Contents
Ministers decided to sit on critical PIP report, just days before publishing ‘brutal’ green paper 2
Disabled people ‘have been betrayed’, 20 years on from groundbreaking Life Chances report 7
‘Jaw-dropping’ evidence from CQC bosses on safety and IT failures shocks MPs 10
Minister agrees to cross-party talks on strengthening rights for disabled renters 12
John Evans: Death of independent living pioneer leaves ‘massive gap’ and vital legacy 14
Other disability-related stories covered by mainstream media this week 17
Tory ministers blocked ‘unique’ research on ESA claimants from inclusion in benefit cuts green paper
Conservative ministers prevented research that showed disabled people on out-of-work benefits were subject to high levels of stress, debt and isolation from being included in a controversial policy paper that called for cuts to spending on those benefits.
The research had examined the “health, social and economic profile” of disabled people who received employment and support allowance (ESA).
It showed they were “a population reporting high levels of stress”, while “many faced serious debt arrears” and were “more likely to live by themselves, have a small network, and feel isolated and lonely”.
The research* was described as “a unique opportunity to gain valuable insights into the mental health and life circumstances of this group of people, and compare their experiences to those in the rest of the working age population”, as it used data from the national Adult Psychiatric Morbidity Survey.
The report described how ESA claimants in England were much more likely than the rest of the working-age population to struggle with using public transport, dealing with paperwork and managing money, while two-thirds had a common mental health condition.
The research is believed to have been completed in the early months of 2020, but DWP sat on it for more than a year before finally deciding not to publish it.
A Department for Work and Pensions (DWP) email, obtained by Disability News Service (DNS) through a freedom of information request and dated 20 May 2021, shows ministers decided not to publish the report, but also to prevent it from being included in the “health and disability” green paper that was about to be published.
That Shaping Future Support green paper said that rising spending on disability benefits “suggests there is more we can do to enable independent living and employment” and that ministers want to “explore making bigger changes to the benefits system” that will mean the system is “more affordable in the future”.
The work and pensions secretary at the time was Therese Coffey.
Ministers appear to have concluded that research demonstrating the significant barriers and challenges facing ESA claimants was unlikely to be a helpful addition to a green paper that laid the foundation for further cuts to support.
The 20 May email, copied to Coffey and the minister for disabled people, Justin Tomlinson, said: “Ministers have reviewed and are not content to publish ‘A health, social and economic profile of ESA recipients in the 2014 Adult Psychiatric Morbidity Survey’ and do not want it included in the Green Paper.”
The email was released in response to a freedom of information request by DNS, following the new Labour government’s decision last October to publish the ESA report and 30 other papers that were commissioned by DWP under Conservative-led governments, but were never released.
DNS had requested documents that showed why Conservative ministers had refused to publish the ESA research report.
In its freedom of information response, DWP said the single email was “the only recorded information we hold” on the decision by ministers not to publish the report.
The Conservative party had not responded by 11am today (Thursday) to a request to comment.
*The research was carried out for DWP by the National Centre for Social Research (NatCen)
16 January 2025
Ministers decided to sit on critical PIP report, just days before publishing ‘brutal’ green paper
Conservative ministers decided to hide a report that exposed the flaws of the “degrading” personal independence payment (PIP) system, just five days before they published proposals to replace PIP cash payments with vouchers or one-off grants, ministerial emails have revealed.
Disability News Service (DNS) has obtained copies of emails exchanged last year between ministers and advisers, which show how the minister for disabled people, Mims Davies, was asked to approve the publication of four Department for Work and Pensions (DWP) research reports in January 2024.
One of those reports showed how the dishonest and unfair PIP assessment system left disabled people “broken”, “numb” and “fuming”.
When ministers finally made a decision, three months later, on 24 April, they decided to allow publication of three of the reports, but not the PIP research, with an email sent by a member of the ministerial team stating that ministers and special advisers were “not content to agree to publication” of that report.
Five days later, work and pensions secretary Mel Stride published his hugely controversial health and disability green paper, in which he said he was “concerned” about the growth in spending on PIP, and questioned whether this was “providing value to the public”.
Among its proposals – described as a “brutal, ideological attack” on disabled people’s support – the green paper suggested making it harder to claim PIP and even replacing cash payments with vouchers or one-off grants.
Researchers for the PIP report had interviewed disabled people who had been awarded zero points after being assessed for their PIP eligibility.
One of those interviewed, who had ME, and spent all but half an hour every day in bed, took three months to fill out his PIP claim form, but he said that when he tried to explain more about his case to the assessor, he was “cut off”.
Like all the interviewees, he was given zero points and so was found ineligible for any support with his disability-related costs.
The emails were released in response to a freedom of information request from DNS, following the new Labour government’s decision in October to publish the PIP report and 30 other papers commissioned by DWP under Conservative-led governments, but which were never released.
DNS had requested documents that showed why ministers refused to publish the PIP research report.
DWP provided just three short emails to DNS.
The first email was sent to Davies on 29 January 2024, asking if she wanted to publish the PIP research report.
The response, 10 days later – either from Davies or a member of her team – suggests “we should wait as there is a lot of thinking in this area”, and then warns: “Could set hare’s [sic] running and so not to publish while in this space of policy development.”
The final decision to prevent publication of the research, apparently from a member of Davies’s team, comes two-and-a-half months later, on 24 April, just five days before the green paper’s “brutal” attack on PIP was to be published.
In its freedom of information response, DWP said the three emails were “the only recorded information we hold” on the decision by ministers not to publish the PIP report.
Neither Davies nor Stride had responded by 11am today (Thursday) to a request to comment.
16 January 2025
Activist’s ‘genius’ two-year plan opens door to more generous compensation for disabled rail passengers
A disabled activist has won praise for a successful two-year plan that has exposed the “ridiculously-low” awards handed out by the Rail Ombudsman to disabled passengers.
Doug Paulley’s efforts have led to the ombudsman issuing what appears to be its highest-ever compensation award for a failure to provide assistance, opening the door to more generous payments for countless future disabled passengers.
He began his campaign because he was frustrated at the ombudsman’s failure to award a fair level of compensation to disabled passengers who had faced discrimination when trying to obtain passenger assistance on a rail journey.
The ombudsman’s average award for a passenger assistance failure is just £146, far lower than such cases are likely to receive if a case for discrimination under the Equality Act is taken through the county court.
In an attempt to prove his argument, Paulley launched a court case and a complaint to the ombudsman at the same time, following an incident in March 2023 at Euston station in London.
This led to an award from the ombudsman of just £125, but he rejected this sum and completed the court case, rejecting multiple offers of out-of-court settlements from Network Rail until the court awarded him £1,325 in compensation.
Paulley then used the two figures – £125 and £1,325 – to persuade the ombudsman to review its framework for setting the level of awards for disability discrimination, arguing that it did not appear to meet its aim that awards were underpinned by “moral fairness” and “natural justice”.
Fellow accessible transport activist Sam Jennings also began to challenge the unfair ombudsman payouts, pointing out on her campaigning website Disabled By the Railway that average ombudsman awards for 2023 were only about £100 (PDF), even for significant acts of discrimination against disabled rail passengers that might lead to thousands of pounds of compensation under the Equality Act if taken through the civil courts.
When Paulley faced another passenger assistance failure, at Birmingham New Street station in August 2024, he lodged another complaint with the ombudsman.
This time, even though it was a less serious failure, the ombudsman awarded him £1,200, nearly 10 times the level he had been offered after the more serious Euston assistance failure.
A staff member at Birmingham New Street had failed to provide him with the assistance he had booked for a connecting train to Bristol because his incoming train had arrived late and the staff member had other assistance requests to deal with.
Paulley had to make his own way to the platform for the connecting train and position himself by the train door, to prevent its departure, until another member of staff eventually arrived with a ramp just before it was due to depart.
In its ruling, the ombudsman said legal advice it had taken suggested the assistance failure by Network Rail was “a failure to provide ‘reasonable adjustments’ in accordance with the Equality Act 2010” and although the ombudsman “does not have the same powers as a court and cannot make a declaration under the Equality Act 2010… the impact of the breach will be assessed in considering the level of compensation to award”.
Although it was “a one-off assistance failure… the incident occurred in a public place, and caused [Paulley] inconvenience and distress”, the ombudsman said.
The £1,200 awarded to Paulley is believed to be the highest amount it has ever awarded for an assistance failure.
In the five years between 2018 and 2023 (PDF), the highest the ombudsman awarded for an assistance failure was just £1,000.
This week, Paulley praised the ombudsman for listening to his concerns and making a “step change” in the level of its awards, which he told the ombudsman was “brilliant news for discriminated-against disabled people, both in comparative ease of access to justice for failures and in bringing home to rail service providers the impact of such failures”.
Paulley says he is now more likely to recommend other disabled passengers seek justice through the ombudsman, as its new approach is more likely to be in line with the UN Convention on the Rights of Persons with Disabilities, and the Equality Act.
He told Disability News Service that the ombudsman’s new approach was a “significant change”, and that hundreds of disabled passengers have previously received awards that were probably about 10 per cent of what they should have been.
He said countless other disabled people would have been dissuaded from appealing to the ombudsman because “they knew any award would be at an insulting level”.
Paulley said the low levels of ombudsman awards were “complicit with the industry’s undervaluing of disabled people’s discrimination and experiences”.
He said: “It shouldn’t have taken activism to make them do this, and it is still limited, and everything is still very far from perfect, but I think it may make a difference.”
He said that if a substantial proportion of future accessibility cases result in ombudsman awards of more than £1,000 it should make rail companies take the issue of assistance failures “a bit more seriously”.
He added: “Previously I would be more reticent to recommend the ombudsman to discriminated-against travellers but now I’m a bit happier doing so.
“The rail industry needs to recognise assistance failure as a significant discrimination event rather than a customer services issue to be fobbed off with token awards.”
Jennings said Paulley’s victory had “solved a huge problem with the Rail Ombudsman, which came to light in a set of research reports published by the Office of Rail and Road last year”.
She said: “It finally forces the ombudsman to act in line with the Vento scale – the established guide from the senior courts that is used to assess compensation due in discrimination cases.
“In the year 2023, the ombudsman’s average compensation award was just £101 – just a fraction of the minimum £1,200 due under Vento banding.”
But she said there was “still a huge problem” because the ombudsman can only award a maximum of £2,500, which is near the foot of the Vento scale, whereas the highest Vento banding reaches £58,700 for the most serious cases.
And she said the ombudsman’s own reports show it is “barely even functioning for disabled people”, having received just 316 complaints in five years.
Jennings said: “I’ve personally experienced that many access fails in that time, so what about the other millions of disabled people in Britain?”
She added: “The ombudsman must be reformed to be fully compliant with the Equality Act 2010, and to make awards in line with Vento banding.”
Emily Yates, a disabled researcher in equality and human rights, and co-founder of the Association of British Commuters, said: “Doug Paulley’s two-year strategy has been proven an act of genius, and that’s no mere compliment.
“He has gone through every possible step to prove the holes in the system, arguing the case for equality law compliance at each stage, and backing this up by comparison with other experiences within the same system.
“It’s like a model for all campaigners of how the best legal activism should be done, and what can be achieved by it.
“This has created a precedent that should, by rights, change Rail Ombudsman practices in the UK forever.
“Promoting this precedent and campaigning for reform should now be a priority for all disabled people’s organisations working on rail accessibility complaints and transport discrimination.”
Asked whether it would use Paulley’s case as a precedent for future awards, a Rail Ombudsman spokesperson said in a statement: “As a general policy, the Rail Ombudsman does not comment publicly on individual cases to maintain confidentiality and fairness in our processes.”
Potential resources for other disabled people considering complaints or legal action for a failure of rail passenger assistance include this guide (PDF) by the Equality and Human Rights Commission, and this guidance (PDF) from the presidents of the Employment Tribunals in England and Wales, and in Scotland
16 January 2025
Disabled people ‘have been betrayed’, 20 years on from groundbreaking Life Chances report
Disabled experts who advised the Labour government on its ground-breaking Life Chances report – which was published 20 years ago on Sunday – say successive governments over the last 20 years have abandoned its ambitious goals.
The 20th anniversary of the report – which placed independent living at its heart – comes just days after the new Labour government announced further delays to long-term reform of the adult social care system in England.
Improving the Life Chances of Disabled People was widely viewed as a radical and ambitious report that had the language of rights embedded in its pages.
Influential disabled people played a key role in drafting the report, which used social model language and principles, and called for every local area to have its own user-led organisation modelled on centres for independent living (CILs).
It made recommendations across four key areas: independent living; early years and family support; transition to adulthood; and employment.
The report – produced by the Prime Minister’s Strategy Unit – also made an ambitious pledge: “By 2025, disabled people in Britain should have full opportunities and choices to improve their quality of life, and will be respected and included as equal members of society.”
There was optimism at the time that Life Chances could secure the “transformation in disabled people’s life chances” that prime minister Tony Blair suggested was possible in his foreword to the report.
But 20 years on, three of the disabled people who advised the government on the report have told Disability News Service (DNS) that successive governments have failed to fulfil its promises.
Baroness [Jane] Campbell and Dr Sally Witcher were both members of the project’s advisory group, while Professor Peter Beresford was a member of its independent living expert group.
Dr Witcher said the Life Chances report had brought “cause for hope”, but that reading it 20 years on showed “how far backwards we’ve gone”.
She told DNS: “In 2025 we emphatically do not have full opportunities and choices to improve our quality of life. We are not respected as equal members of society. Far from it.”
At the time it was published, she said, she could not remember any other report “being received with such enthusiasm by disabled people and their organisations”.
Her enthusiasm for the report led to her applying for, and securing, the role of deputy director of Labour’s new Office for Disability Issues, which was tasked with rolling out the recommendations across government.
But she said people who were disabled, sick, or both, were now, 20 years on, “under siege”.
She said Labour had continued the previous governments’ attacks on benefits and public services, while the disabled population “continues to swell as failure to act on Covid safety takes an ever-higher toll on the nation’s public and economic health”.
She said: “We are not responsible for long-term government and economic failure. It’s not our fault we’re disabled, sick, or both.
“Do governments, including this one, seriously think anyone would choose destitution if they had any real choice?”
Dr Witcher appealed to the new government not to launch another 20-year strategy, as “strategy after strategy” had failed to deliver “lasting positive change”, but instead to work with disabled people to “assist us to live and stop making our lives ever more impossible”.
Professor Beresford said it was not difficult to see the way successive governments had failed to implement Life Chances as “a huge betrayal”, which had been led “from the front” by politicians.
He said: “Governments of all colours since have been determined to attack disabled people and treat us as fraudulent.
“Life Chances was an integrated policy, led by disabled people and true in spirit to the aims of the disabled people’s movement with its commitment to truly independent living and a national network of disabled people-led organisations.
“Sadly, its grasp fell far short of its reach.”
He said the continuing attacks on disabled people and disability benefits over the last two decades “constitute a crime no less than the hated pre-war poor law.
“This, together with the failure to prioritise social care and disabled people’s rights and involvement, continue to besmirch our politics and any claim to challenging disability discrimination.”
Baroness Campbell said she found it “deeply disappointing” that none of the goals laid out in the report had been achieved.
She said: “In terms of living independently in one’s own home, we were promised a CIL-type organisation in every area of England.
“Such local organisations would have gone some way to help prevent such a monumental crisis in social care for working-age disabled adults.”
She said disabled adults were now facing the prospect of leaving work or being forced into residential care “because they cannot afford to pay for essential care and support to remain independent citizens in the community, once provided by local authorities”.
She said: “All this government can offer since coming to power is yet another independent commission on the issue, which won’t report fully on proposals until 2028.
“This will be the fifth time I have been involved in a government exercise to reform our failing social care system.
“I really can’t face going around the same roundabout, with the same outcomes, only to be told the investment costs too much.”
The message being sent to disabled people, she said, was that “only the fit and able deserve our investment; all others can wait, yet again”.
Baroness Campbell added: “Short-term plasters or delaying tactics such as this one are akin to throwing good money after bad.
“When is this government and opposition going to understand that by investing in disabled and older citizens, savings will be made within the healthcare and welfare benefits systems in the longer-term.”
Asked to respond to the failure to produce the change the Labour government of the time had hoped for from the report, and whether the new government would try again with a new strategy to achieve this change, a UK government spokesperson said: “Nobody deserves to be treated unfairly because of their disability and we remain focused on championing the rights of all disabled people.
“That’s why we are increasing funding to allow disabled people to stay in their homes, boosting the carer’s allowance, and working with disabled people and their representative organisations to break down barriers which prevent individuals from being fully respected and included in society.”
The increased funding relates to the extra £86 million for the disabled facilities grant scheme – which helps councils fund access improvements to disabled people’s homes – which brings total government spending on the programme for 2024-25 to £711 million and will support about 7,800 more adaptations.
16 January 2025
‘Jaw-dropping’ evidence from CQC bosses on safety and IT failures shocks MPs
The care regulator has admitted to shocked MPs that many service-users, relatives and care staff who have reported safeguarding concerns about a care home or hospital may still be waiting for a response five months later.
The Care Quality Commission’s outgoing chair and its new chief executive were giving evidence about the under-fire regulator’s work to the Commons health and social care committee yesterday (Wednesday).
The commission’s chief executive, Sir Julian Hartley, had been asked by disabled Labour MP Jen Craft if the regulator had the capacity to deal with the backlogs it faced in registering new providers and dealing with safeguarding reports.
He said that nearly a third (29 per cent) of new providers seeking to register with the Care Quality Commission (CQC) were waiting more than the 10-week target.
But he also told Craft that the backlog in dealing with “notifications and information of concern” was “another key priority”*.
He said this related to health and care providers “who notify us of major issues and incidents and changes” but also to “people [who] contact the CQC with major issues of concern”.
Craft said: “There’s a potential there for quite significant safeguarding issues around people flagging things early on.”
Sir Julian replied: “Exactly”.
He said there was currently a backlog of about 5,000 such concerns.
Craft said it felt as though “at the moment there is a potential for [the system of dealing with concerns] to go very badly wrong for individuals and for their families”.
Asked by Craft for the longest that people were waiting for CQC to respond to such concerns, Sir Julian said the “oldest case with no action” was from 19 August last year.
Asked if that was someone who had reported a concern and had not received a response from CQC, he said: “I believe so.”
Craft told him: “You can appreciate the level of shock that I think we felt on that.”
Sir Julian and Ian Dilks, the outgoing chair, also told the committee that the flawed IT system introduced by CQC towards the end of 2023 meant many assessment reports drafted by inspectors could not be published because they were “stuck” in the system and could not be accessed by staff.
Andrew George, a Liberal Democrat member of the committee, said his “shocked” colleagues’ “jaws were on the floor when we heard this”.
Sir Julian said he did not disagree and had “immediately” commissioned an “urgent” independent review by an IT expert to understand “what had gone wrong and why” when he heard what was happening.
The evidence session followed the publication last October of the final report into CQC’s effectiveness by Dr Penny Dash, which found an “urgent need” for a rapid turnaround in the way CQC operated.
It found that, over the last five years, the proportion of health and care settings that had never received a rating had risen from 13 per cent to 19 per cent, while the average age of a rating (the time since it was published) had almost doubled, from two years in 2020 to three years and 11 months in 2024.
In response to a question from the committee’s Liberal Democrat chair, Layla Moran, Sir Julian appeared to accept that, three months on from the report’s publication, the regulator could still not guarantee that the care homes, hospitals and other settings it inspects were safe.
After Moran asked if “patients and families” can be sure that “the care home their mother is in or the hospital their child is being treated in” were safe as a result of CQC’s inspections, Sir Julian said the Dash review “was very clear that poor operational performance is impacting our ability to ensure that health and social care services provide people with safe, effective, compassionate and high quality care”.
And he said there were “multiple issues that need urgent resolution”.
When asked by Moran for a “yes or no” answer on safety, he said: “We’re not delivering for people. I’m sorry I went round the houses on that.”
He said later that the regulator “had to get back to doing more assessments” and that it needed to “speed up registrations”.
Dilks, who was appointed three years ago, apologised for the failings exposed by the Dash review and said CQC had “not done what it should have been doing over a period of time, but most particularly over the last year to 18 months”.
He said: “I would love to be sitting here saying, as the outgoing chair, that this organisation is in a much better shape than everybody thought it was, and I can’t say that, for which I am personally very sorry.”
He also told the committee that he had not had regular meetings with the health and social care secretary or the relevant minister under the previous two governments, which Moran said after the meeting was “incomprehensible”.
Dilks said CQC had decided it needed to change in 2018, and had commissioned consultants two years later.
It then decided in 2021 to carry out “a much more ambitious strategy”.
But it was not until the end of 2023, when new technology was being deployed, “that the scale of the problems really became obvious”.
He said that some of the strategic decisions were “not the right decisions”, the strategy was “too ambitious”, the technology failed to “deliver”, and CQC failed to “engage well enough” at the beginning of the process with its own staff.
*Longcare Survivors: The Biography of a Care Scandal, by John Pring, editor of DNS, was published in 2011 and is available through the DNS website. It investigates the horrific abuse of adults with learning difficulties that took place at two residential homes in south Buckinghamshire in the 1980s and early 1990s, and how the repeated failings of the inspection and regulation system allowed the abuse to continue for so long.
16 January 2025
Minister agrees to cross-party talks on strengthening rights for disabled renters
The government has agreed to cross-party talks on strengthening the law so that landlords would have to allow “reasonable” adaptations to the homes of disabled renters.
Ministers had refused on Tuesday to back two separate attempts – by Green and Liberal Democrat MPs – to strengthen the renters’ rights bill in favour of disabled renters.
But housing and planning minister Matthew Pennycook did agree to a cross-party meeting to discuss the concerns of MPs who have highlighted how many disabled people in rented homes are faced with landlords who refuse to allow them to install adaptations such as grab rails, ramps or accessible worktops in the kitchen.
The meeting will take place before the bill begins its progress through the House of Lords.
Carla Denyer, the Green party co-leader, had proposed an amendment to the bill that would have forced landlords to give permission for home adaptations where the local council has carried out a home assessment and recommended an adaptation, if it would be considered a reasonable adjustment under the Equality Act.
Gideon Amos, the Liberal Democrat housing and planning spokesperson, had put forward a similar amendment to the bill.
Denyer told fellow MPs on Tuesday that the Equality and Human Rights Commission had found that one in three disabled people in the private rented sector lived in unsuitable accommodation, while a government survey had shown that 44 per cent of private landlords would not rent to someone who required adaptations to the property.
She said: “My amendment seeks to ensure that, if all tenants can put up shelves, disabled tenants should be allowed to put up grab rails.”
Denyer said the government had argued that the issue was already covered by the Equality Act, but she said landlords were still refusing requests, while the “hassle and delay in appealing an adaptation refusal, given the major backlog in the courts, makes it prohibitive for many and unfairly puts the onus on the tenant”.
Amos told MPs that his friend and constituent, Mike Godleman, who was disabled, had died “while recovering from major surgery and under the threat of a no-fault eviction notice, for no reason he could possibly work out”.
He said the party’s proposed amendment to the bill was partly in his memory.
Former Labour leader Jeremy Corbyn – now an independent MP – also backed Denyer’s amendment, which he said had been “widely supported” by MPs and would meet an “important and genuine need across the country”.
It was also supported by former Labour chancellor John McDonnell, currently sitting as an independent, who said he hoped the government would be able to agree an amendment that would “satisfy all concerned” if there were further discussions.
Labour’s Florence Eshalomi, who chairs the Commons housing, communities and local government committee, called on the government to address the issue.
She said: “It is not fair that disabled tenants end up with reduced access to their own homes.
“The government are rightly looking at making it easier for disabled people to thrive in the workplace, but what is the point of someone thriving if they do not even have an adequate home or housing?”
She added: “Can any of us imagine being unable to have a shower in our own flat because the landlord refuses to make the necessary adaptations, or trying to cook in a kitchen when we cannot even reach the worktops?
“None of us would want to live in such conditions, yet that is the reality for many disabled people in the private rented sector in 2025 in the UK.
“People face such issues on a daily basis, with more challenges and blockages when trying to get private landlords to address them.”
But Pennycook told MPs that the Equality Act “already provides that landlords cannot unreasonably refuse a request for reasonable adjustments to a disabled person’s home”.
He said the bill’s abolition of no-fault evictions would “remove the threat of retaliatory eviction, empowering tenants to request the home adaptations they need and to complain if their requests are unreasonably refused”, while a new ombudsman would “have strong powers to put things right for tenants where their landlord has failed to resolve a legitimate complaint”.
But he promised the government would continue to consider “what more we may need to do to ensure that requests for reasonable adjustments cannot be unreasonably refused, including those recommended by local authority home assessments”.
And he promised a cross-party meeting to discuss the issue, and Denyer’s amendment, before the Lords began to debate the bill.
Afterwards, Denyer welcomed the minister’s offer to hold a meeting.
She said: “I’m really pleased that the minister has agreed to meet with me to discuss my renters’ rights bill amendment to give disabled people the right to adapt their home to meet their needs.
“I’m not counting any chickens yet, but this is a potential big win for all those who campaigned on this, and I will continue to push this forward.”
The bill, which the Labour government says will “transform the experience of private renting in England”, passed its third reading by 440 votes to 111, and will now be debated in the Lords in the coming months.
Pennycook said the bill would “modernise the regulation of our country’s insecure and unjust private rented sector, levelling decisively the playing field between landlord and tenant” and would “empower renters by providing them with greater security, rights and protections so that they can stay in their homes for longer, build lives in their communities and avoid the risk of homelessness”.
16 January 2025
John Evans: Death of independent living pioneer leaves ‘massive gap’ and vital legacy
One of the founders of the UK’s independent living movement, John Evans, who was driven by a determination to ensure that disabled people could take control of their own lives, has died.
Since he became disabled in an accident at the age of 25, which left him needing 24-hour support, he had devoted his life to advocating for independent living.
Independent living was, he said, “a philosophy and practice of life” and “a basic human right”, and he spent nearly 50 years freeing himself from the restrictions of residential care and then supporting other disabled people to do the same.
He died early on Monday afternoon.
Even after his diagnosis with terminal cancer in September 2018, he had pledged to devote the time he had left to trying to save the independent living movement in the face of government-imposed austerity.
He told an event in April 2019 that was held to celebrate his contribution to the movement over the previous 40 years: “It is not going to be easy but we have to do it, to enable disabled people to continue to have choice and control.”
The independent living movement was, as he told Disability News Service in 2023, “too precious to lose”.
He was born in Swansea in 1950 – his wife described him this week as “a very proud Welshman” – and before he became disabled at the age of 25, he had travelled widely and helped set up a peace project in Jerusalem, before becoming disabled after an accident while living with a group of peace activists in the US state of New Mexico.
When he returned home – inspired by his contact with the US independent living movement in California – he spent time at Stoke Mandeville hospital before attempting to live independently in a cottage in the New Forest, until his relationship with his girlfriend, his main carer, broke down in 1978 after almost two years.
He was forced to move to a Leonard Cheshire residential home in Hampshire, an idea that “terrified” him.
He said in 2016: “My feeling from the beginning when I entered this home was that I was not going to spend the rest of my life there.
“I was laughed at because nobody else thought anything different was possible.
“I was determined to prove them wrong. I knew that there had to be a way.”
There was. He and fellow residents set up Project 81, which was aimed at securing their escape into their own homes by 1981, the UN international year of disabled people.
They eventually achieved their aim by employing their own personal assistants, with council funding, and he moved into a flat in 1983.
He said many years later: “There was no community support for people like myself at that time, so we wanted to create our own.
“Once funding was agreed for me, the world was my oyster. I was free to organise my life in the way I wanted.”
He helped set up Hampshire Centre for Independent Living, and in 1989 co-founded an independent living committee to push for legislation that would make it easier for other disabled people to live independently with funds from their local authority.
In a short film he co-produced in 2023 with his wife, Jana, he explained how the committee’s work helped pave the way for the introduction of direct payments through the Direct Payments Act in 1996, and the foundation of the National Centre for Independent Living.
He was awarded an OBE in 2001 for his services to disability rights and independent living.
Evans promoted the independent living movement across Europe through the European Network on Independent Living, of which he was president for 10 years, while he also served on the board of the European Disability Forum.
He always stressed that what he achieved had been in collaboration with other disabled people.
“Independent living is the cooperation, networking and collective working together of disabled people in order to be able to achieve our ultimate goals of being included in society,” he said in 2003, at the launch of the European year of disabled people.
He fought for years to persuade the government to incorporate article 19 of the UN Convention on the Rights of Persons with Disabilities – the right to independent living – into UK law, something he said would “transform everything”.
Over the last decade and more, he continued to speak out to promote the principles of independent living and co-production, and the damage caused by Brexit to the availability of personal assistants.
In 2013, he spoke about the coalition government’s plans to close the Independent Living Fund (ILF), and told a parliamentary meeting that the right to independent living needed to be enshrined in law, and should be viewed by the government as a “treasure” to be “celebrated and not taken away from us”.
The previous year, as an ILF user himself, he told another parliamentary meeting how he feared being forced back into residential care after escaping the Leonard Cheshire home: “My biggest fear ever since that day has been will I ever return to that. Right now it is looking like a reality.”
In 2016, he warned that Brexit meant disabled people risked losing access to European Union legislation and directives “which have protected our rights for the last 20 years”, as well as losing access to European funding.
He said that in 33 years of employing personal assistants, he had employed people from 12 EU member states, an option that Brexit was putting at risk.
Evans said in 2003 that it was the experience of living in an institution that inspired him “to fight and devote my life to finding an alternative”.
“Such freedom of spirit is born from removing the chains of imprisonment,” he said.
“This kind of experience is unforgettable and enough to fire me up in our fight for freedom.”
His wife, Jana Bleckmann-Evans, told DNS yesterday (Wednesday): “He fought for the life he loved so much for as long as he could, but in the end, he realised that there was no more energy left and that he had to let go.
“I find great comfort in the fact that he was in control of his life until literally his last breath.
“He looked comfortable and at ease when he passed over, and he was surrounded by warmth and love.
“John leaves a massive gap in my life as well as in the lives of his family, his friends, colleagues, allies and fellow freedom-fighters.
“The condolences that have started to pour in show me just how massive his legacy is – as an independent living activist and as the amazing human being that he was, loving, caring, clever, passionate, thoughtful and simply wonderful.
“I will miss him forever.”
16 January 2025
Other disability-related stories covered by mainstream media this week
The crisis in special educational needs and disabilities in England risks creating a “lost generation” of children, while putting “almost half” of all councils with an education remit in danger of bankruptcy within 15 months, parliament’s spending watchdog has warned. MPs on the public accounts committee expressed frustration with the government’s lack of progress in resolving the crisis, and complained their inquiry had found “no sense of urgency” among officials: https://www.theguardian.com/education/2025/jan/15/send-crisis-in-england-risks-creating-lost-generation-of-children
Benefit claimants are being forced to wait more than three months for reviews on decisions, DWP figures have revealed. Departmental data shows the average time for mandatory reconsideration of benefit decisions rose to 71 working days in 2024, more than doubling between December 2023 and July 2024. With weekends factored in, this is a wait of 99 days on average: https://www.independent.co.uk/news/uk/home-news/dwp-benefit-delay-appeal-mandatory-reconsideration-b2676419.html
Charities providing specialist care to thousands of adults with learning difficulties and autistic adults claim they are having to “evict” residents to avoid insolvency because of tax and wage rises and local authority funding cuts. Non-profit providers say their work is in a “state of acute precarity” with many preparing to cut services, close doors to new residents, and effectively evict tenants because the fees councils pay no longer meet the cost of care: https://www.theguardian.com/society/2025/jan/14/charities-forced-to-evict-adults-in-their-care-to-stay-solvent-survey-finds
16 January 2025
News provided by John Pring at www.disabilitynewsservice.com
