers that were central to this summer’s successful general election campaign.

They are now hoping to help put together a policy paper on disability in time for next autumn’s conference.

Speaking at this week’s party conference in Brighton, Macy said they hope some of the extra funding the party now has because of its election success – with 72 MPs elected in July – is “directed to diversity” and ensures the party are “putting their money where their mouth is”.

They told Disability News Service (DNS): “We talk the talk, and we need to make sure that we’re going to walk the walk.

“It’s been a really good conference, and I think everyone is really eager to go, ‘what next?’ but not just in terms of the basic political successes, but in terms of making sure we are more diverse.”

Macy, who stood for the party in Colne Valley at the general election, said the policies in any disability paper would have to be “realistic”, fully-costed, “Liberal”, and “radical and forward-thinking”.

Some of them are certain to focus on benefits.

They said: “If we sort the benefits system out, a lot of disabled people who are on benefits will be able to have the safety and security to start exploring getting into work, if that’s what they are able to do.”

Macy drafted the party’s original young carers policy in 2019, at a Young Liberals event, which later led to them thanking Ed Davey – who himself had been a young carer as a teenager when his mother was terminally-ill with cancer – for writing an article about the motion when it was debated at a national level by the party.

That motion kickstarted Davey’s focus on care and was a cornerstone of the party’s manifesto at the last election.

Macy said: “It was lovely to hear there was an MP who understands what it’s like being a carer.

“And then the 2024 election was all about that, and words that I had written at the age of 21 were directly copied and pasted into the manifesto.”

They wrote the party’s young carers’ policy and helped amend the overall carers’ policy that followed later, which included a call in the election manifesto for carers to be protected under the Equality Act, which Macy said was “something I’ve been pushing for for years”.

There are also crucial intersectional issues they have been able to draw attention to, as carers are far more likely to be disabled themselves than the general population.

They are full of praise for their party leader, who they say is “incredibly brave to be so vulnerable, to be so honest” about his own experiences as a carer for both his mother and now his disabled son.

Macy has previously told DNS – in a profile published shortly before the general election – of their own experience, from the age of about 10, of growing up with an undiagnosed neurodivergent mother who was unable to work.

They have been using their time at conference this week to “really push disability, ensure that I’m talking to the right people, and getting ideas on how to make sure the party is held to account” on disability issues and that disabled members “are being taken seriously”.

One aspect is pushing for there to be a disabled representative on all the party’s policy working groups “to ensure we’re represented”.

They said: “We aren’t just people that are living on benefits and go to healthcare centres.

“We get educated, we work, we go and have fun sometimes, and we need to be remembered.

“I do think the Lib Dems are the best party on this, but… that doesn’t mean we can’t get better. And we will get better, if I’ve got anything to do about it.”

Macy added: “I’d really like to focus on how disabled people can bring something unique to politics.

“We see the world differently, partly sometimes because we physically have to… but also because we have to be creative, and creativity in politics is vital.”

One of their hopes is to reach out to disabled people who are not currently party members.

Another key focus is developing training for disabled members who want to become MPs, emulating a “gender balance” scheme that has trained 28 of the 32 women who are Liberal Democrat MPs.

Macy said: “Obviously, there are a lot more literal barriers with disabled people.

“It’s not as simple as building confidence and teaching how to manage discrimination, but I’m going to give it a go.”

19 September 2024

 

 

Other disability-related stories covered by mainstream media this week

An attempt by Nadine Dorries to block a statutory inquiry into thousands of mental health deaths cost more lives, a bereaved mother has told the hearing. Melanie Leahy campaigned for years for a public inquiry into the death of her 20-year-old son, Matthew, and hundreds of other people failed by mental health care in Essex. It finally began last week after a long battle with ministers, including Dorries when she was a health minister in the last government: https://www.theguardian.com/politics/2024/sep/17/mother-tells-hearing-nadine-dorries-caused-mental-health-deaths-by-blocking-inquiry

Children with special educational needs (SEN) in England have slipped further behind their peers in reading, writing and maths, despite recent legislation and advances in teaching making their education a high priority. School leaders described the results as “incredibly disheartening”, and called for better specialist support and funding to avoid the collapse of England’s SEN system: https://www.theguardian.com/education/2024/sep/19/incredibly-disheartening-decline-in-special-needs-pupil-attainment-in-england

19 September 2024

 

News provided by John Pring at www.disabilitynewsservice.com

 

Contents

DWP admits ‘shocking’ and ‘negligent’ five-year failure to appoint a chief medical adviser 1

Hospitals would not initially be protected from electricity cuts in a ‘national power outage’, government admits 3

Disability justice project hopes to secure support across the country 6

London Assembly gives unanimous backing to DPO’s call for a disability equality champion for the capital 8

Disabled campaigners call on government to take seven key steps in response to final Grenfell report 10

‘Risk of serious harm’ if council goes ahead with telecare charges, say disabled campaigners 12

Commons confirms MPs received DWP ‘violence’ book, as Reeves warns of ‘difficult’ decisions on ‘welfare’ 13

Other disability-related stories covered by mainstream media this week 16

 

 

DWP admits ‘shocking’ and ‘negligent’ five-year failure to appoint a chief medical adviser

The Department for Work and Pensions (DWP) has admitted that it failed to appoint a chief medical adviser for more than five years, at a time when its policy decisions were causing countless deaths of disabled benefit claimants.

The department failed even to appoint a medical professional to fill the post in an interim capacity between July 2017 and November 2022.

The failure to fill the post – described as “criminally negligent” and “absolutely shocking” by disabled activists this week – has only emerged in response to a freedom of information request from Disability News Service (DNS).

Following the departure of Dr Bill Gunnyeon – who “retired” from the post in 2014, and then waited just six months before joining the US outsourcing giant Maximus to work on both its work capability assessment (WCA) and Fit for Work contracts – DWP appointed Dr Pui Ling Li.

She was in post until July 2017.

But DWP admitted this week that from July 2017 to November 2022 “there was no Chief Medical Adviser in DWP”.

A job listing for the position* from the summer of 2021 said the successful candidate would “ensure expert clinical advice informs policy, legislation and delivery decisions on social security and employment benefits and services – including the Personal Independence Payment [PIP] and Employment and Support Allowance”.

During the five-year period without a chief medical adviser, a series of high-profile deaths were closely linked to DWP’s actions and failures, including those of Errol Graham, Roy Curtis, James Oliver, Philippa Day, Christian Wilcox, Philip Pakree, Ker Featherstone, and Kevin Gale, who took his own life on 4 March 2022 after he became overwhelmed by the universal credit application process.

It was also a period when DWP’s own figures showed the number of its secret internal process reviews into deaths of benefit claimants more than doubled over three years; and the Commons work and pensions committee found the benefits assessment system to be undermined by a “pervasive culture of mistrust”. 

During these five years, DWP also secretly abandoned work on a £106 million plan that was supposed to prevent suicides and other deaths of benefit claimants, learn from its mistakes, and deliver reform “for the most vulnerable in society”.

In November 2022, the department finally made an interim appointment, with Dr Emily Pikett taking up the role until last September, when DWP appointed the current chief medical adviser, Dr Gail Allsopp, who does not provide her surname on her LinkedIn profile – describing herself as Gail A – and does not appear to be mentioned anywhere on the DWP website.

A spokesperson for the grassroots, user-led mental health group Recovery in the Bin, said: “This is another criminally negligent act by the DWP, while not being unusual across the shambolic government of the last 15 years.

“It simply emphasises that they truly did not think they had a duty of care and were completely careless as to what harm they did.

“Actions speak louder than words and this says loudly they do not consider us as human beings deserving of rights and respect.

“It also shows the fake medical show trials the WCA and PIP assessments really are.” 

Paula Peters, a member of the national steering group of Disabled People Against Cuts, said DWP’s failure to ensure it had a chief medical adviser was “absolutely shocking and appalling” and “downright negligent”.  

She said: “Yet again this shows the callous disregard the department has for claimants’ lives and safety and the total lack of empathy the department has towards families when they know that disabled people are dying as a result of their cruel and callous policies.

“They must be held to account for this and hard-hitting questions must be put to ministers to explain why there was no chief medical officer in post at the DWP for five years.”

DWP had not been able to comment by 1pm today (Thursday) on the failure to appoint a chief medical adviser for five years, despite a request being emailed to its press office by DNS on Tuesday morning.

DNS editor John Pring had submitted the freedom of information request to check on a claim made during an interview with DWP’s former chief medical adviser, Professor Sir Mansel Aylward.

During the interview in March 2023 for Pring’s book, The Department*, Professor Aylward promised to contact the current holder of the role with questions about the WCA.

Professor Aylward, who died on 29 May this year after a long illness, promised in the interview that he would investigate why the assessment – which was based on the “all work test” he developed in the early 1990s – had been linked to hundreds of suicides between 2010 and 2013.

He told Pring last year: “I have to do some background reading, obviously, but I don’t want something that I was associated with in developing being a cause of so much stress that people commit suicide.”

He promised to contact DWP’s current chief medical adviser to ask them about the training given to those who now carry out WCAs, how their work is monitored, and “why there are so many deaths”.

He said: “Because he must know, mustn’t he? Well, we want to look into it so you can, you know, put that element into your book as well.”

Professional Aylward had long been a controversial figure among disabled activists for his role in developing the all work test, and his links to the biopsychosocial model of health – which has played a hugely influential role in the department’s assessment systems – and the US disability insurance giant Unum.

Soon after last year’s interview, he became seriously ill with pancreatic cancer.

When Pring spoke to his wife in July 2023, she said he probably had just months or even weeks to live but still wanted to “set the record straight”.

She asked Pring to email some follow-up questions, but Professor Aylward never responded to them.

As well as asking for details of all DWP’s chief medical advisers since Gunnyeon’s retirement, Pring asked DWP in the freedom of information request whether Professor Aylward had written to the current chief medical adviser, as he had promised to do.

In response to the request, DWP said: “Following a search of our paper and electronic records, we have established that the information you requested is not held by this Department and advise that Professor Sir Mansel Aylward died in May 2024.”

*Although this post is described as “head medical practitioner”, it is believed to be the same role as chief medical adviser

**The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by John Pring, is published by Pluto Press 

12 September 2024

 

 

Hospitals would not initially be protected from electricity cuts in a ‘national power outage’, government admits

Hospitals and other “priority customers” would not be protected from power cuts in the first days of an unplanned “national power outage”, according to new information from a secret government report on the possible impact on disabled people.

The information – previously redacted by the Department of Health and Social Care (DHSC) – is part of an internal “scoping paper”*, produced in July 2023, which examined the possible impact of such national power emergencies on disabled people who rely on medical equipment at home.

The new information still does not provide a full picture of how the government would protect this group, and it appears that they would be expected to have made their own plans for such an emergency.

DHSC only released the redacted information after being told to do so by the information commissioner, following a complaint by Disability News Service (DNS).

The commissioner concluded in a decision notice that the department’s arguments for preventing the release of the redacted information were outweighed by the public interest in disclosing it to DNS.

The new information released by DHSC suggests that, in a “reasonable worst-case scenario” and in the first 48 to 72 hours of a national power outage, “no sites would be protected from power outages”, including hospitals.

Only after an electricity supply emergency code (ESEC) was implemented, which could take three days, would “priority customers”, including “certain hospitals”, be protected from “rolling outages”, although there would still be “no domestic exceptions”.

The scoping paper also reveals how – as well as disabled people reliant on medical equipment being subject to these rolling power cuts, probably in three-hour blocks – the national power outage would have numerous “secondary impacts” on “vulnerable people”, including on water, food, communications, transport, fuel and healthcare settings.

It warns of “severe impacts to the majority of water and sewage treatment sites… and therefore regions served by the sites impacted will not have a guaranteed continuous clean water supply”, while local disruption to food supply could affect the public’s ability to “maintain adequate food supplies”.

The public would not be able to call the 999 emergency service from most landline phones, while mobiles could only be used to call 999 if they had been adequately charged.

The paper also warns of “the potential sudden need for emergency admissions to hospitals and the burden this would put on an already stretched service, both in terms of bed capacity, staffing and the knock-on effect to other services”.

It suggests there are between 70,000 and 250,000 people who depend on electricity supply for medical equipment at home, but these numbers appear to rely on power industry figures and are likely to be an under-estimate.

DHSC stressed this week that the redacted information was taken from “worst-case scenario planning assumptions” that were “not a forecast or prediction but a standard tool to support prudent resilience and contingency planning for a wide range of scenarios, even those unlikely to occur”.

It added: “The UK has a secure and diverse energy system which has demonstrated its reliability over the past two years by delivering gas and electricity supplies when needed amidst a period characterised by high energy prices.

“The outlook for the coming winter is positive.”

The scoping paper was drawn up to consider what advice was available for disabled people who rely on mains-powered medical devices at home and whether there was a need for DHSC to issue its own guidance.

But DHSC decided not to draw up any guidance and to leave it to individual disabled people and their “care teams” to draw up plans for “how they can prepare for and respond to loss of power to their home”.

Information previously released by DHSC and reported by DNS showed the paper suggesting that such disabled people should “take individual responsibility for their own preparedness”.

That conclusion was reached even though the document makes clear that some disabled people could be “at very high risk of catastrophic deterioration” if the power cut was unexpected or continued for longer than their equipment’s batteries lasted.

The paper also admitted that there were significant flaws with the system of local priority services registers (PSRs), which are supposed to ensure energy companies provide “enhanced support to their more vulnerable customers”.

Those who sign up can be warned in some circumstances when their power is about to be cut off and can be signposted to support, but they are not exempt from blackouts, and if they need a continuous supply of electricity for medical reasons they are told to “seek advice from their local health service provider”.

The DHSC paper also warned that there were “barriers” that prevented many of those eligible from signing up to a PSR, while there was “an issue” with knowing how many devices supporting those with “the more critical conditions” were being used in people’s homes.

The scoping paper also admitted that “in a national power outage scenario it would not be possible to notify PSR households pre-emptively” that they were about to lose electricity.

And it stated that in a “reasonable worst-case scenario” in at least some types of “national power outage”, services such as providing emergency power to those on the PSR who rely on “at home medical equipment” would “not be available due to the scale and complexity of the outage”.

The attempt to secure the missing information from the scoping paper was the latest effort by DNS over the last two years – in the face of resistance from the last Conservative government – to find out what plans ministers had put in place to protect people who rely on equipment such as ventilators, oxygen concentrators and dialysis machines in the event of a major blackout.

DHSC declined to say this week if it believed the risks facing disabled people who use medical equipment at home had changed since the scoping study was produced last year, or if the new government was comfortable with the concerns raised about the risks they would face in the first two to three days of a national power outage.

It also declined to say if the new government believed that preparations for this group of disabled people were now adequate, in the event of a national power emergency this winter.

But a DHSC spokesperson said in a statement: “The UK has a secure and diverse energy system, and we remain confident that the gas and electricity system operators have the tools they need to effectively balance supply and demand in a wide range of scenarios, as they have done in previous years.

“We prepare for a wide range of risks, even those unlikely to occur, as set out in the National Risk Register.

“We launched the Prepare campaign in May to help the public take simple and effective steps to be more prepared for risks, which includes information for what to do in a power cut and advice for users of medical devices.”

The Prepare website includes advice for disabled people and information on what to do in a power outage.

But the website includes no new information for disabled people who need to use medical equipment at home, relying instead on DHSC’s previous position that they should “make a plan” in advance with their “care provider, clinical care team and/or equipment supplier”.

*Rolling Power Outages: Medical Equipment and Vulnerable People

12 September 2024

 

 

Disability justice project hopes to secure support across the country

A disabled people’s organisation is hoping its new disability justice project will draw support from across the country and create change in both government policy and public attitudes, as well as addressing the sense of “inevitability” around disability poverty.

One of Inclusion Barnet’s early targets will be to persuade the new Labour government to scrap proposed changes to personal independence payment that were included in a consultation document by the Conservative government shortly before July’s general election.

Inclusion Barnet says 14 years of austerity have been “disastrous” for disabled people, while the “skiver versus striver” rhetoric promoted by successive governments has been used to justify cuts to disability support and funding.

It hopes its Campaign for Disability Justice – launched today (Thursday) – will convince disabled people and their allies to sign up as supporters on its new website.

Caroline Collier, Inclusion Barnet’s chief executive, told Disability News Service: “It always astounds me that we are so accepting as a society of disability poverty and bad outcomes for disabled people.”

She pointed to last year’s report by the Joseph Rowntree Foundation that suggested there were more than two million disabled people who experienced destitution in 2022.

She said: “There is a really disproportionate number of disabled people living in deep poverty, and there’s just not enough awareness of the issues.

“It should make the headlines.”

She also highlighted the countless deaths of disabled people linked to the actions of the Department for Work and Pensions.

She said: “People are literally dying and still nothing is done.

“It’s almost like people think that there’s an inevitability: that if you’re disabled, it’s sad, but suffering is inevitable.

“It doesn’t have to be that way at all.”

Collier hopes the new campaign – initially funded from Inclusion Barnet’s reserves – will help change public attitudes towards disabled people, end disablist rhetoric, and help to move towards a society where all disabled people enjoy a decent standard of living.

She also hopes it will help to build a society that “respects and values us”, and also support the development of disabled people’s organisations.

The campaign has already secured backing from disabled people’s organisations, allies and networks such as Inclusion London, Inclusion Scotland, National Survivor User Network, Disability Rights UK and Disability Law Service, as well as Learning Disability England, Turn2us, AdviceUK, Association of Mental Health Providers,  Mencap, The Trussell Trust, Scope, and the National Association for Voluntary and Community Action.

One of Collier’s targets is to find a way with the campaign to move beyond disabled people and allies who are already “converted” to the need for disability justice and “reach the people who might be sympathetic if you talk to them in the right way”.

She added: “Ultimately, the dream is to break the link between disability and poverty. Obviously, that’s a huge goal, but that link should not exist.

“I’d encourage all Disability News Service readers to join the campaign, follow us at @CampaignFDJ, spread the word and help make the case for change.”

12 September 2024

 

 

London Assembly gives unanimous backing to DPO’s call for a disability equality champion for the capital

Members of the London Assembly have unanimously backed a call for the mayor to take a “strategic” approach to improving the lives of disabled Londoners and appoint a new champion for disability equality across the capital.

They voted for a motion that was drawn up by the disabled people’s organisation (DPO) Inclusion London and Liberal Democrat assembly member Hina Bokhari and which received cross-party support.

The motion (PDF) called for the mayor, Sadiq Khan, to ensure that disabled people are involved in co-producing disability-related policy, and to appoint a disability equality champion who would lead the development of a new London Disability Action Plan and on making “London a better place to live for Disabled Londoners”.

Such a plan could cover energy policy, climate change, technology, health, housing, transport, the environment, police and emergency planning.

The motion also confirmed the London Assembly’s support for the social model of disability, which recognises that disability is created by the way society is organised.

Inclusion London welcomed the unanimous support for the motion from London Assembly members, and said disabled Londoners were “tired of empty commitments” and urgently need “real meaningful action”.

It said the mayor needed to appoint a disabled person to coordinate and develop policies that address the barriers faced by the 1.2 million disabled Londoners.

Bokhari had told Thursday’s assembly session: “At a transport committee meeting recently, we heard from charities, advisers and academics that disabled people are often only consulted by decision-makers once policies have already been developed, resulting in policies that discriminate and perpetuate structural inequalities.

“Our proposal would eliminate that problem, develop a model of co-creation of policy with disabled Londoners and their organisations, and the GLA* can and should be trailblazers with policy-making in this way.”

Assembly members also agreed an amendment to the motion, which called on the mayor to order an independent review of the use of floating bus stops in the capital.

Disabled campaigners have warned that floating bus stops (otherwise known as bus stop bypasses) – where a cycle lane is placed between the bus stop and the pavement – put blind and partially-sighted people, and others, at risk of colliding with cyclists when they exit a bus.

Adam Gabsi, Inclusion London’s chair, said disabled people were “tired of empty commitments” and “urgently need a real meaningful action”.

He said disabled people had been one of the groups that were hardest hit by austerity, the Covid pandemic and the cost-of-living crisis, and were disproportionately living in poverty, while public transport, technology, housing, street space, cultural and sports venues and activities “remain inaccessible for many of us”.

He said: “As a disabled Londoner I live those barriers every day, and so do 1.2 million other disabled Londoners.”

Gabsi said: “Meaningful co-production is an essential part of improving the lives of disabled people in London.

“Having a disability equality champion who would be responsible for overseeing the development of the Disability Action Plan would be extremely beneficial in achieving the much-needed necessary improvements.

“We welcome this motion and are grateful to Hina Bokhari for working with us and championing it and to all assembly members for supporting it.

“Now the ball is in the mayor’s corner and we urge him to engage with us, listen to us and to take more strategic and proactive steps to improving our lives.”

A spokesperson for the mayor said in a statement: “The mayor is committed to creating a more equal, accessible and inclusive city, and works closely with Deaf and disabled people’s organisations to ensure that City Hall is considering their needs across all aspects of its work.

“This includes launching the Equity in Motion plan to ensure London’s transport network is welcoming, inclusive and accessible to all Londoners, as well as internal guidance and support for GLA teams to ensure inclusivity.”

He said the mayor had signed the British Sign Language Charter, while his deputy mayor for communities and social justice chaired both a Deaf and disabled people’s organisations forum, and an equality, diversity and inclusion advisory group.

He added: “The mayor will continue to do all he can to support disabled Londoners, and will respond to the assembly’s motion in due course.”

On floating bus stops, another spokesperson for the mayor said they were “in line with government guidance and are a nationally recognised approach for avoiding the dangers of cyclists going around buses into oncoming traffic”.

She said the mayor had asked Transport for London to review their safety, and its report found “very few collisions have occurred at bus stop bypasses and that they have not led to a reduction in bus stop use by older or disabled customers.

“However, we recognise the concerns that some people have when using this infrastructure and we are actively working with disabled people and accessibility groups to look at improvements to design and the behaviour of road users to ensure that this infrastructure is as safe as possible for everyone.”

*Greater London Authority, which is led by the mayor

12 September 2024

 

 

Disabled campaigners call on government to take seven key steps in response to final Grenfell report

Disabled people’s organisations (DPOs) have called on the government to take seven key steps in response to the final report of the Grenfell Tower Inquiry, which they believe would lead to a “sea change” in housing law and policy for disabled residents.

They spoke out after the inquiry told the government last week to take urgent action to prioritise the safety of disabled people and other “vulnerable” residents who live in high-rise residential buildings.

This week’s call came from four DPOs – Inclusion London, Disability Rights UK, Harrow Association of Disabled People and Spinal Injuries Association – and the campaigning disabled people’s leaseholder group Claddag.

The Grenfell Tower fire, which began in the early hours of 14 June 2017, led to the deaths of 72 people, and analysis of the final report suggests about 20 of them were disabled.

The inquiry’s chair, Sir Martin Moore-Bick, has criticised the “persistent failure to give sufficient importance to the demands of fire safety, particularly the safety of vulnerable people”.

The five organisations said this week that disablism and racism were both “strong contributors” to the events that led to the fire, “including the many ways in which the views and complaints of residents were devalued, disregarded and ignored”.

They want the government to implement the inquiry’s recommendation – made nearly five years ago – to impose a duty on owners or managers of high-rise residential buildings to prepare a personal emergency evacuation plan (PEEP) for all residents who might find it difficult to “self-evacuate”.

They welcomed the new government’s apparent commitment to meet this recommendation, which they contrasted with previous Conservative governments that “unforgivably and repeatedly” avoided implementing it.

They also called on the new government to “act immediately” on the report’s recommendation that it should “urgently” review the definition of a “higher-risk building” so that it depends partly on whether there are disabled residents who might find it difficult to evacuate in an emergency, rather than just depending on the building’s height.

The five organisations want the government to extend the PEEPs requirement to all residential buildings covered by the fire safety order, the main piece of legislation governing fire safety in buildings in England and Wales.

And they say the government should implement recommendations in the inquiry report that highlight the importance of taking account of the risks to disabled people, when drawing up a fire safety strategy.

This week’s statement also makes it clear that DPOs should be involved “from the outset” in developing any proposals to improve the safety of disabled residents.

Last week’s inquiry report found that concerns that new fire safety guidance in 2011 did not include advice on evacuating disabled people from high-rise buildings were “simply brushed aside” because the coalition government at the time “considered it too difficult to find a solution to the problem”.

The five organisations say the rights and risks to life of disabled people were dismissed by the government and viewed as “too difficult”, reflecting a “culture of indifference in the years leading up to the fire” which was enabled by “the consistent failure” to involve DPOs, disabled people and specialists when developing proposals.

They called on the new government to “stand against the neglect, indifference, and discrimination of the past” by collaborating with disabled people.

Elspeth Grant, a fire safety and disability specialist, from consultancy Triple A Solutions, who raised concerns about the guidance in 2011, has backed this week’s statement.

The statement also highlights the need for the government to take action on the accessible housing crisis, including the introduction of laws to ensure all new housing is built to the M4(2) standard of accessibility, with 10 per cent built to the wheelchair-accessible M4(3) standard*.

And they say there should be regular, fully accessible consultation with all disabled people living in residential blocks on issues affecting the safety and repair of those buildings.

Their final call is for a legal right to “wrap around support” for disabled residents when the buildings they live in are subject to “disruptive and distressing” building improvements, such as the removal of dangerous cladding.

*Homes built to the M4(2) standard have 16 accessible or adaptable features, similar to the Lifetime Homes standard developed in the early 1990s, to make homes more easily adaptable for lifetime use, while M4(3) homes are those that are supposed to be fully wheelchair-accessible

12 September 2024

 

 

‘Risk of serious harm’ if council goes ahead with telecare charges, say disabled campaigners

Disabled people will be left at risk of serious harm if a council goes ahead with plans to introduce new charges for one of its “vital” care services, a disabled people’s organisation has warned.

Difference North East has told Hartlepool council that it has failed to assess the “full implication and impact” of the planned charges.

They believe many disabled people will be forced to give up the council’s telecare service, even though it keeps them “safe and independent in their own homes”.

The telecare service provides body-worn devices which can trigger a call for help, and other assistive technology such as fire and gas alarms that activate a warning to a response centre in an emergency.

The service is currently available free to disabled people who qualify for support under the Care Act.

But from next month the council plans to bring in charges of between £5 and £12 a week* – up to £624 a year – for the service, plus a one-off charge of about £50 to install a key safe.

The council admitted in a report last year that it believed “some people currently benefitting from the service at no charge will opt out when the charges are introduced”.

Difference North East (DNE) wants the council to scrap the charges, or at least pause them so it can carry out a proper consultation.

It believes the council has carried out “little to no consultation” with existing telecare-users and other local people about the changes.

In an open letter to the council, DNE says: “We are concerned that the full implication and impact of these new charges has not been assessed properly; that local people will be left at risk if they cannot afford, or refuse to pay, these charges. 

“These extra costs mean Disabled people have less money in their pocket than non-disabled people, or they go without.”

The letter adds: “Social care is not a luxury, it is a human right.”

It also calls on the council to learn from the London borough of Hammersmith and Fulham, the only council in England where non-residential care is free.

Claire Andrews, DNE’s development manager, said: “This is not the right time to introduce charges without a full and meaningful consultation and we are worried that the wider impact of this decision has not been assessed properly.

“Local people tell us they cannot afford to pay, they tell us that they plan to unplug the device and go without, leaving themselves at risk of serious harm and that’s not right.

“This runs the risk of creating two-tier care systems; care being offered to those who can afford to pay and denied to those who can’t.

“Disabled people are already facing some of the biggest cuts to their income and this will inevitably put further strain on unpaid carers, local charities and other health and social care services.”

DNE also points to a report from Disability Law Service (DLS), which found that rising home care charges were having a negative effect on the physical, mental and emotional well-being of disabled adults and their family members.

The DLS report also found that “very few” councils were fulfilling their public sector equality duty when imposing charges, for example by failing to assess the costs and benefits of their charging policy; not using discretion in waiving charges; and failing to consult disabled people and disabled people’s organisations.

A Hartlepool Borough Council spokesperson said in a statement: “We welcome the feedback provided by Difference North East and a written response has been provided.

“Unfortunately, it is not possible for the council to continue providing telecare services free of charge due to increasing demands for the service, rising costs of equipment and staffing, and the significant financial pressures all councils are facing.

“The majority of councils in the north-east, and across the country, have already been charging for these services for a number of years.

“We understand that people are concerned about the introduction of charges for telecare services, and in response to the comments we have received from existing service-users we have taken a number of actions to minimise the impact for those affected including introducing a discount for couples, delaying the implementation date and offering support for people to access the benefits they are entitled to.”

*The actual charges are £6 for a basic service or £14.40 for an enhanced service, including VAT, but the council says disabled people are exempt from paying the VAT, so they would pay £5 or £12 per week

12 September 2024

 

 

Commons confirms MPs received DWP ‘violence’ book, as Reeves warns of ‘difficult’ decisions on ‘welfare’

The House of Commons has met its promise to distribute hundreds of copies of a book about Department for Work and Pensions (DWP) “bureaucratic violence” to MPs, just as Labour’s chancellor was warning of difficult decisions on “welfare” in the budget.

Disabled activists raised thousands of pounds to buy 650 discounted copies of The Department through a crowdfunder so the book could be delivered to every MP in the new parliament.

They believe it is vital that all MPs – particularly those on the Labour backbenches – are aware of how decades of “slow bureaucratic violence” by the Department of Social Security, and then DWP, eventually led to countless deaths of disabled benefit claimants in the post-2010 austerity years.

One disabled activist said yesterday (Wednesday) that reading the book would help MPs understand “the human cost of poor policy-making” on social security, particularly for disabled people.

The House of Commons confirmed to Disability News Service this week that the vast majority of the books have been delivered to MPs.

The only books that have not yet been delivered are to those MPs who have asked for their mail to be held back until they have a parliamentary office.

There had been concerns among some disabled people who contributed to the crowdfunder about whether the books would reach MPs.

Activists had been assured weeks in advance – both by the Commons Post Office and its security department – that they would be allowed to bring in the copies through the security scanners at the parliamentary building Portcullis House, but managers refused to allow them to bring in the sealed envelopes, each addressed to an individual MP.

In protest, activists – led by Disabled People Against Cuts and Black Triangle Campaign – used the books to block the public entrance to the building for more than an hour on 2 September.

After negotiations with security and police, Commons managers eventually agreed to collect all 650 copies – without charge – and take them to be scanned by their outsourced security contractors, before delivering them to MPs.

The Commons press office has now confirmed that nearly every envelope has been delivered to MPs, while the remaining handful will receive theirs when they are allocated a parliamentary office.

The confirmation came as chancellor Rachel Reeves told the BBC that next month’s budget would involve “difficult decisions” on tax, spending and social security.

She was speaking as Labour won a vote in the Commons on Tuesday over its plans to start means-testing winter fuel payments for older people, although one Labour MP voted against the plans and more than 50 did not vote.

Reeves told the BBC: “I’ve been really clear that the budget on 30 October will require difficult decisions on tax, on spending, and on welfare.”

The new social security and disability minister, Sir Stephen Timms, has said previously that the Labour government is “committed to reforming or replacing the Work Capability Assessment, alongside putting in place a proper plan to support disabled people into work” and has also said the government “will be considering our own approach to social security in due course”.

The project to raise funds for the books and to deliver them to MPs has been led by disabled activists, including Black Triangle Campaign and the UK Deaf and Disabled People’s Organisations’ Coalition, and supported by disabled people’s organisations, allies and families of those who have lost their lives, as well as Pluto Press, which has published The Department.

John McArdle, co-founder of Black Triangle Campaign, whose idea it was to launch the crowdfunder, thanked the House of Commons for confirming that nearly all of the books have been delivered.

He said: “We hope that these MPs now read this book, learn its lessons, and work to address the awful failures in government policy that it describes, and which led to these tragic deaths in our social security system.

“They must never happen again, and we hope these MPs will ensure that they do not.

“We also hope the government will wake up and realise that cutting the social security budget is not the way to fix the foundations of our country or our economy.”

He added: “We want to thank everyone who donated to our fundraiser, mostly in £5 and £10 donations.

“It was truly a demonstration of people power, people joining together to speak truth to power and demand our human rights be restored and upheld.”

Mark Baggley, manager of Choices and Rights Disability Coalition in Hull, said: “I think it’s vitally important that MPs read their copy of The Department, particularly when looking at the future of welfare benefits.

“I understand that there were over 16,000 responses to the recent consultation over the previous government’s proposals [on personal independence payment] and these will take some time to wade through.

“But I think before any action is taken, the government need to read the book and consult with disabled people before making any changes.”

Disabled campaigner Ben Scott said: “I am relieved that MPs are being made aware of the critical messages in The Department.

“I read the book in one sitting on the day it was published, staying up until 3.40am the following morning.

“As an autistic individual who faced PIP refusals and sanctions three times between 2016 and 2021, I understand all too well the harm caused by bureaucratic failures.

“I won my cases each time, despite struggling with suicidal thoughts, and this is why I became an autism and disability advocate in 2022 and an ambassador for the National Autistic Society (Wales)… to fight for our right to live.

“With Labour set to propose their own disability benefit reforms, it’s more important than ever that MPs understand the human cost of poor policy-making.

“By reading this book, they could help ensure future reforms prioritise dignity, rights, and well-being for disabled people.

“We cannot afford another system that harms us instead of offering the support we desperately need.”

James Kelly, publicity and social media manager for Pluto Press, said: “We welcome the news that copies of The Department have been successfully delivered to members of parliament.

“Activists have been working around the clock to make sure that their voices are heard.

“We hope that MPs take this opportunity to engage with the material and the reality of human suffering that’s driven by austerity.”

Among the organisations that have supported the campaign are Disabled People Against Cuts, Greater Manchester Coalition of Disabled People, Inclusion London, Disability Rights UK, Recovery in the Bin and the radical working-class media organisation The Canary.

The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by DNS editor John Pring, was published by Pluto Press last month

12 September 2024

 

 

Other disability-related stories covered by mainstream media this week

The chair of an inquiry into more than 2,000 mental health-related deaths has said “we may never know” the true number of people who died. The Lampard Inquiry has got under way, examining deaths at NHS-run children and adult inpatient units in Essex between 2000 and 2023. Baroness Lampard, who is leading proceedings, said the inquiry was “of the gravest concern and significance”. She warned the number of deaths was expected to be “significantly in excess” of the 2,000 figure previously reported: https://www.bbc.co.uk/news/articles/c15gjpde7q4o

Britain’s Paralympians have called on prime minister Keir Starmer to ensure disabled children have equal access to school sport. As the British team returned from the Paralympics in Paris – having finished second in the medal table behind China, with 124 medals, including 49 golds – an open letter from ParalympicsGB to the government said only one in four disabled children regularly takes part in school sport. Its Equal Play campaign calls on the government to ensure “every child has the same access to PE at school, rather than leaving them sidelined”: https://www.bbc.co.uk/sport/articles/c07e3520nvko

There are no quick fixes to problems faced by families with children with special educational needs and disabilities, the schools minister has said. Catherine McKinnell said the government was determined to reform the special educational needs system. Some children are waiting years to find out if they qualify for support from councils, which are struggling to meet demand. MPs called for urgent action to help families, in a packed-out debate in parliament last Thursday: https://www.bbc.co.uk/news/articles/c9wj011wd57o

Hundreds of children with special educational needs (SEN) are completely missing from education in England, analysis suggests. Children with SEN make up 22 per cent of the 2,900 children not enrolled at a school or being suitably educated elsewhere – which is disproportionately high, the report says. Children’s commissioner Dame Rachel de Souza said provision for children with SEN was “the number one thing that needs sorting out alongside attendance to make sure our kids can go to school”. The Department for Education said the report showed “far too many children falling through the cracks”: https://www.bbc.co.uk/news/articles/c9qg94d45zxo

A man with learning difficulties who was jailed for life in 1991 for the murder of a shopkeeper in London has had his conviction quashed by the Court of Appeal. Oliver Campbell spent 11 years in prison for murder and robbery following a fatal shooting at an off-licence in Hackney that killed Baldev Hoondle in July 1990. He was 21 when convicted by an Old Bailey jury, despite evidence that another man had been named as the gunman: https://www.independent.co.uk/news/uk/crime/oliver-campbell-murder-appeal-conviction-overturned-b2610799.html

An app that immediately translates train announcements into British Sign Language has been launched. South Western Railway is trialling Signapse, which uses AI generated images to deliver information to Deaf passengers. The trial is currently running on services between Basingstoke, London, Salisbury and Exeter, with hopes to extend the initiative. Developers hope the app will make train journeys less stressful and plan to introduce the app in all public places: https://www.bbc.co.uk/news/articles/c0qej3qe2k3o

A disabled activist was prevented from boarding a Eurostar service to London because she had not booked a ramp – even though her ticket was for a wheelchair space. Sam Jennings, who uses an electric wheelchair, said staff at Gare du Nord station in Paris had “watched me queue to check in, then turned me round when I got to the front and sent me away to the office” to book a ramp. After she tweeted Eurostar on X/Twitter, a ramp was eventually provided, but she said the incident had been “infuriating” and had added to a stressful trip to the Paralympics: https://www.bbc.co.uk/news/articles/cz73xy4djvno

12 September 2024

 

News provided by John Pring at www.disabilitynewsservice.com

 

Contents

Grenfell: Inquiry calls for urgent action to prioritise safety of disabled residents of high-rise flats 1

Grenfell: Housing managers repeatedly rejected calls to improve safety of disabled residents 3

Labour’s decision to drop Tory DWP appeal reveals impact of scrapping ‘fitness for work’ test 5

Disabled activists and allies defy bureaucrats to ensure delivery of 650 copies of ‘DWP violence’ book to MPs 6

Ofsted’s plans to reform inspections ‘will continue to enable discrimination’ 10

‘Eye-opening’ report calls for action on ‘inconsistent and unpredictable’ bus services for disabled passengers 13

Other disability-related stories covered by mainstream media this week 15

 

Grenfell: Inquiry calls for urgent action to prioritise safety of disabled residents of high-rise flats

The final report of the Grenfell Tower Inquiry has told the government to take urgent action to prioritise the safety of disabled people and other “vulnerable” residents who live in high-rise residential buildings.

The 1,700-page report was published yesterday (Wednesday) and made a series of recommendations to improve the protection of disabled residents, following years of “persistent indifference” among those responsible for their safety at Grenfell Tower.

The report found that “matters affecting the safety of life were ignored, delayed or disregarded” by the Conservative-led government in the years after the Lakanal House fire in 2009, due to a “deregulatory agenda” which was “enthusiastically supported” by ministers.

Concerns that new fire safety guidance did not include advice on evacuating disabled people from high-rise buildings were “simply brushed aside”, the report says, because the coalition government at the time “considered it too difficult to find a solution to the problem”.

The Grenfell Tower fire, which began in the early hours of 14 June 2017, led to the deaths of 72 people, and initial analysis of the final report suggests about 20 of them were disabled.

The inquiry’s chair, Sir Martin Moore-Bick, said the deaths “were all avoidable and that those who lived in the tower were badly failed over a number of years and in a number of different ways by those who were responsible for ensuring the safety of the building and its occupants”.

Those who failed them included successive governments, Kensington and Chelsea Tenant Management Organisation (KCTMO) – which took over management of Kensington and Chelsea council’s housing in 1995 – the council, London Fire Brigade, the construction industry, and a string of companies involved in a refurbishment of Grenfell Tower before the fire.

Sir Martin criticised the “persistent failure to give sufficient importance to the demands of fire safety, particularly the safety of vulnerable people”.

He said KCTMO had “failed to maintain a reasonably accurate record of those residents of the tower who were vulnerable for one reason or another and likely to need help to escape if a fire occurred” (see separate story).

The report’s summary says the council and KCTMO were jointly responsible for the management of fire safety at Grenfell Tower, and the years between 2009 and 2017 “were marked by a persistent indifference to fire safety, particularly the safety of vulnerable people”.

Among the report’s recommendations, it says the definition of a “higher-risk building” should be reviewed “urgently” so it depends partly on whether there are disabled residents who might find it difficult to evacuate in an emergency, rather than just depending on the building’s height.

Guidance on preparing for emergencies should place greater emphasis on the need to identify “vulnerable” people and be consistent with the Equality Act, it says.

The report also recommends a change to guidance around the “stay put” policy – where residents are advised to stay in their flat if there is a fire in another flat in the building, as long as the heat or smoke is not affecting them – so it includes the need for an evaluation of the time disabled residents need to evacuate from a building.

And it repeats recommendations from the inquiry’s first report, in 2019, that owners and managers of high-rise residential buildings should be legally required to prepare a personal emergency evacuation plan (PEEP) for all residents who may find it difficult to “self-evacuate”, and to include current information about those residents and their PEEPs in an information box that can be accessed by firefighters.

The inquiry calls for “further consideration” of the PEEPs recommendations by the government.

The new Labour government appears to have accepted at least part of these recommendations, as it had already announced it would bring forward proposals relating to PEEPs this autumn to “improve the fire safety and evacuation of disabled/vulnerable residents in high-rise and higher-risk residential buildings in England”.

Rushanara Ali, the junior minister for building safety and homelessness, said disabled people would be entitled to “a person-centred risk assessment to identify appropriate equipment and adjustments to aid their fire safety/evacuation, as well as a ‘Residential PEEPs statement’ that records what vulnerable residents should do in the event of a fire”.

She said the government would provide funding next year for social housing providers “to begin this important work”.

5 September 2024

 

 

Grenfell: Housing managers repeatedly rejected calls to improve safety of disabled residents

The Grenfell Tower Inquiry’s final report has revealed how opportunities to produce evacuation plans for disabled residents of Grenfell – and other high-rise buildings in the same London borough – were repeatedly rejected by those responsible for their safety.

The report was published yesterday (Wednesday), with the inquiry’s chair, Sir Martin Moore-Bick, describing “a persistent failure to give sufficient importance to the demands of fire safety, particularly the safety of vulnerable people”.

The fire, in the early hours of 14 June 2017, led to the deaths of 72 people, and analysis of the final report suggests about 20 of those who died were disabled.

The report – which reaches nearly 1,700 pages, across seven volumes – raises repeated concerns in volumes one and three about the failure to protect disabled people and others who were particularly vulnerable in such emergencies.

Evidence in volume three of the report provides repeated evidence of how Kensington and Chelsea Tenant Management Organisation (KCTMO) – which took over management of Kensington and Chelsea council’s housing in 1995 – repeatedly failed to ensure the safety of its disabled tenants.

It also details how Kensington and Chelsea council failed to ensure those duties were carried out.

It describes how Robert Black, KCTMO’s chief executive, misled the council’s executive director of housing in 2010 about plans to produce personal emergency evacuation plans (PEEPs) for disabled tenants.

He told her that KCTMO intended to produce PEEPs for its disabled residents, but only two were ever prepared between 2010 and 2017, and neither of those residents lived in Grenfell Tower.

The following year, in 2011, Janice Wray, KCTMO’s head of health and safety, “gave similar assurances that the TMO* intended to identify vulnerable and disabled residents who required PEEPs”.

But the council failed to check on whether those PEEPs were completed. It later admitted to the inquiry that this had been “a failure of oversight on its part”, says the report.

London Fire Brigade (LFB) also asked KCTMO to prepare a list of vulnerable residents that could be easily accessed in an emergency.

But, the report says, KCTMO “did not create a system to collect information about residents with additional needs that could be made available to the LFB in the event of a fire”.

At one point in 2012, Carl Stokes, a former firefighter turned fire safety consultant who had been appointed as KCTMO’s fire risk assessor, advised Wray to lie to LFB and tell them she was not aware of any vulnerable people who might be suitable for a fire brigade initiative to install sprinklers.

The report says: “He did so in order to avoid any questions being asked about why anyone who might qualify had not been identified in the fire risk assessments or received a PEEP.”

It adds: “The truth is that he knew that PEEPs were required for vulnerable residents, that the TMO had produced only two, and that his fire risk assessments had not recommended any additional fire safety measures for vulnerable people.

“His advice amounted to a suggestion that she should lie to the LFB.”

The report says that neither Stokes nor Wray were “able to provide a clear explanation for their failure to ascertain the number of vulnerable people” living in KCTMO properties.

And it concludes that “the fire risk assessments carried out by Mr Stokes that we examined, including those relating to Grenfell Tower, were inaccurate and out of date in relation to the presence of vulnerable persons”.

The report also reveals that KCTMO’s fire safety strategy made provision for PEEPs for its own disabled staff members but “contained no reference to PEEPs for vulnerable residents”.

And it says that no disabled residents were ever told that they could ask to be assessed for a PEEP “and the possibility was not drawn to their attention in any of the literature they were given”.

The report concludes that the Grenfell Tower fire “revealed the importance of ensuring that the responsible person collects sufficient information about any vulnerable occupants to enable PEEPs to be prepared, when appropriate, and, in the event of a fire, appropriate measures to be taken to assist their escape (see separate story).

“The TMO’s failure to collect such information illustrates a basic neglect of its obligations in relation to fire safety.”

*Tenant management organisation

5 September 2024

 

 

Labour’s decision to drop Tory DWP appeal reveals impact of scrapping ‘fitness for work’ test

People with mental distress are “significantly more likely” to be affected by plans to scrap the work capability assessment than claimants with physical impairments, documents released after a freedom of information battle have revealed.

The Department for Work and Pensions (DWP) has abandoned plans by the last Conservative government to fight an order to release a draft equality impact assessment (EIA) of the proposals, in the first tentative sign of increased transparency from a Labour-run DWP.

The information rights tribunal had been due to hear DWP’s appeal against a ruling by the information commissioner that it should release to Disability News Service (DNS) the draft EIA, and a draft “costing note” which detailed early estimates of how much the Conservative government hoped to save through its plans.

The hearing had been due to take place on Monday (9 September), but DWP decided that it would now release the two documents, “due to the passage of time”.

Under plans outlined by the last Conservative government to scrap the work capability assessment (WCA) – which the new government has yet to abandon – the extra payment for those currently assessed as having limited capability for work and work-related activity (LCWRA) would be awarded instead to anyone who receives both universal credit and personal independence payment (PIP).

This would mean eligibility for the new “health element” of universal credit being decided through the much-criticised PIP assessment.

Those found not eligible for PIP would not receive the health element.

DWP has claimed that those who saw their benefits cut would receive “transitional protection”, but this would be eaten away over time by inflation, and would not apply to new claimants, who would lose out on nearly £400 a month at current benefit rates.

Disabled activists have previously said the “heartless” reforms – the centrepiece of the last government’s Transforming Support white paper – “defy logic” and pose significant risks to sick and disabled people who cannot work.

One concern is that life-changing decisions on whether a disabled person must carry out work-related activity would be taken by jobcentre work coaches, who would almost certainly have no healthcare-related qualifications.

Another of the key concerns, which is confirmed by the EIA now released by DWP, is that scrapping the WCA would also remove regulations 29 and 35 (and its universal credit equivalents).

These regulations provide a vital safety net that protects those who face a “substantial risk” of harm if found “fit for work” or able to carry out work-related activity.

Although ministers have weakened regulations 29 and 35 over the years, they are still believed to have saved countless lives by allowing such claimants to be found eligible for employment and support allowance (ESA) and its universal credit equivalent, even if they fail to reach the necessary number of points through a WCA.

But the draft EIA warns that “men are more likely to be impacted by the change than women, older people are more likely to be impacted than younger people and, because of the exclusion of the ‘risk’ group… claimants with mental health impairments are significantly more likely to be impacted than claimants with physical health impairments”.

It admits that DWP would “need a robust justification to exclude the ‘risk’ group from the new top up and we may need to offer concessions as the Bill goes through Parliament”.

It also claims that the government would mitigate this impact on claimants at risk of harm from being found fit for work or work-related activity “through better access to mental health services and improved employment support, and by the application of conditionality appropriate to their circumstances”.

This “application of conditionality” would be decided by unqualified work coaches who could potentially not even have a single GCSE.

The draft costing note, which is likely to be out-of-date now because of further decisions taken under the last government, suggests that scrapping the WCA would save about £23 million in 2026-27 and £82 million in 2027-28.

DWP has told DNS that the information it has finally released was developed for the previous government at a specific point in time, and was only drawn up for internal policy development.

DWP is still fighting the release of other internal documents, including a secret report that describes the impact of its errors on “vulnerable” benefit claimants, which it admits could have a “negative” impact on its reputation if it was released; and information that would show how many secret internal process reviews were carried out into the deaths of universal credit claimants over the last four years of a Conservative-run DWP.

5 September 2024

 

 

Disabled activists and allies defy bureaucrats to ensure delivery of 650 copies of ‘DWP violence’ book to MPs

Disabled activists and allies used negotiation and peaceful direct action to ensure that hundreds of copies of a book about decades of Department for Work and Pensions (DWP) “bureaucratic violence” will reach MPs this week.

Their action ensured that every MP will receive a copy of The Department, which details how DWP’s actions eventually led to the deaths of hundreds, if not thousands, of disabled people in the post-2010 austerity years.

The project was crowdfunded by nearly 350 supporters, who raised almost £7,300.

After meeting outside DWP’s Caxton House offices on Monday, activists – including relatives of two of the disabled benefit claimants who died – carried all 650 copies across Westminster to Portcullis House, where many MPs and the House of Commons Post Office are based.

Although they had been assured weeks in advance – both by the Post Office and Commons security – that they would be allowed to bring in the copies through the security scanners at Portcullis House, managers refused to allow them to bring in the sealed envelopes, each addressed to an individual MP.

In protest, activists – led by Disabled People Against Cuts and Black Triangle – used the books to block the public entrance to the building for more than an hour.

After negotiations with security and police, House of Commons managers eventually agreed to collect all 650 copies – without charge – and take them to be scanned by their outsourced security contractors, before delivering them to MPs.

Among those who supported the event were Gill Thompson – whose brother David Clapson died in July 2013, three weeks after having his jobseeker’s allowance sanctioned – and her husband Mike.

She said the crowdfunding and action had been “quite an achievement”.

She said: “We have had our obstacles, but we got there in the end.

“That book has given me David back, it’s put him in a human light and given him back his dignity that [DWP] took away from him.”

Another supporting the action was Joy Dove, whose daughter Jodey Whiting took her own life in February 2017, 15 days after she had her out-of-work disability benefits wrongly stopped for missing a work capability assessment.

She said: “These MPs need to see the stories in the book, how each and every family has suffered the life-changing loss of a loved one.

“There needs to be change now there’s a new Labour government.”

She said she was encouraged that her new Labour MP, Chris McDonald, asked to meet her outside Portcullis House, and supported her campaign for justice.

Jodey’s daughter Emma also travelled to London to support her at the action.

She told Disability News Service (DNS) afterwards: “It massively opened my eyes speaking to different people who have also lost their family members.

“I feel like the MPs should read the book as it’s not just my mam’s story.

“There are there so many families in the book and over a decade of evidence is not something to be ignored.

“It was an amazing day, and it made me want to join another and fight more with my amazing nana Joy.”

Among disabled activists who helped take copies of the book – written by DNS editor John Pring – to Portcullis House were actors Cherylee Houston and Lisa Hammond.

Asked why it was important for MPs to read the book, Hammond said: “How do you ever learn anything if you don’t learn from what’s happened before?

“The DWP has been a disaster and absolutely devastating. If the MPs don’t know what has happened historically, how can they work to change what is about to come?”

She said she had enjoyed being part of the protest with other members of her disabled community.

She said it was “important to turn up and have peaceful protests” as “so many of us cannot fight financially, physically or [because of their] mental health”.

Houston, who travelled from Manchester to attend the event, said she was “very glad” to be helping to defend her community by taking part in the protest.

She said delivering the book to MPs was important “so they can see the lived experience of disabled people, what benefits mean to people and what benefit cuts mean to people and what that is in true life experiences”.

She said: “There are so many I know who are on their knees already. How the hell can you put any more pressure on them?”

Asked for her message to the Labour MPs who might now be able to influence the government’s future social security reforms, Houston said: “Talk to us and find out what you need to reinstate. Please don’t cut anything else.”

Another disabled activist who helped take the books to Portcullis House was Carole Vincent, who for 10 years has been part of a group of volunteers who help claimants fill in their benefit forms.

She said: “Delivering the books is essential because there has been an absolute failure by the previous governments to acknowledge that we have a broken system.

“It’s essential reading for them because people have died because the system doesn’t work.

“They need to fix it properly.”

Another disabled activist, Jenny, said it was important that MPs read the book.

She added: “I wanted to be here as part of the fightback – anything that will get the issue out to the public.”

The project has been led by disabled activists, including Black Triangle Campaign and the UK Deaf and Disabled People’s Organisations’ Coalition, and supported by disabled people’s organisations, allies and families of those who have lost their lives, as well as Pluto Press, which has published The Department.

Among the organisations supporting the campaign are Disabled People Against Cuts, Greater Manchester Coalition of Disabled People, Inclusion London, Disability Rights UK, Recovery in the Bin and the radical working-class media organisation The Canary.

John McArdle, co-founder of Black Triangle Campaign, whose idea it was to launch the crowdfunder, said: “The Department provides a casebook of how not to run a social security system.

“The current disability benefit assessment system is making people even sicker.

“Pushing disabled people into work that medical experts say we cannot do won’t address labour shortages and more disability benefit cuts, as the government has planned, are not a common-sense strategy for ‘fixing the foundations’.

“Long term-costs to the economy increase exponentially by failing to provide a stitch in time and save lives.

“There are alternative fiscal policies that could be adopted which won’t lead to more DWP-created avoidable harm and death.

“Instead, Deaf and disabled people and our organisations call upon the government to sit down with us to co-produce a safe and efficient disability benefit system that provides a genuine safety net to those who need it.”

Author and activist Ellen Clifford, from the UK Deaf and Disabled People’s Organisations’ Coalition, who has helped lead the project, said: “The success of the crowdfunder shows how important it is to people outside the Westminster bubble that our elected politicians finally address the grave injustice of DWP attacks on Deaf and disabled people.

“Across the UK, there is growing concern about the impact of yet more cuts.

“It is apparent that lessons from the past are being deliberately ignored.”

Veruschka Selbach, managing director of Pluto Press, said: “We are very proud to be publishing John’s book.

“It is an exceptional work of investigative journalism that is both heart-breaking and shocking.

“We are also extremely honoured to be participating in this action to ensure that all MPs get a copy of the book. These stories can’t be ignored any longer.”

In a covering letter to MPs sent with the books, McArdle and Clifford say: “It is certain that the new government will be announcing reforms to personal independence payment, benefit sanctions, universal credit and the work capability assessment in the coming months.

“All these areas of DWP policy have been strongly linked to tragic deaths of claimants over the last 15 years, and we believe this will continue to happen if the government does not take the necessary steps to build a new, safer culture within DWP.

“All we ask is that you read this book before deciding your position.”

The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by DNS editor John Pring, was published by Pluto Press last month

5 September 2024

 

 

Ofsted’s plans to reform inspections ‘will continue to enable discrimination’

Disabled campaigners have raised serious concerns about plans by the education watchdog to reform the way it inspects and assesses schools.

Ofsted promised this week to place more “focus and scrutiny” on how schools in England meet the needs of disabled children, following a public consultation that was heavily critical of its current approach.

But although The Alliance for Inclusive Education yesterday (Wednesday) welcomed the proposed changes to the inspection system, it also said Ofsted needed to do far more to address the systemic discrimination faced by disabled children and young people.

It warned that the changes proposed by Ofsted would allow the education system to “continue to enable discriminatory practices that allow schools to exclude disabled children and young people, rather than taking meaningful action to support their inclusion”. 

The largest consultation in the education watchdog’s history resulted in widespread criticism of its failure to hold schools and other education and skills providers to account for the quality of their special educational needs and disability (SEND) provision.

Only about half of respondents agreed that Ofsted currently holds providers to account on SEND provision.

Parents said its inspections do not scrutinise SEND closely enough, and that schools that were failing children with SEND should be rated as failing overall.

Ofsted is the Office for Standards in Education, Children’s Services and Skills, and it inspects services that provide education and skills for learners of all ages in England, as well as inspecting and regulating services that care for children and learners.

In its report on the consultation, Ofsted said respondents had called for schools to be praised for “inclusivity” and for measuring disabled children’s progress based on their individual starting points “rather than solely on their academic outcomes”.

Ofsted’s reports on schools should show how they ensure disabled pupils and others with SEND are included in all aspects of school life, the regulator was told.

Nearly three-fifths of respondents (58 per cent) believed that mainstream schools suspend, off-roll or place off-site pupils with SEND as an “unintended consequence” of Ofsted inspections.

Ofsted describes off-rolling as removing a child from a school’s list of pupils without permanently excluding them, “when the removal is primarily in the best interests of the school, rather than in the best interests of the pupil”.

This includes pressuring a parent to remove their child from a school.

Respondents also called on Ofsted to improve how it engages with disabled pupils, their parents and school staff, and to produce more “nuanced and detailed” evaluations of SEND provision.

And they described the current inspection system as “overly politicised, outdated, and ineffective in addressing the needs of children and learners with SEND”.

Many of those who took part in the consultation called on Ofsted to consider the impact of funding restrictions on the availability and quality of specialist support staff, and the level of support and services provided by local authorities.

As a response to the consultation, Ofsted promised to introduce a “report card” from next September that would provide a “more nuanced and detailed” assessment of how schools and other providers are performing.

Education secretary Bridget Phillipson announced this week that the current single-word headline grade for schools will be removed from inspections from this month.

As part of these changes, Ofsted will consult early next year on its new “specific focus” on inclusion in report cards.

It promised to put disabled children and others with special educational needs (SEN) and from disadvantaged backgrounds at “the heart” of its reforms.

But ALLFIE’s chair, Navin Kikabhai, said it was about time Ofsted “seriously engaged” with disabled children and young people and recognised their diversity, and framed their mainstream experiences “within a context of rights and entitlements to inclusive education”.

He also called on Ofsted to introduce measures that would assess its own policies, culture, practices and staff diversity. 

He said: “For far too long, disabled children and young people and individuals labelled as having SEN have been framed within a deficit-needs-based system that has all too often led to their systematic exclusion into segregated provision.

“We remain deeply concerned about the harmful approach that persists.

“This is an education system rooted in grouping and ranking children which perpetuates societal inequalities and discrimination.”

He also said ALLFIE was disappointed that Ofsted and the Department for Education had not worked with disabled people’s organisations to develop a system “rooted in the foundation of inclusive education as defined by the UN Convention on the Rights of Persons with Disabilities (UNCRPD)”.

He said: “This was a missed opportunity to deliver on the government’s obligation under the UNCRPD to progressively realise the right of disabled people to mainstream education as a human right.”

ALLFIE’s goal of creating an inclusive and equitable educational system for every child is outlined in its Inclusive Education for All manifesto. 

Ofsted received more than 20,000 responses to its open online consultation, including more than 4,000 from children, while independent researchers commissioned by Ofsted surveyed another 8,000 parents and members of the public, and more than 7,000 professionals working across education and children’s social care.

Ofsted admitted that last year’s death of head teacher Ruth Perry – who took her own life after learning her primary school was to be branded “inadequate” by Ofsted – was the “catalyst” for the changes.

Sir Martyn Oliver, Ofsted’s chief inspector, said: “This is the beginning of a new chapter for Ofsted as we reset our priorities, refine our practices and rebuild our relationships.

“We want to retain the confidence of the children, parents and carers we work for, and regain the respect of the committed professionals we work with.

“The tragic death of Ruth Perry was a catalyst for this change, but the case for change has been building for years.

“We recognise the growing challenges facing education and social care, particularly since the pandemic. We don’t want to add to this pressure.

“Many of the changes we are introducing are aimed at reducing the pressure on those we inspect.”

5 September 2024

 

 

‘Eye-opening’ report calls for action on ‘inconsistent and unpredictable’ bus services for disabled passengers

An “eye-opening” report has called for action to address the “inconsistent, unpredictable and sometimes inaccessible services” that disabled bus passengers have to put up with.

The report is based on research that aimed to understand the main challenges faced by different groups of disabled bus passengers, and how they could be addressed.

The report, by the campaigning charity Bus Users UK, details the experiences of 32 disabled bus passengers across England, Scotland and Wales.

Each of them documented their bus journeys in a two-week diary, while they also took part in interviews with researchers.

The report, Why Are We Waiting?, describes barriers relating to inaccessible bus stops; the design of buses; the attitudes of bus drivers and fellow passengers; and timetables and other audio and visual information.

Among particular barriers the passengers have faced are a lack of seating or shelter at bus stops; obstacles such as high kerbs and bins around bus stops; wheelchair spaces that face away from live information displays; and outdated timetable information.

Data collected by Bus Users UK shows that 4.5 per cent of all bus complaints in 2022-23 were related to disability or accessibility.

One of the disabled passengers who took part in the research, Clara*, described how standing for longer than five minutes means she can feel too tired to complete the rest of her journey.

She told researchers: “If there’s a seat at that stop, I’d probably sit down and stay – if the next one was due in 10 minutes, I’d wait… but if there was no seat and it wasn’t due quite quickly, I’m going home and that’s it, I’m done.

“If I’m going for an appointment, I’m cancelling it. If I was due somewhere, I’ll send my apologies.”

Most of the wheelchair-users who took part said they had been in situations where people with pushchairs or buggies would not willingly give up the space on a bus assigned for wheelchair-users.

Many of those who took part in the research said they had had negative experiences with bus drivers, often because of communication problems.

Katya, from Southport, told the researchers she had regularly tried to take the bus but stopped because drivers would make excuses for refusing to let her on board in her powered wheelchair.

She said: “They’d say that I had to have insurance to be in a wheelchair and that I had to be on the road.

“They would say their ramp wasn’t working. They would say there was a pram in the space so I couldn’t get on, all of that.

“And it just became that you couldn’t go anywhere.”

Grant, from Wales, said he was worried about the “floating” bus stops that have been introduced locally.

He is visually-impaired and said the design – where a cycle lane is placed between the bus stop and the pavement – puts people at risk of colliding with cyclists when they exit the bus.

Many of those who took part said audio and visual information on buses tended to be ineffective because of malfunctions, displaying the wrong information, or because it was hard to view for those in the priority and wheelchair spaces.

Ruth, who has a physical impairment, said the unreliability of buses meant she could no longer rely on them for important events such as hospital appointments, so she had to spend more money on taxis.

The report concludes: “Efforts to improve accessibility and inclusion have had to balance the needs of passengers with the demands on operators to deliver commercially viable services.

“The result for disabled passengers has been inconsistent, unpredictable and sometimes inaccessible services as operators and local authorities have at times had to make the difficult decision to run sub-standard services over no service at all.

“This needs to change.”

Among its recommendations, the report calls for collaboration between government, the transport industry, local authorities and disabled people.

But it also calls for the government to set stricter standards, provide greater clarity around existing legislation, and increase funding.

And – among other recommendations – it says local authorities should improve infrastructure and consultation with disabled people, while bus operators should improve engagement and collaboration with disabled bus passengers and staff training.

Claire Walters, chief executive of Bus Users UK, said that, despite recent advances in legislation, staff training and vehicle design, “buses are still far from fully accessible and this research highlights, in their own words, the many challenges facing disabled passengers”.

She said the report demonstrated the importance of the industry working with disabled passengers to overcome the barriers they face.

She said: “What we need now is a sustained commitment, collaboration, and funding to ensure that bus travel offers a genuinely reliable, accessible and environmentally-friendly option for everyone.”

Motability Foundation, which funded the research, described the report as “eye-opening”.

Stephen Brookes, transport policy adviser for Disability Rights UK, welcomed the report, and said: “We are pleased to collaborate with Bus Users UK and in our work we agree with and reinforce the simple but critical fact that it is vital to involve disabled people in the design and procurement stages of bus and service design to try to ensure consistent bus designs across different regions, which otherwise hinders accessibility and independence.”

*The names of passengers who took part in the research are all pseudonyms

5 September 2024

 

 

Other disability-related stories covered by mainstream media this week

A vital lifeline for struggling families has been extended until next April. There was growing alarm over whether the Household Support Fund, which was set to end on September 30, would continue. But now the government has confirmed it won’t be scrapped. The fund allows local authorities to distribute cash to those struggling with the cost of energy, food and water. Ministers announced a £421 million extension in England, with a further £79 million for devolved administrations in Scotland, Wales and Northern Ireland: https://www.mirror.co.uk/news/politics/breaking-vital-household-support-fund-33582232

Almost half of people on universal credit ran out of food in the last month and didn’t have money to buy more, a report has found. The Trussell Trust also found nearly seven in 10 working people receiving the benefit had gone without essentials in the last six months. It estimates that 1.6 million people who claim universal credit have used food banks in the past year, as it warned of a “crisis of hardship” across the UK: https://www.mirror.co.uk/news/politics/bombshell-universal-credit-survey-finds-33582007

Firefighter, disability and Grenfell groups have criticised the existence of a “dangerous postcode lottery” as data revealed an “inconsistent rollout” of emergency evacuation plans for vulnerable people across London. The Guardian submitted freedom of information requests to all London councils on how many personal emergency evacuation plans (PEEPs) had been issued since 2017. Of the 33 London councils, 29 responded. The data found five London councils – Hounslow, Islington, Lewisham, Hackney and Tower Hamlets – had not issued any PEEPs: https://www.theguardian.com/society/article/2024/sep/01/evacuation-plans-vulnerable-london-dangerous-postcode-lottery-grenfell

5 September 2024

 

News provided by John Pring at www.disabilitynewsservice.com

 

Urgent! 

The Government’s decision to take the Winter Fuel Allowance from pensioners who are not in receipt of Pension Credit (or some other means tested allowance) will have a terrible effect on all pensioners who have depended on it in the past to heat their homes during winter. But it would be especially disastrous for disabled pensioners who are often struggling to make ends meet even during the summer.

Excess winter deaths due to living in cold homes in 2023 were 4,950 (ONS stats for England and Wales). That’s 4,950 older and disabled people who should never have died.

Meanwhile MPs between 2018 and 2023 claimed over £1 million for heating their second homes.

https://www.opendemocracy.net/en/dark-money-investigations/parliament-mps-claim-expenses-on-energy-bills-for-second-homes/

Although Poor Rachel Reeves who is happy for older people to freeze to death only claimed £1,296 for accommodation fuel costs

https://www.reuters.com/fact-check/uks-reeves-does-not-have-3400-pound-heating-allowance-contrary-online-claims-2024-08-06/

Please ask your MP to vote against this decision on Tuesday 10th of September. This means there are only a few days left, so please contact your MP urgently.

We need you to contact your MP and ask them to attend this meeting.

If you are not sure who your MP is, you can find them by putting your postcode in the They Work for You website

Link here
https://www.theyworkforyou.com/mp/

Please send them an email now.

In response to Liz Kendall’s article, highlighting the blame culture, led by the previous work and pension secretaries, it’s notable she is still using the term “economically inactive” which is both degrading and problematic.

The call to action is to gather information and present it to government to highlight the need for better support for disabled people both working and those who would like to.

To anyone looking from the outside in, we are just lazy and don’t want to help ourselves.

Therefore, I would like to collaborate with disabled people to create a CV, not a full CV just an honest paragraph of how your illness affects you and the adjustments that would need to be put in place for you to enter the workplace.

If you are currently utilising Access to Work or are waiting for Access to work, what adjustments has your employer been prepared to put in place for you.

Consider how your illness affects you, how you do, or would manage appointments or sick leave. Is there a disciplinary process this falls under.

I also encourage you to provide feedback on the support you currently experience from employers and colleagues.

You must be brutally honest as there are so many things they won’t have dreamt of, that are stopping us.
 www.acccessiblerach.co.uk

Any details you provide will be anonymous and shared on www.acccessiblerach.co.uk and my various social media channels incl YouTube and my Podcast.

I hope that this collaboration will lead to meaningful change and better support for disabled people to either enter the workplace or stay in the workplace.

Thank in anticipation and I look forward to receiving your responses email:

 

Rachael
Accessible Rach
X.com

Instagram

TikTok

 

22nd August

Contents

House of Commons has many more disabled MPs than previously thought, ‘heartening’ new figures show 1

Labour fails another transparency test, as DWP appeals order to release information on universal credit deaths 3

Crowdfunder’s final push could see book on ‘violent’ DWP sent to politicians across the country 5

Government ordered to release redacted parts of document on power cuts and disabled people 7

National network will provide new voice for disabled people battling councils over social care 9

Retired Paralympian calls for multi-billion Motability reserves to fund more grants for high-cost vehicles 11

Other disability-related stories covered by mainstream media this week 14

 

House of Commons has many more disabled MPs than previously thought, ‘heartening’ new figures show

“Positive” new figures show there are far more disabled MPs in the House of Commons than previously thought, and possibly as many as 40.

Even after the addition of at least three new disabled MPs after July’s general election – Labour’s Dr Marie Tidball and Jen Craft, and Liberal Democrat Steve Darling – it was thought there was still only a handful.

Disability News Service (DNS) estimated last month that there were about nine MPs who identify as disabled people, compared to possibly as few as five in the last parliament.

But figures obtained this week under the Freedom of Information Act by Disability News Service (DNS) show there are far more than that in the new parliament.

They show that 43 out of a total of 650 MPs had discussed the possibility of having disability-related adjustments made for them, after every MP was approached with an offer of support by House of Commons authorities when they were elected in July.

The figures show that, by 14 July, in response to this approach, 43 MPs had said they would like to discuss workplace adjustments.  

Of those 43, 28 subsequently had workplace adjustments agreed, although five said they no longer required any support.

The other 10 had been contacted and provided with information by the House of Commons team, although adjustments had not been agreed by 14 July.

Although not all of those who have requested adjustments will self-describe as a disabled person, the figures show a huge increase on the seven MPs who had workplace adjustments agreed in the last parliament.

Among the adjustments provided were voice recognition software and arrangements for documents to be provided in large print and other accessible formats, as well as dyslexia and dyspraxia assessments and subsequent job analysis and coaching.

Other support included having an office in an appropriate location, technological assistance, and other support provided by the House of Commons diversity and inclusion team.

The House of Commons said it had been working with the Business Disability Forum and had appointed a workplace adjustment case manager to be a point of contact for disabled colleagues.

Fazilet Hadi, head of policy at Disability Rights UK, said: “This is really positive news.

“It’s heartening to know that 28 MPs, four times as many as in the previous parliament, have received workplace adjustments, with more requests in the pipeline.

“Whilst there were more disabled MPs in the previous parliament than the five who officially stated they were in 2019, this step-up in numbers is very welcome.

“The changes in work practise following Covid may be playing some part, as requests for flexibilities and adjustments are now more normalised.”

But she said the representation of disabled people in parliament remained far too low, despite the new figures.

Hadi said: “Despite the positive increase in disabled MPs, the representation of disabled people remains low, given almost one in four of us has a disability.

“We would urge all MPs with a disability or long-term health condition, whether they need a workplace adjustment or not, to speak out about it.

“We need diversity of lived experience in the House of Commons.

“Disabled people need to be confident that our concerns are heard and represented.”

Asked whether the figures showed there were more disabled MPs in the current parliament than the last, or if there were just more MPs requesting adjustments, a parliamentary spokesperson said: “It is vital that parliament is accessible to all.

“The House of Commons has offered proactive adjustment support for newly-elected MPs, who were asked upon election whether they anticipated that they would require any adjustments or had a health condition or disability that may require support.

“We understand that there is more to be done to ensure that disabled people do not face unnecessary difficulties when working in or visiting parliament – and we are committed to making further essential adjustments, ensuring that all our staff are trained in disability awareness.”

The Inclusion and Diversity Strategy 2023-27 published by the House of Commons and the Parliamentary Digital Service describes the intention to address structural barriers, minimise delays to making repairs or adjustments, and ensure more accessible, appropriate shared working environments.

15 August 2024

 

 

Labour fails another transparency test, as DWP appeals order to release information on universal credit deaths

Labour’s Department for Work and Pensions (DWP) has failed its latest test on transparency after appealing against a regulator’s decision that it should release vital information from secret reports into the deaths of universal credit claimants.

The information will show how many internal investigations were carried out into the deaths of universal credit claimants over the last four years of a Conservative-run DWP.

Disability News Service (DNS) has been trying since last November to secure the information, which would show the number of internal process reviews (IPRs) carried out following the death of a universal credit claimant, and what recommendations for improvements were made by the civil servants who carried out those reviews.

DWP has previously insisted that it intends to publish the information “at a future date”.

It has also argued that the “ad hoc release of the requested information into the public domain could engender public distrust in the DWP” and would “only serve to increase” the “misconceptions” and “incorrect views” held by the “general public”.

Despite those arguments, the information commissioner ordered DWP last month to release the information.

But the Information Commissioner’s Office confirmed to DNS this week that DWP has lodged an appeal against that decision.

It will now be left to the information rights tribunal to decide if the information should be released, but it is likely to be many months before that hearing takes place.

Earlier this month, DNS reported how the Labour-run DWP was also blocking the release of information about IPRs carried out into the work capability assessment (WCA) under the last government, as well as information about Conservative plans to scrap the WCA.

There had been hopes that the appointment of Labour’s Sir Stephen Timms as minister for social security and disability would herald a new culture of transparency within the department.

As chair of the Commons work and pensions committee in the last parliament, he had frequently attempted to hold the Conservative government to account over the lack of transparency within DWP and its failure to release crucial reports.

Two years ago, he wrote to work and pensions secretary Therese Coffey (PDF) to tell her his committee was concerned that her department’s “lack of transparency” could undermine public trust in DWP’s work.

Among nine examples of this lack of transparency, he pointed to the failure to publish information from IPRs, and a report on support for “vulnerable claimants” of universal credit.

But his department has now approved the decision to prevent the release of the information requested by DNS.

Only last week, DNS reported that three deaths of disabled people who took their own lives were linked to flaws within the universal credit system, despite DWP previously dismissing fears about the safety of “vulnerable” claimants as “misplaced” and deciding not to implement a recommendation by civil servants working for the prime minister that it should test that a “minimum level of support” for vulnerable claimants was available across jobcentres.

DNS reported in May how a survey by Sir Stephen’s work and pensions committee found two-thirds of DWP staff still do not have enough time to deal with safeguarding concerns “carefully” and “correctly”, despite years of deaths of benefit claimants linked with the department’s actions and failings.

Last December, a dossier of evidence submitted by the PCS union to DWP showed the department to be a failing organisation in a “state of crisis” and facing a “near collapse” of its benefits systems, with staff accusing DWP of “deliberate neglect” and revealing that claimants in vulnerable situations were “falling through the gaps” in the system.

The rollout of universal credit to the hundreds of thousands of disabled people still receiving income-related employment and support allowance (ESA) will begin next month.

DWP declined to comment this week on its decision or to confirm whether Sir Stephen was aware of the move to appeal.

But the department confirmed that it had appealed the commissioner’s decision to the information rights tribunal.

Meanwhile, new DWP figures show that of more than 800,000 people sent a “migration notice” – between July 2022 and February 2024 – telling them they must move onto universal credit, more than a third (34 per cent) had not moved across and therefore had their claim closed.

By February 2024, about 530,000 people had moved across but about 280,000 had not claimed universal credit and had their existing “legacy” claim closed.

Most of these receiving a migration notice will have been receiving tax credits, rather than out-of-work disability benefits, although many will still have been disabled people.

Next month, the universal credit rollout will see claimants of income-related ESA starting to receive their own migration notices.

DWP stressed in this week’s release that the likelihood of tax credit recipients deciding to claim universal credit “may be different” to those on legacy benefits such as ESA.

But significant concerns were raised about the DWP figures on social media.

Labour’s John McDonnell, the party’s former shadow chancellor, described the figures as “extremely worrying”.

He said: “We need a speedy inquiry to clarify what is happening as this could mean many of the poorest are losing all support.”

Greater Manchester Welfare Rights Advisers Group said on Twitter that some of the reasons for so many people failing to claim universal credit were a lack of access to the internet, low levels of digital literacy, and the “appalling” reputation of universal credit, as well as DWP and its Help to Claim service – provided by Citizens Advice and Citizens Advice Scotland – “simply not doing what they say they will do”.

Others on Twitter spoke of the “hoops u need to jump through”, DWP making “any process stressful and inhumane”, and the “very difficult” and “really stressful” process of claiming universal credit.

Another claimant of benefits, a carer for two disabled children, said: “Had my migration letter, not claiming it, when my income support stops we’re gonna manage with what we have coming in, yes we’ll be worse off but I can’t take anymore of the benefits system, the constant letters, the constant examining of our lives, I wanna feel free.”

15 August 2024

 

 

Crowdfunder’s final push could see book on ‘violent’ DWP sent to politicians across the country

Disabled activists are hoping a final push with their crowdfunding campaign will allow copies of a new book about the “violent” history of the Department for Work and Pensions (DWP) to be sent to key politicians across the country.

By this morning (Thursday), the crowdfunder was just £500 short of its “stretched” fundraising goal of £7,000.

The original aim was to raise £3,500, enough money to send a copy of The Department to every Labour MP in the House of Commons.

But the campaign was so successful that the target was doubled, and the aim extended to MPs from other parties.

Now organisers of the campaign hope to raise enough to provide copies of the book to other leading politicians across the country, including some members of the legislative assembly in Northern Ireland (MLAs), Welsh assembly members, members of the Scottish parliament (MSPs) and other key figures such as elected mayors.

They also plan to use some of the funds to organise a campaign event in parliament on 2 September, the day MPs return from their summer break and the same day the books are due to be delivered to the House of Commons.

Among the organisations supporting the campaign are Disabled People Against Cuts, Greater Manchester Coalition of Disabled People (GMCDP), Inclusion London, Recovery in the Bin and the radical working-class media organisation The Canary.

Rick Burgess, a GMCDP spokesperson, said: “While the DWP dictates policy from Westminster, the devastating and harmful effects are felt everywhere. 

“It’s fantastic the crowdfunder has nearly reached its stretch goal. 

“Hopefully this means books could also be sent to key leaders around the country, such as Andy Burnham and the other Metro mayors and key council leaders.

“Local and regional leaders can play a role in bringing this shameful era to an end. 

“Mr Burnham’s support for the Hillsborough Law is important too.

“When passed, it will mean any public inquiry will put a duty of candour on public authorities and officials and provide legal representation for survivors and bereaved friends and family.”

Scottish disability rights campaigner Bill Scott, until recently a senior policy advisor for Inclusion Scotland, but speaking personally, said: “I think that all policy professionals working on disability and health-related issues and every MSP should read this harrowing account of how DWP policy-makers have fashioned policies that have taken hundreds, perhaps thousands, of disabled people’s lives.

“We have to ensure that both reserved and devolved benefits policy-makers not only stop punishing disabled people but instead secure their rights to an adequate income.

“I can’t recommend it more highly.”

The idea for the crowdfunder came from John McArdle, co-founder of the disabled people’s grassroots group Black Triangle, who is leading the project with fellow disabled activist and author Ellen Clifford, who leads the coalition of disabled people’s organisations monitoring the UK implementation of the UN’s disability rights convention.

Among other campaigners supporting the crowdfunder is Anne-Marie O’Sullivan, who has fought for justice for more than a decade for her father Michael, who took his own life in 2013 after being wrongly found fit for work.

In their letter to MPs, which will accompany the book, they will tell them: “It is certain that the new government will be announcing reforms to personal independence payment, benefit sanctions, universal credit and the work capability assessment in the coming months.

“All these areas of DWP policy have been strongly linked to tragic deaths of claimants over the last 15 years, and we believe this will continue to happen if the government does not take the necessary steps to build a new, safer culture within DWP.

“All we ask is that you read this book before deciding your position.”

McArdle said: “Politicians across the country need to know the devastating impact of austerity on disabled people, so they can use that information when making their own decisions on vital local services.

“Successive Conservative-led governments used austerity as a justification for cutting disabled people’s support.

“This book shows how they did that and how it led to countless deaths.

“Metro mayors, MSPs, MLAs and Welsh assembly members all need to concentrate on how they can make the UK a country fit for all to live in.

“This means, above all, tackling the grinding poverty which is shortening lives.

“These lessons must be learned locally and nationally.

“There is a better way to deal with the mess we’re in than to persevere with the failed policy of cuts and austerity which strangles our future wellbeing and has cost lives and caused misery to millions.

“It has failed and been shown to have failed, and disabled people have borne the brunt.”

The Department: How a Violent Government Bureaucracy Killed Hundreds and Hid the Evidence, by DNS editor John Pring, will be published by Pluto Press on Tuesday (20 August).

It describes Pring’s 10-year investigation into how the actions of DWP, spurred on by politicians and the outsourcing industry, led to the deaths of hundreds, and probably thousands, of disabled people, and how they covered up their role in those deaths.

It includes new documents obtained from the National Archives that show how the violence inflicted on benefit claimants built slowly from the late 1980s until it exploded in the post-2010 austerity years.

It also tells the stories of some of those who lost their lives because of that bureaucratic violence, following years of dehumanisation and destitution, and the impact on their families and friends.

Clifford has described it as “an expertly crafted, vigorously researched response to the gas-lighting endured by disabled benefit claimants at the hands of government and the DWP for the past 14 years” and “a powerful call to arms for all decent human beings”.

15 August 2024

 

 

Government ordered to release redacted parts of document on power cuts and disabled people

The Department of Health and Social Care (DHSC) has been ordered to release missing parts of a document that warned national power cuts could cause “catastrophic deterioration” in some disabled people who rely on medical equipment in their own homes.

Although the department released parts of the unfinished report earlier this year, it redacted significant parts of the document and then refused to release those sections when Disability News Service (DNS) complained*.

Now the information commissioner has ordered DHSC to release the missing parts of Rolling Power Outages: Medical Equipment and Vulnerable People, which the government describes as an “internal scoping paper”.

It has 30 days to release the information, although it could still appeal to the information rights tribunal.

The scoping paper considered what advice was available for disabled people who rely on mains-powered medical devices at home and whether there was a need for DHSC to issue its own guidance.

But DHSC decided not to draw up any guidance and to leave it to individual disabled people and their “care teams” to draw up plans for “how they can prepare for and respond to loss of power to their home”, with the paper suggesting they should “take individual responsibility for their own preparedness”.

That conclusion was reached even though the document makes clear that some disabled people could be “at very high risk of catastrophic deterioration” if the power cut was unexpected or continued for longer than their equipment’s batteries lasted.

The paper also admitted that there were significant flaws with the system of local priority services registers (PSRs), which are supposed to ensure energy companies provide “enhanced support to their more vulnerable customers”.

It warned that there were “barriers” that prevented many of those eligible from signing up to a PSR, while there was “an issue” with knowing how many devices supporting people with “the more critical conditions” were being used in people’s homes.

The scoping paper also admitted that “in a national power outage scenario it would not be possible to notify PSR households pre-emptively” that they were about to lose electricity.

And it stated that in a “reasonable worst-case scenario” in at least some types of “national power outage”, services such as providing emergency power to those on the PSR who rely on “at home medical equipment” would “not be available due to the scale and complexity of the outage”.

The attempt to secure the missing information from the scoping paper was the latest effort by DNS over the last two years – in the face of resistance from the last Conservative government – to find out what plans ministers had put in place to protect people who rely on equipment such as ventilators, oxygen concentrators and dialysis machines in the event of a major blackout.

It is not yet clear if the new Labour-run DHSC will take a different position in response to these efforts.

DHSC released only a redacted version of the paper earlier this year, arguing that it was unfinished, and that parts of it were “intended for internal use and taken out of context or in isolation are open to misinterpretation which could cause misunderstanding”.

Although it admitted that there was a public interest argument for releasing the redacted information, it said this was outweighed by other factors, including the need to protect internal communications.

It also argued that releasing the missing information “could lead to a chilling effect between officials as they collaborate across government to develop plans for risks”, and it said that redacted figures provided by Ofgem were “more than 18 months old” and had “not been quality assured”.

And it said it had launched a new website to support the public in planning for emergencies, which included advice for disabled people and information on what to do in a power outage.

But the website includes no new information for disabled people who rely on medical equipment at home, relying instead on DHSC’s previous position that they should “make a plan” in advance with their “care provider, clinical care team and/or equipment supplier”. 

Despite DHSC’s arguments, the information commissioner, John Edwards, concluded in his decision notice that the department’s arguments for preventing the release of the redacted information were outweighed by the public interest in disclosing it to DNS.

He said there were “significant public interest arguments in favour of disclosure” at the time the request was made in January.

DHSC had not commented on the decision notice by 11am today (Thursday) or said if it would release the redacted information.

*The complaint was dealt with under the Environmental Information Regulations, rather than the Freedom of Information Act

15 August 2024

 

 

National network will provide new voice for disabled people battling councils over social care

Disabled people and allies are hoping that a new national network will support service-users who are constantly battling their local authority over their social care packages.

The Care Net is particularly focusing on disabled people who use direct payments to arrange support in their own homes.

It is hoping to act as an umbrella network for local groups of disabled people who want to come together as “one strengthened voice” to campaign for better support from their local authority.

The network was the idea of Iggy Patel, a direct payments-user and managing director of advice, training and advocacy consultancy Halo Able Tec.

He finally decided to act after seeing Disability News Service (DNS) coverage of a report by Disability Law Service, which found that disabled people across England were continuing to face unlawful discrimination and inequality on an “unparalleled” scale due to “unjust” social care charging policies.

That report also showed that few councils were consulting with disabled people and their organisations when taking decisions on care charges.

Halo Able Tec is backed by the user-led organisation Being the Boss, which supports disabled people who employ personal assistants (PAs), and two grassroots carers’ organisations, Adult Social Care Warriors and Bringing Us Together.

Together, they hope to support and develop a network of local groups of direct payments-users around the country who will be able to speak out locally – and eventually nationally – to promote and protect the rights of disabled people who rely on direct payments, which currently “are constantly forgotten about”.

The immediate campaigning priorities are to secure improved support for the direct payments system and higher pay for PAs.

Patel told DNS: “The people we speak to regularly say they feel alone, unsupported, and that no one listens to them in local authorities or the government.

“We have already been working with small groups locally; we want to expand this so everywhere has a group, and the voices of all these groups can be amplified.

“The larger the voice, the more likely it will be heard.”

He added: “Talking to people every day there is a lot more knowledge with disabled people than in the care system.

“Working with each other as peer supporters can get rid of the loneliness people feel and share knowledge and resources.”

Among these resources is the disability-related expenditure guide, which has been accessed more than 12,000 times.

The Care Net argues that a properly supported system of direct payments allows choice, independence and control, but is also a much cheaper option because it cuts out the profits demanded by private sector care agencies.

Patel said that his own local authority refused to provide a pay-rise for his PAs, which meant for two years he could not recruit the care workers he needed.

Instead, the council suggested he use an agency to fill the gaps, which would have cost far more than allowing his PAs a pay rise.

He said: “We keep hearing about austerity and that local authorities have no money, yet a lot of money is spent unnecessarily.”

He said local authorities could also take other measures to cut costs, such as allowing self-assessments, and streamlining paperwork, instead of cutting social care budgets.

He said: “Anyone on a direct payment knows this, but individually our voices are too small, and have little power.

“We hope The Care Net can amplify these voices and try and get a more commonsense approach to social care.”

The network wants to hear from disabled people around England who are interested in setting up their own local organisation of users of direct payments.

15 August 2024

 

 

Retired Paralympian calls for multi-billion Motability reserves to fund more grants for high-cost vehicles

A retired Paralympian has called for the charity that oversees the Motability scheme to use some of its huge financial reserves to allow more disabled people with high support needs to drive independently.

Zoe Dunklin believes that Motability Foundation’s policies on awarding grants that allow customers to lease more expensive vehicle conversions are discriminating against her and many other disabled people who need expensive drive-from-wheelchair adaptations.

She believes some of the billions of pounds of reserves held by the charity and by Motability Operations, the company that runs the scheme on its behalf, should be used to provide more grants for what the Motability scheme calls “complex driving solutions” (CDSs).

Motability Operations currently holds £4.2 billion in reserves, although it insists that nearly all of this is held in the form of vehicles, rather than cash.

Motability Foundation* held nearly £1.8 billion in reserves on 31 March 2023, although it says only about £500 million of this was available to spend on grant-making.

Dunklin is a double amputee and powerchair-user and competed for Britain at the 1996 Paralympics in Atlanta in wheelchair basketball – as Zoe Dickinson – and before that represented her country in swimming.

She has been a Motability customer for more than 30 years.

For more than a decade, Motability rules on awarding grants have prioritised support for disabled people in paid work, volunteering, education, and in caring roles, although there are exceptions made for those whose “circumstances make the use of a complex vehicle conversion essential for… everyday mobility”.

Until recently, Dunklin had a health condition that meant she could not drive, but she is now in a position where she can drive again.

She still has other ongoing health conditions that mean she needs to make regular trips to hospital, while she is also concerned about her husband’s health after a recent heart scare saw them being told they would have to wait more than three hours for an ambulance to take him to hospital.

She may soon be starting voluntary work with a charity, but even if she secures that role she will not meet the Motability criteria of working at least 12 hours a week, and she says she was told by Motability Foundation that “people say they will get volunteer work and [then] don’t”.

Although Dunklin currently has a Motability vehicle, it is only her husband who can drive it.

The only option they could afford would be to lease a vehicle that allowed her to drive but would rely on her husband to load her wheelchair into the back of the vehicle after she had transferred into the driver’s seat, and do the reverse at the other end of the journey.

Instead, she wants Motability Foundation to help fund a van she could drive from her wheelchair, using hand controls, which would allow her independent mobility, but if she paid for it herself would likely mean an advance payment of more than £20,000.

When she complained about the refusal of her application for a grant, she was told: “Due to the high overall cost of the solution, there is a strict criteria in place which every application is assessed and considered against.

“This is to ensure that we remain fair and consistent when making decisions – as you know, sadly we are unable to award a charitable grant to every applicant of a CDS vehicle.”

She was told that Motability Foundation had concluded “there were not sufficient exceptional circumstances for us to be able to fund a CDS vehicle for you” and that the charity was “confident that the correct decision has been made in line with our funding priorities and principles, and programme criteria”.

The charity also concluded that it had “found no evidence of discrimination” against her.

But Dunklin told Disability News Service: “I feel am being directly and indirectly discriminated against by the one organisation I believed to be about freedom and independence.”

She believes that Motability Foundation and Motability Operations should work together more closely and provide more funding for the grants programme, and “listen more to their disabled applicants”.

She said: “Individuals’ changes in circumstances like mine are not being met. 

“As we are getting older, our situations are increasing too.

“My husband has a heart condition, and I want to know I can get him to his appointments and in an emergency to the hospital if an ambulance is going to be a long wait.

“It would be interesting to know how many others cannot or do not think they can fight these decisions.” 

A Motability Foundation spokesperson told DNS: “Motability Operations currently subsidise the cost of all wheelchair accessible vehicles leased through the scheme.

“Those who need additional conversions and adaptations can apply to the Motability Foundation for grant funding.

“Complex vehicles that can be driven from a wheelchair are some of the most expensive solutions that the Motability Foundation awards grants towards, costing between £20,000 and £70,000 a vehicle.

“As a charity, we must focus our funding on meeting people’s mobility needs to ensure they get a suitable vehicle, but also to ensure that we are able to help as many people as possible with the funds available.

“To do this we set funding priorities, which in the case of vehicles that can be driven from a wheelchair, include the vehicle being essential to support the applicant with various activities such as work, education and volunteering.”

She added: “Following an application and several appeals, Zoe Dunklin could not demonstrate that she meets the current funding priorities for a complex driving solution and therefore we cannot fund the vehicle she would like at this time.

“We have, however, offered alternatives which whilst we understand do not enable her to drive independently, will offer alternative mobility to the vehicle she currently leases.

“We are sorry that we are not able to help Zoe at this point in time.

“However, when she has been in her voluntary role for six months and can demonstrate that it meets the criteria set at that point in time, we would gladly consider a new grant application.”

She said the charity held a high level of financial reserves – equivalent to several years of grant funding – because its primary source of income was donations from the “surplus capital” of Motability Operations, which was “unpredictable”, with “no guarantee from year to year that a donation will be received”.

She said Motability Foundation spent £113 million on charitable spending in 2022-23, compared with £78 million in 2021-22, and expected to have seen a further rise in 2023-24.

A Motability Operations spokesperson said: “We work together with the Motability Foundation to support our disabled customers and keep them moving.

“We are in contact with Zoe about her current vehicle and her future options.”

She said that holding £4.2 billion in capital reserves allowed it to reduce the amount it borrows and so reduce costs for its customers by £650 per lease.

She said it also protected customers from the risk of fluctuations in the changing costs of new vehicles, insurance and breakdowns, and the changing value of used vehicles, while allowing it to support customers with affordability.

There are long-standing concerns over the rules for awarding Motability grants, with previous suggestions that they could discriminate against some disabled drivers with high support needs.

Nine years ago, Motability defended the rules – introduced in 2014 – arguing that it had a “finite amount of money”, that the new criteria “allow us to approach applications in a consistent manner”, and that “the complexity and cost of the [drive from wheelchair] vehicles makes it inevitable that some criteria will be applied to prioritise applications for support”.

It is more than five years since high-profile concerns were raised about the levels of financial reserves held by Motability Operations, and over the company’s excessive profits and executive pay.

Those concerns led to parliamentary debates and a critical report by the National Audit Office.

*Motability Foundation is a DNS subscriber

15 August 2024

 

 

Other disability-related stories covered by mainstream media this week

Children and adults with type one diabetes faced “appalling” treatment at London Stansted Airport and were made to feel like criminals, according to a number of complaints made to the BBC. One mum from Lowestoft, in Suffolk, claimed her teenage son was “adamant he won’t fly again” after feeling “bullied” into going through an X-ray scanner that could damage his medical devices. Others described being taken to a room to be searched while their essential equipment was kept at the security desk: https://www.bbc.co.uk/news/articles/c4ngn8pp39eo

The number of parents claiming disability benefits for children has surged by 200,000 since lockdown, new government figures show. Some 714,000 children are forecast to be in receipt of disability living allowance this financial year. This is up 45 per cent from the 494,000 children who were the subject of claims in the financial year 2020-21, figures published by the Department for Work and Pensions show: https://www.independent.co.uk/news/uk/home-news/children-disability-benefits-dwp-allowance-b2596221.html

15 August 2024

 

News provided by John Pring at www.disabilitynewsservice.com

 

Reproduced by kind permission of Crippen

Well, that started to go pear shaped pretty quickly didn’t it?

Only a few days after Sir Stephen Timms as the new minister for disabled people stated that he would:  “… ensure disabled people’s views and voices are at the heart of all we do”, we’re already getting a strong indication that this isn’t the case.

The first example concerns The Disability Action plan which was launched in February by Mims Davies, the then Tory minister for disabled people, following a 12-week public consultation. This, they claimed would improve the lives of disabled people’s throughout the UK.

Now the new Labour government is refusing to release information that would confirm how little the last government was planning to spend on this much-criticised short-term plan.

As stated in a recent Disability News Service (DNS) article, the refusal is important, because it adds to evidence collected by them that the new Labour government is set to continue the Conservative policy of refusing to release key information about its policies to address disability inequality.

The Conservative government claimed earlier this year that its plan set out the “immediate action” it would take in 2024 to “improve disabled people’s lives, laying the foundations for longer term change, and complementing the long-term vision set out in [its National Disability Strategy]”.

However, all 32 actions outlined in the Plan appeared to be low – or zero-budget measures, and the plan was described by disabled people’s organisations as “lacklustre”, “weak”, and just a list of “empty promises”.

Hmm … empty promises, just like those made by Sir Timms earlier?!

You can read the full story in DSN.

Description of cartoon for those using screen reading software

A group of disabled people carrying a DPAC banner are in the shadow of an ivory tower. They are looking very unhappy. At the top of the tower is Therese Coffey, Sir Stephen Timms and Kier Starmer. A large sign hanging from the top of the tower reads ‘under new management’. Coffey, who is looking down on the disabled people is saying to the two Labour politicians: “All you have to do is to just continue the Tory policy of ignoring them!” Starmer is saying: “Works for me!”