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7th April 2022

In this week’s edition:

  • Only one in three DWP websites complies with access laws, says internal report
  • EHRC ‘has become extension of government’ after dropping probe into DWP deaths
  • Disabled peer calls for pressure on MPs to accept improvements to care bill
  • Government delayed rail report after it called for billions in access funds, emails reveal
  • Grenfell: Campaigners ‘horrified’ and ‘sickened’ by minister’s evacuation excuses
  • Down syndrome bill is ‘very weak’ and potentially divisive, say self-advocates
  • DWP caught planning to claw back vital support through universal credit ‘migration’
  • ‘Significant progress’ needed on disability rights in Wales, says report for UN committee
  • Information commissioner rules DNS was not ‘vexatious’ in DWP universal credit request


Only one in three DWP websites complies with access laws, says internal report

Fewer than one third of the websites and other digital services run by the Department for Work and Pensions (DWP) is compliant with its legal duties on accessibility, according to an internal report obtained under the Freedom of Information Act.

A DWP report shared internally in February 2022 shows that 36 of the 141 “live” digital services run by DWP are currently said to be “very high risk”, with another 23 considered “high risk”.

These services include websites, mobile phone apps and software used by the department.

Of the 141 live services, 24 are set to be “decommissioned”, but of the remaining 117, just 36 (31 per cent) were found to be compliant with the regulations.

Of those used by benefit claimants and other members of the public, only 24 of 56 services (43 per cent) are considered by DWP to comply with the regulations.

The figures for digital services used by DWP staff are even worse, with just 12 of 61 digital services (20 per cent) said to be compliant with the Public Sector Bodies Accessibility Regulations 2018.

The regulations came into force in September 2018, more than three-and-a-half years ago.

They say that public bodies must make their websites and mobile apps “perceivable, operable, understandable and robust”.

It is not clear in what way DWP’s websites, apps and software are failing to meet the department’s legal obligations, as the department has so far only provided a brief summary of the reports Disability News Service (DNS) requested.

But Cabinet Office guidance says: “People may not have a choice when using a public sector website or mobile app, so it’s important they work for everyone.

“The people who need them the most are often the people who find them hardest to use.”

The guidance says common problems include websites that are not easy to use on a mobile phone or cannot be navigated using a keyboard, inaccessible PDF forms that cannot be read out by screen readers, and poor colour contrast that makes text difficult to read.

It also warns: “You may be breaking the law if your public sector website or mobile app does not meet accessibility requirements.”

And it adds: “All public sector websites and mobile apps should now be accessible.”

Last night, the Central Digital and Data Office – part of the Cabinet Office – which is responsible for monitoring how public bodies comply with the regulations on behalf of the Cabinet Office, refused to answer questions about DWP’s failings.

It refused to say if it was previously aware of how many DWP digital services were failing to meet the regulations, what action it had taken to ensure DWP met its legal obligations, and whether it was concerned about DWP’s performance.

The reports were sent to DNS by DWP in response to a freedom of information request.

In its response, DWP said: “DWP are prioritising our customer-facing digital services, alongside replacing our ageing IT systems which is allowing us to build accessible services by default, but we know there is more to do.

“Despite the effects of the pandemic, we have made significant progress in this area over the past 12 months.

“We are continuously working to improve our processes and services, including upskilling our workforce and establishing a culture that prioritises accessibility across the department.”

7 April 2022



EHRC ‘has become extension of government’ after dropping probe into DWP deaths

The equality watchdog has been accused of failing disabled people and becoming “an extension of government”, after dropping any attempt to hold the Department for Work and Pensions (DWP) to account for its links to countless deaths of benefit claimants.

In its new strategic plan, the Equality and Human Rights Commission (EHRC) has confirmed that it no longer plans to launch an inquiry into links between DWP’s work capability assessment and the deaths of claimants.

It had originally promised to carry out an inquiry after being approached in April 2019 by Labour’s Debbie Abrahams, a former shadow work and pensions secretary.

But the commission later decided to delay and “deprioritise” the inquiry – blaming the pandemic – and then backed away even further from the commitment by instead announcing plans to address the “systemic barriers” facing disabled claimants in the benefits system.

Now, at the end of EHRC’s 2019-2022 strategy period, it has been unable to point to a single action it has taken to address those barriers.

And while its previous three-year strategic plan promised to “focus on the issues affecting the most disadvantaged in society” and “tackle discriminatory decision-making in the social security system”, its new three-year strategic plan includes no such pledge.

The commission promises instead to “focus our resources where we can make a real, lasting, positive difference to the lives of individuals across Britain”.

In its business plan for 2022-23, several actions are aimed at promoting the rights of disabled people, but there is no reference to investigating deaths or other serious harm caused by the social security system.

Mark Harrison, a member of the steering group of Reclaiming Our Futures Alliance (ROFA), said: “The EHRC is not a serious human rights defender and has certainly let down disabled benefit claimants over the last period.

“Despite having a commitment to tackling discrimination in the social security system in their last strategic plan they did nothing to hold the DWP to account for benefit-related deaths of disabled people, despite overwhelming evidence of discrimination and neglect of duties of care.

“Now it appears they have dropped even the commitment to focus on social security and DWP activities.

“The government has over the last 12 years emasculated the EHRC by slashing funding and imposing political appointments.

“They have now unilaterally decided to scrap their disability advisory committee.

“While the UN has declared ‘grave and systematic violations’ of disabled people’s rights and a ‘human catastrophe’ in the UK, the EHRC has done nothing serious to address this situation.

“The EHRC has lost its independence and has therefore become an extension of government.

“They have lost their ability to hold their political masters to account and the confidence of disabled people and our representative organisations.”

Abrahams, the MP for Oldham East and Saddleworth, said: “Given the Equality and Human Rights Commission’s role as human rights monitor in the UK, with responsibility for protecting equality across nine grounds including disability, I am most concerned that they appear to have dropped any work investigating the social security system issues affecting disabled people from their three-year strategic plan.

“I appreciate that there have been leadership changes at the EHRC and I look forward to meeting with the new team to clarify the EHRC’s position on this.

“In particular, as I have repeatedly raised my concerns with the EHRC about the DWP’s investigation into and recording of claimant deaths that may be associated with DWP activity, and having called on the commission to independently investigate this, I will once more be seeking clarity on their position regarding an inquiry.”

The publication of the commission’s new strategy came only days after DNS published a 10,000-word investigation describing how evidence stretching back more than a decade showed how DWP repeatedly ignored recommendations to improve the safety of its disability benefits assessment system, leading to countless avoidable deaths of disabled claimants, and how DWP ensured that key evidence linking its actions with those deaths was not considered by independent reviews.

It also shows how the cultural problems within DWP extend far beyond the assessment system, touching all aspects of its dealings with disabled people in the social security system, and how the roots of its toxic culture stretch back at least 30 years.

In February, ROFA and Disabled People Against Cuts (DPAC) wrote to EHRC, pointing to a series of deaths and other evidence that has emerged in the last two years as the commission has repeatedly failed to act.

They said in the letter that the situation “continues to deteriorate and claimants continue to die as a result of the hostile climate created by the DWP for Disabled people”.

A spokesperson for the commission refused this week to say why EHRC had dropped its commitment to “the most disadvantaged in society”; failed to point to a single action it had taken over the last three years to tackle discriminatory decision-making by DWP; and would not explain why it dropped plans to hold a DWP inquiry.

She also refused to say if the government had exerted any pressure on EHRC to drop the plans for a DWP inquiry, drop the “focus on the issues affecting the most disadvantaged in society”, and scrap its plans to “tackle discriminatory decision-making in the social security system” in the current strategic plan.

But she said in a statement: “We are an independent body. Given our broad remit and limited resources, we need to make difficult decisions on what to prioritise, but remain committed to protecting everyone in Britain.

“We consulted publicly on our strategic plan for 2022-25 and received over 800 responses.

“We have set out how we responded to the feedback we received as part of the consultation on our website.

“The commission will continue to look at the intersection between socio-economic disadvantage and protected characteristics, across the strategic priorities in our plan as we assess where we can most effectively use our powers to tackle discrimination and uphold equality and human rights.

“As part of our new strategy we want to retain capacity to respond to issues as they arise, and will regularly review our priorities and the impact we are having.”

7 April 2022



Disabled peer calls for pressure on MPs to accept improvements to care bill

A disabled peer has appealed to disabled people and their organisations to pressure MPs to accept changes to the government’s health and care bill that offer “a better, fairer” system of care charges.

Baroness [Jane] Campbell spoke out after she warned fellow peers this week that the government’s bill could lead to increased poverty and ill-health for disabled people, and that some would “undoubtedly” die.

Her intervention in the Lords helped convince peers to vote narrowly in favour of a Labour amendment which would ensure that no-one in England under the age of 40 would have to pay for their care and support.

Baroness Campbell, a crossbencher, had worked with Labour peers to ensure that the amendment “would go some way to alleviate the financial crisis that working-age disabled people face with the current system and the system proposed by the government”.

The government’s much-criticised proposal for a cap on charges in England – widely seen as regressive and unfair – is set to introduce an “extortionate” lifetime cap of £86,000 on how much anyone pays for care, but it would not have counted financial contributions made by local authorities to people’s care and support.

But on Tuesday, an alliance of crossbench, Labour and Liberal Democrat peers – and one Conservative – ensured Labour’s amendment was passed by 160 votes to 151.

This means the bill currently counts contributions by councils, prevents any charges being imposed on adults who are under 40, and ensures there is an assessment of the impact of the government’s plans on disabled people under 40 before they can be introduced.

Because of parliamentary rules that mean a previous amendment cannot be brought back at the current “ping pong” stage of a bill, Labour’s amendment was not as strong as a previous bid to improve the legislation for working-age disabled people.

That amendment, proposed by crossbencher Baroness [Deborah] Bull, former creative director of the Royal Opera House, would have ensured that no-one in England who entered the social care system before the age of 40 would ever have to pay for their support.

But Baroness Campbell told fellow peers that the Labour amendment would still “ease the catastrophic effects of the government’s proposed charging cap reforms on the lives of those dependent on social care”.

She said: “This is a bleak time to endorse charging for social care, capped at an extortionate £86,000.

“Hundreds of thousands of disabled people in Britain are in crisis because of the ever-increasing cost of living.

“Local authorities in England are imposing stricter charging policies for care because they are basically running out of money.

“Disabled people are already being referred to debt collection agencies because they cannot pay their care charges.”

She added: “The government talk about levelling up for disabled people, but really they are doing the opposite.

“These charging reforms force them to contribute to their care and stop local authority care costs counting towards the cap.

“They deny disabled people the life opportunities that others take for granted.”

She said that the bill as it stood – without the amendment – was “defying the principles” of the UN Convention on the Rights of Persons with Disabilities, which “recognises the equal right of all disabled people to live in the community, with the same choices as others”.

She added: “Far from ensuring the rights enshrined by the convention, I fear the bill will lead to increased poverty, ill-health and poorer life outcomes for disabled people. Some will undoubtedly die.

“What does that say about our moral compass, especially when disabled people have already endured two years of disproportionate suffering and death during the pandemic?”

Baroness [Sal] Brinton, the disabled Liberal Democrat peer, said the government’s proposals would “leave poorer, older people and working-age adults with less protection from the catastrophic care costs than others who are wealthier”.

She said: “It is still a disgrace that the arrangements for older people, which assume decades of working and earning, are also used for younger adults with disabilities, who we know are much more likely to be assets- and savings-poor and to need care and support for much longer, and who will therefore accrue much higher levels of cost than older people.

“These proposals from the government are just not fit for purpose and need to be reviewed for this group of younger adults.”

The junior health and social care minister Lord Kamall had argued that the government’s plans were “the only affordable plan on the table”.

He added: “It is also the only fair plan on the table, ending unpredictable care costs for everyone by introducing the £86,000 cap on an individual’s personal care costs.”

He said that changing the government’s plans for the care cap would be “fundamentally unfair”.

He said: “It cannot be right that two people living in different parts of the country, contributing the same amount, should progress towards the cap at different rates based on differences in the amount their local authority is paying.”

He said that the Labour amendment would “result in additional cost”, including the “additional funding” needed to provide free care for disabled people under 40.

The amendment was one of several defeats for the government on the bill, which will now return again to the House of Commons, after MPs return from their three-week break on 19 April.

After the vote, Baroness Campbell praised allies in the Lords who had “worked tirelessly over the last few months in their attempts to persuade the government to reduce the catastrophic financial hardships faced by those who use social care services”.

She told Disability News Service that they had shown that the government’s social care charging cap was “deeply unfair and will disproportionately affect the lives of working-age disabled people, rendering their life chances minimal”.

She called on disabled people’s organisations and disability charities to appeal to MPs in the next few weeks to “carefully consider why the Lords have rejected the government’s proposals and why they must ask for a better, fairer charging settlement”.

She said: “This is your last chance to influence the legislation which will deeply affect disabled people’s ability (or not) to live independently and thrive.”

7 April 2022



Government delayed rail report after it called for billions in access funds, emails reveal

Publication of a report that called on ministers to invest billions of pounds in removing access barriers to the rail system was delayed by the government for nearly a year, emails released under the Freedom of Information Act have revealed.

The delay meant the report by the government’s independent advisers on accessible transport was not published until February this year, six months after the publication of last summer’s National Disability Strategy.

The strategy – later declared unlawful by a high court judge – announced only a nationwide accessibility audit of mainline rail stations, rather than the substantial new funding called for in the report by the Disabled Persons Transport Advisory Committee (DPTAC).

The DPTAC report was finally released on 14 February 2022, 10 days after the closure of a government call for evidence on its Whole Industry Strategic Plan for Rail (WISP), which was supposed to “help shape the Strategic Plan and the future of the railway”.

DPTAC’s chair, Keith Richards, had previously told Disability News Service (DNS) that the reason the paper was not published earlier was because it was “a long-evolving position statement that DPTAC has been developing over the last few years”.

But emails released to DNS under the Freedom of Information Act show that DPTAC had called in March 2021 for its Working Towards a Fully Accessible Railway report to be published.

In one email to a Department for Transport (DfT) civil servant, someone from DPTAC* said on 5 March 2021: “I checked the DPTAC website earlier today and found that our paper on ‘Working towards a fully accessible railway’ isn’t currently on the website.

“As it has been in the public domain for some considerable time this seems somewhat anomalous.”

Another email the same day, also apparently from someone at DPTAC, said: “So if you can get this ‘officially’ published asap that would be great.”

There are further discussions about timings and adding footnotes, and a suggestion on 31 March 2021 that the report should be published “in a couple of weeks” and “certainly” before the publication of the Williams Rail Review white paper, which was eventually released on 20 May 2021.

After that, there were apparently no further discussions about the DPTAC report – which remained officially unpublished – until it was mentioned in another exchange of emails in November and December.

The report was eventually published on 14 February 2022.

As well as the call for about £6 billion to upgrade all stations to “new-build standards of step-free access”, the DPTAC report said that only one in five stations provided step-free access between street and platform to new-build standards, and fewer than two per cent of stations had level access between train and platform.

At current rates of investment, upgrading all stations to new-build step-free access standards would take about 100 years, and the report concluded that there was “no escaping the simple fact that significantly more investment is required”.

Tony Jennings, co-chair of a rail accessibility panel and a disability rights campaigner and member of the Campaign for Level Boarding, said: “Regrettably, the government intentionally delaying publication of the DPTAC report on Working Towards a Fully Accessible Railway displayed a lack of transparency and was a breach of trust.

“In future it is essential that culture changes under Great British Railways (GBR)**, enabling the value of partnership with disabled people to flourish, ensuring inclusion and accessibility sit at the heart of the decision-making process.”

He said the delayed publication of the DPTAC report meant that disabled people, disabled people’s organisations and train companies’ accessibility panels “did not have the opportunity to include the report’s findings in the National Disability Strategy or the WISP call for evidence”.

He said the DPTAC report “clearly demonstrated” that the methodology used by the government to award funding for rail infrastructure access improvements under its Access for All programme “isn’t fit for purpose and significant investment is required now”.

And he said that the report highlighted that “an inclusive, accessible railway is affordable and it is in the government’s gift if they take accessibility seriously”.

Richards said this week that an earlier version of the DPTAC report had already been released in November 2020 through a freedom of information request by The Association of British Commuters.

But although a blog about the release included a link to the report, the post focused solely on unstaffed stations and driver-only trains and made no reference to the report’s calls for billions of pounds in funding for access improvements.

Richards said that DPTAC’s “priority” had been to deliver advice “at the right time to the right people” within DfT rather than publishing the report.

He told DNS: “To this end we had developed our thoughts and set these out in the paper, which we shared with the review team quite early on in the Williams review process.

“As the rail reform discussions were moving at pace, the clear priority was then to focus our limited resources on engagement with the review team to make sure that the advice we were providing was being heard and hopefully listened to.”

He added: “Following-on from the review, our advice was shared widely with DfT officials (including the Cabinet Office during the development of the National Disability Strategy), ministers, our counterparts in Scotland, Northern Ireland and Wales, and other stakeholders.

“Again, our priority was effective engagement in the context of our role as statutory advisors.

“From the perspective of someone outside of the department, it may well look as if the delay in publication of the report was deliberate and that, as a result, our advice to officials and ministers came too late to influence policy, but as we have highlighted above this was not the case.

“The length of time before final publication reflected DPTAC’s own choice to prioritise engagement over publication, including the original intention to publish in March 2021, which was overtaken by events; principally the publication of the railways’ white paper.”

But Doug Paulley, one of four disabled people who took a legal case against the government that led to the National Disability Strategy being declared unlawful, and a leading accessible transport campaigner, said he was sure that DPTAC was “being very forthright and forthcoming in their representations to government”.

But he said that Richards “seems to miss the point that the failure to publish the paper sooner means that it was not available to other organisations and people” to inform their responses to WISP and the government on accessibility.

He said: “Not only does this fail to empower others working towards the same cause, it fails to take an opportunity for DPTAC to amplify their own voice in the government by their report being quoted by others.”

Paulley, who has previously praised the “utterly excellent” report, said he believed DPTAC was “very direct, accurate and uncompromising in stating exactly what effect the government’s and rail industry’s approach is having on disabled passengers, and what needs to happen”.

But he said that, on this occasion, “they did other disabled transport rights campaigners and groups an active disservice in not publishing the report which could have been of great use to us all, particularly given the National Disability Strategy and industry review consultation”.

Alan Benson, another leading campaigner on accessible transport, and chair of Transport for All (TfA), although speaking personally and not for TfA, said he agreed with Paulley.

He added: “Everyone agrees that we’re not going to fix access on the railway overnight. All parties involved are going to have to work together to achieve it.”

He said that initiatives such as access panels set up by train operating companies and “open communication” from the regulator, the Office of Rail and Road, were “starting to build this trust with disabled people”.

But he said that other stakeholders were “not showing the same commitment”.

He said: “Government is talking the talk, for example with the Inclusive Transport Strategy, but errors like this report undermine the good words.

“We have also repeatedly seen good ministers, in Nus Ghani and Chris Heaton-Harris, removed from their post just as they get to grips with the portfolio.

“These actions undermine that building of trust.

“If there’s going to be proper consultation and even co-production going forward, there needs to be a level playing-field.

“When government, or any other stakeholder, withholds information like this the balance of power changes, and not in favour of disabled people.”

*All the names in the emails were redacted

**GBR is the new state-owned public body that will oversee rail transport in Britain from 2023

7 April 2022



Grenfell: Campaigners ‘horrified’ and ‘sickened’ by minister’s evacuation excuses

Disabled campaigners say they are “horrified” and “sickened” by the government’s “unconscionable” refusal to ensure that disabled people living in high-rise buildings have the right to a personal emergency evacuation plan (PEEP).

Fire minister Lord [Stephen] Greenhalgh told fellow peers on Monday that the government had to question how much it was “reasonable to spend” on ensuring that disabled people have a PEEP as ministers “seek to protect residents and taxpayers from excessive costs”.

He was speaking on Monday as the House of Lords finished its examination of the government’s building safety bill, which will now return to the Commons for MPs to consider amendments made by peers.

The bill approaches its final parliamentary stages nearly five years after the Grenfell Tower disaster, in which 72 people lost their lives, including 15 of its 37 disabled residents.

The ongoing Grenfell Tower Inquiry has already recommended that owners and managers of high-rise residential buildings should be legally required to prepare PEEPs for all residents who may find it difficult to “self-evacuate”.

But the government has refused to back such a proposal in its bill.

As well as the cost of making PEEPs mandatory, Lord Greenhalgh said on Monday that a government consultation also raised other “substantial difficulties”.

He said: “On practicality, how can you evacuate a mobility-impaired person from a tall building before the professionals from the fire and rescue service arrive?

“On safety, how can you ensure that an evacuation of mobility-impaired people is carried out in a way that does not hinder others in evacuating or the fire and rescue service in fighting the fire?”

He said the government would now launch another consultation, this time looking at its new plans for “emergency evacuation information-sharing” (EEIS), although it has yet to explain how EEIS would work.

It plans to publish the proposals next month on the same day that it releases its response to its PEEPs consultation.

A government spokesperson yesterday (Wednesday) declined to provide any further details about ministers’ EEIS plans.

The minister’s comments have horrified campaigners from Claddag, a disabled-led leaseholder action group that is fighting for disabled people within blocks of flats to have the right to an evacuation plan.

Claddag said the new consultation was a “shameful attempt to evade the Grenfell Tower Inquiry’s recommendations” and described the government’s continuing refusal to accept the PEEPs recommendation as “unconscionable”.

A Claddag spokesperson said they were “horrified and deeply dismayed” by Lord Greenhalgh’s comments.

She added: “We were sickened to hear the minister question whether any associated costs of evacuation plans are reasonable as he ‘seeks to protect residents and taxpayers’ from costs.

“Lord Greenhalgh has repeated the tired myth that every evacuation plan involves a cost.

“[He] is provoking fear and resentment among cash-strapped leaseholders against their disabled neighbours, based on a dangerous generalisation.

“The final blow was Lord Greenhalgh’s attempt to shame disabled people into ‘staying put’ in a fire to avoid ‘hindering others’ from evacuating. Please let that sink in.

“It is preposterous for the government to assert that it is ‘committed to supporting the fire safety of disabled people’ when it rejects the use of evacuation plans on the basis of costs, convenience and ableism.”

Claddag said Lord Greenhalgh was wrong to suggest that it was not possible to evacuate mobility-impaired residents before firefighters arrive.

To demonstrate why he was wrong and to highlight Claddag’s concerns about the government’s “absurd” position, Claddag co-founder Sarah Rennie has given Disability News Service permission to publish details of her own PEEP (see below).

She said: “I presented my own evacuation plan to my managing agents, despite their fire safety advisors urging them to refuse to accept a plan for me and leave me to the fire service. A friend who specialises in evacuation plans helped me put mine together.

“I live on the 13th floor and moved in to my flat on the understanding I could use the lift in a fire.

“As part of the building safety crisis, we discovered my lift was not constructed properly and could not be used in a fire.”

Sarah Rennie:

“We are able to hear our fire alarm clearly. If we are in the flat, my personal assistant (PA) collects my evacuation chair and hoists me into it. All my PAs are trained how to use it and practice regularly. Many of my neighbours have my phone number and check on my whereabouts as we descend the flights of stairs so they can keep the fire service and building management briefed on my location.

“We had a real fire in January on the eighth floor. Despite the time it takes me to transfer and move down the stairs, I had managed to get to the floor below the fire before the fire service arrived. This massively improved my risk of survival. What’s more we barely passed anyone on the stairs as they’d all long gone, so I don’t understand how Greenhalgh thinks I hinder anyone.

“Whilst not everyone has a full time PA like me, not everyone needs this to evacuate. Some people simply need a guiding arm from a neighbour or to check they heard the alarm.

“I have all the components I could possibly need to evacuate safely, so it’s absurd that the government’s policy against evacuation plans would stop me if my managing agents were not responsible and progressive.

“Without my evacuation plan, I would be forced to stay put. Research shows it takes 27 minutes for the Fire Service to intervene. Being rescued in a rush to save your life, without appropriate training or equipment for your impairment, may lead to significant or life-changing injuries. But by rejecting the opportunity to evacuate with time and planning, we’re making these unnecessary injuries virtually inevitable, not to mention the pressure being put on the fire service.”

7 April 2022



Down syndrome bill is ‘very weak’ and potentially divisive, say self-advocates

Campaigners with learning difficulties have raised serious concerns about a “very weak” and potentially divisive bill that has been approved by parliament and aims to improve support for people with Down syndrome.

MPs and peers have approved the government-backed private member’s bill, proposed by the former Conservative defence secretary Dr Liam Fox, despite significant concerns being raised about its contents and purpose.

The Down syndrome bill has just a few simple clauses and will ensure that councils and other relevant public bodies – such as NHS trusts and schools – have “due regard” to new guidance, but it provides no new funding.

The guidance – which will be issued by the government – will explain the steps that it would be “appropriate” for the public body to take to meet the needs of people with Down’s syndrome in its area on social care, health, education and housing.

Heidi Crowter, a disabled campaigner who is a member of the National Down Syndrome Policy Group, which has played a significant role in promoting the bill, said that she was “so happy” that the “fantastic” bill would now become law.

On her blog, she said she was so passionate about the bill “because I am someone who happens to have down’s syndrome and I am living proof that people with down’s syndrome with the right support and care can live [a] funfilled life”.

But other campaigners with learning difficulties have been critical of the bill.

People with learning difficulties who are members of the Covid-19 Support and Action Group, which was set up by the disabled people’s organisations People First (Self Advocacy) and Change, discussed the bill last month.

They said their key response to the bill had been to question “why” it was necessary.

They said: “Our understanding is that it didn’t originally come from people with Down syndrome and the bill hasn’t been written by people with Down syndrome.

“In fact, there was very little consultation or communication about this before it was put forward as a bill.

“This is not to say that people with Down syndrome don’t or shouldn’t support the bill, but it does cause us concern about why it is felt that the Down syndrome bill is necessary.

“Why do public bodies need guidance just for people with Down syndrome and not for other people with learning difficulties or disabilities?

“It is taking a very backward step. It is focusing on a person’s diagnosis and condition; it is singling out one diagnosis and condition.

“It does not reflect the values and principles of the social model of disability. We also fear it is at risk of compromising the rights of others.

“Does this mean we need to have a bill (special guidance) for every diagnosis and condition?”

The group added: “The arguments for the bill seem to be very weak.

“In our view it is weak and unnecessary and at worst divisive.”

The disabled Liberal Democrat peer Baroness [Sal] Brinton told fellow peers on Friday that the bill had raised the profile of Down syndrome, which was “a good thing and long overdue”.

But she pointed to the risk that it could create a “hierarchy of learning disability” against a background of “limited resources”.

Last month, at the bill’s second reading, Baroness Brinton, a vice-president of the Local Government Association, said she feared that this new hierarchy “risks doing harm to the rights of other disabled people, particularly people with learning disabilities, which may also be discriminatory”.

She said: “I know that by giving one group rights when resources are scarce, others will not get them.”

She also raised concerns that the bill represented “a regressive step politically, by advancing a medical model of disability and elevating diagnosis over individual needs” and would “create considerable legal and regulatory complexity for local councils, the NHS and schools at a time when they are already stretched in meeting statutory duties”.

At second reading, the Green peer Baroness [Natalie] Bennett had raised concerns that the bill’s duties “demand very little of public bodies”, “attract no new funding”, and “provide no meaningful mechanisms for enforcement or redress”.

The junior health and social care minister Lord [Syed] Kamall told peers last month that the bill was “not about enhanced rights” for people with Down syndrome, but was about “making sure these identifiable and unique needs are not overlooked when planning, designing and delivering services”.

He told peers on Friday: “The bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support.

“Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.”

He said the government would “consult with a broad set of stakeholders in developing the guidance, including those with other conditions” and that “people with lived experience will be at the heart of this at each phase of its development”.

7 April 2022



DWP caught planning to claw back vital support through universal credit ‘migration’

The Department for Work and Pensions (DWP) has been caught trying to claw back vital support from disabled people set to be “migrated” across to the new universal credit from their existing benefits.

The clawback means that disabled people whose support needs are found to increase after they have been moved to universal credit will not benefit as they would otherwise have done.

The draft proposals (PDF) – described as “sleight of hand” by the disabled activist who spotted the move – will affect those who are moved from the universal credit limited capability for work (LCW) group to the limited capability for work-related activity (LCWRA) group after a work capability assessment.

The government’s proposals state that any increase in their benefits that they would expect to receive after such a move would be wiped out under the draft plans.

This is because ministers have produced draft regulations that aim to update how DWP manages the delayed process of moving claimants from benefits such as income-related employment and support allowance (ESA), income-based jobseeker’s allowance and income support onto universal credit (UC) through what is known as managed migration.

The managed migration process was paused because of the COVID-19 pandemic, but it is set to restart soon.

Ministers have promised to provide top-up “transitional protection” for those moved onto UC as part of the managed migration process, if their circumstances haven’t otherwise changed, and for those who were previously receiving severe disability premium.

This protection is supposed to ensure that claimants are not left worse off if moved onto UC through managed migration, although the extra support is gradually reduced every year when benefits are increased in April through the annual uprating process, and it is removed entirely if the claimant has a significant change of circumstances.

But the draft regulations state that those who later move into the LCWRA group from the LCW group will see their transition payment cut by the amount of the extra payment they are entitled to.

Disability activist Gail Ward, who spotted the ploy in the draft regulations, said the move was “absolutely a disgrace”.

She told DNS: “It’s another pernicious move by the government to cut back on benefit claimants.”

She said she believed the draft regulations would “cause problems” when they were eventually debated by MPs.

A DWP spokesperson refused to clarify the intention of the LCWRA regulation, or how the department justified the measure.

But he said: “Transitional protection will be paid via a transitional element that will be included in the universal credit award.

“Over time, the transitional element will be eroded by increases in or the claiming of other elements in universal credit.

“The transitional element can also end in certain circumstances.”

The social security advisory committee, which advises DWP on benefits, announced last week that it will be carrying out “closer examination” of one element of the draft regulations.

It wants to “look closely at how best to provide a framework of oversight, reporting and scrutiny” of the migration process.

Dr Stephen Brien, the committee’s chair and often described as the “architect” of universal credit, said: “A process to move around 1.7 million households, many with complex lives, onto universal credit from legacy benefits creates a significant risk for both those who are reliant on these benefits and also for the Department for Work and Pensions in delivering it.

“For the public to have confidence in this process and to minimise risk further consideration needs to be given to establishing appropriate independent oversight and scrutiny of the programme as it moves forward.”

The DWP spokesperson declined to say whether the department agreed with SSAC’s comment, but he said: “The government is committed to ensuring the final phase of universal credit is rolled out safely and is responsibly delivered by the end of 2024.

“The department will work closely with our stakeholder groups throughout this work to monitor and understand what support is required and what works best for claimants.

“The department will also continue its regular engagement with the committee.”

The committee’s concerns come as the information commissioner has ruled against efforts by DWP to brand Disability News Service “vexatious” for trying to find out how many disabled people are expected to lose out in the move to universal credit (see separate story).

Meanwhile, 290,000 claimants of disability living allowance (DLA) and personal independence payment (PIP) are set to lose the right to receive the Warm Home Discount (WHD), which offers households at risk of fuel poverty cuts to their energy bills.

This year, the Department for Business, Energy and Industrial Strategy (BEIS) is set to increase the payment by £10 to £150 for households across England and Wales.

But although BEIS is increasing annual spending on WHD from £350 million to £475 million a year*, with about 750,000 more households to benefit, many of those receiving PIP or DLA will no longer be eligible.

Those PIP and DLA claimants who also receive means-tested benefits such as income-related ESA will be able to receive the discount, but those who do not receive “one of the specified means-tested benefits or income-capped Tax Credits” will not be eligible.

This means that the number of DLA and PIP recipients who receive WHD will fall by about 35 per cent (290,000 individuals).

In the government’s response to a consultation on the plans, it says it believes that the number of recipients “who declare they have a long-term illness or disability” will rise in total by 160,000 – despite the fall in the number of PIP and DLA recipients – an increase of 12 per cent compared to the current scheme.

*At 2020 prices

7 April 2022



‘Significant progress’ needed on disability rights in Wales, says report for UN committee

A “significant amount of progress” still needs to be made on implementing the UN disability convention in Wales, according to a new report co-produced by disabled people.

Disability Wales has been working with disabled people across Wales on the “shadow report”, which shows how the UN Convention on the Rights of Persons with Disabilities has been implemented in Wales since 2017.

The report says that some progress has been made since 2017, including the Labour-run Welsh government’s commitment to enshrining the convention into Welsh law, and its publication of an action plan on disability rights.

It also highlights the Welsh government’s “rights-based approach to policymaking”, which it contrasts with the approach of the Conservative UK government in Westminster.

But the report says there is still a “clear sense of frustration” among disabled people at the “perceived stagnation” of Welsh government policy, with many of its policies failing to improve their “material circumstances”.

In 2020, Disability Wales research found that 76 per cent of disabled people in Wales who were surveyed did not believe their rights would improve over the next five years.

One respondent to a survey carried out for the new report said that poverty was “a fact for disabled people in Wales”.

Much of the relevant policy on poverty is the responsibility of the UK government in Westminster, but the report points out that some benefits are distributed by local authorities, such as social care direct payments and local housing allowance, and are therefore the responsibility of the Welsh government.

The report also points to the “challenges” thrown up by the COVID-19 pandemic, with government research showing that 68 per cent of Covid-related deaths in Wales were of disabled people.

A key concern during the early weeks of the pandemic was the imposition of Do Not Attempt Resuscitation (DNAR) notices on disabled people’s medical files, with one GP practice in south Wales writing to disabled patients to ask them to sign a DNAR form so as to save medical resources for “the young and fit who have a greater chance”.

Among other potential breaches of the convention in Wales, the report says that public transport has been “repeatedly raised as a major limitation on independent living, especially for those living in North Wales or in rural areas”.

There have also been incidents of disabled people being “unable to choose where they live and having to move away from loved ones and support networks”.

One respondent to the survey said: “I have experienced the threat of being placed against my will into residential accommodation 50 miles from any friends as there wasn’t anywhere available locally.

“When I expressed my dismay at this I was told that a court order could be made to force me to accept this accommodation.”

The report also highlights “significant barriers” faced by disabled people trying to access education, while access to appropriate housing is a “key concern” for many disabled people in Wales.

One improvement since 2017 has been the establishment last year of the Welsh government’s Access to Elected Office Fund Wales, which provides funding for impairment-related costs to disabled candidates for political office.

But the shadow report also points out that many blind and partially-sighted people still cannot vote in secret and that this process “must be improved” so they can vote independently.

The report concludes that there is a persistent gap between “the experiences of disabled people and the intentions of those in power” in Wales.

It adds: “Although we have seen some positive steps since 2017, the next challenge is to implement the rights of disabled people fully in Wales in the wake of the pandemic and the impending cost of living crisis.”

The shadow report, and three others covering England, Scotland and Northern Ireland, will be submitted to the UN’s committee on the rights of persons with disabilities, along with a UK-wide report.

The UN committee will use the shadow reports – and other evidence – to help it draw up a list of questions to put to the UK government, and the three devolved governments in Wales, Scotland and Northern Ireland, which will have a year to respond in writing before being examined publicly by the committee.

7 April 2022



Information commissioner rules DNS was not ‘vexatious’ in DWP universal credit request

The information commissioner has ruled against efforts by the Department for Work and Pensions (DWP) to brand Disability News Service “vexatious” for trying to find out how many disabled people are expected to lose out in the move to universal credit.

Disability News Service (DNS) has been trying for nearly 30 months to use the Freedom of Information Act to secure updated figures showing the true impact that universal credit (UC) will have on disabled people claiming benefits.

But DWP eventually accused DNS of issuing “vexatious” and repeated requests as a justification for refusing to release a document that could contain those figures.

Now the Information Commissioner’s Office has ruled that the latest DNS request, from January 2021, was “neither vexatious nor repeated”.

It stated: “The request clearly has value and purpose as it seeks information that would increase public understanding of whether a move to Universal Credit is likely to benefit disabled households on legacy benefits.”

It has ordered DWP to produce a fresh response to the DNS request.

DWP has issued contradictory statements and has blocked attempts to force it to release “internal analysis” which it has admitted carrying out and which it used to estimate how many disabled people would gain from the move to universal credit.

In its latest attempt to secure the information, DNS asked only for a copy of the internal analysis.

In its response, DWP described how the analysis was carried out, but failed to include a copy of the document.

When DNS asked the department to review its response, as it had not provided a copy of the analysis, it responded last year by branding the request “vexatious”.

DNS first began in 2019 trying to secure figures from DWP that would confirm that hundreds of thousands of disabled people would lose out financially by the time the rollout of universal credit was complete.

Ministers have repeatedly claimed that around one million disabled households will receive a higher entitlement under UC than they would have received under the previous “legacy” benefits system.

But every time they repeat the figure, they fail to say how many disabled households are expected to receive a lower entitlement under UC.

The most recent DWP equality impact assessment, published more than a decade ago, in November 2011, suggested that the number of disabled households gaining financially from UC would be at least matched by the number losing out (with about 800,000 households in each group), with disabled people who are out of work particularly likely to lose out.

But DWP told the Office for Statistics Regulation that the figure of one million households came from later “internal analysis carried out to look at the impacts of a proposed policy change”.

DWP is claiming that this analysis “did not estimate how many people would lose out in the move to Universal Credit”, but only those who would gain.

But despite DWP admitting the existence of this analysis, it has refused to release it.

The information commissioner has now given DWP 35 days to produce a new response to the DNS freedom of information request.

A DWP spokesperson said: “The department is considering the recent decision notice.”

7 April 2022



Other disability-related stories covered by mainstream media this week

Channel 4 News has been working with the Bureau of Investigative Journalism, which has been researching how long people are waiting for a disabled facilities grant to make adaptations to their homes. The findings show huge variations around the country – with a year’s wait for an initial assessment in some areas, while in other places there’s a two to three year wait for work to be completed: Read the Channel 4 news story 

People who claim personal independence payment (PIP) or who were denied the benefit entirely could be entitled to backpay following a new review by the Department for Work and Pensions (DWP). DWP is looking into past claims made by deaf or hearing-impaired people following a decision by the upper tribunal. It relates to whether people who are deaf or hearing-impaired are considered to be able to wash or bathe safely, as part of the PIP assessment: Read The Mirror story on PIP 

An investigation has been launched after a furious mum claimed her autistic son was placed in an “isolation room” without her knowledge. South Ayrshire Council is looking into claims that a seven-year-old boy, who is autistic, was left “terrified” after he was deemed to have been disruptive in the classroom and was placed in an “isolation room”: Read The Mirror story 

A 14-year-old autistic girl was unlawfully detained in hospital and restrained in front of scared young patients, a high court judge has found: Read The Guardian story

7 April 2022


News provided by John Pring at