Disability Rights UK Newsletter – 13/2/21

Grenfell measures slammed by Disability groups

Housing Minister Robert Jenrick has announced another £3.5 billion of funding to remove and replace unsafe cladding from towerblocks.

The announcement comes three and a half years after the Grenfell Tower disaster in which 72 people died, including Disabled people.

Leaseholder Disability action group CladDAG has accused the government of failing to do enough for Disabled residents in the wake of the disaster. It says that £15 billion is needed for the removal of cladding, which will result in the £3.5 billion becoming a lottery, and that the funding doesn’t cover flammable balconies, and missing firestopping in buildings.

It has also been critical of the government’s lack of impetus to put in place evacuation plans for Disabled people, and highlighted how the funding will only be given to buildings which are six storeys and taller, leaving Disabled residents living in the upper storeys of lower rise blocks at the same risk they ever were, and living in ongoing fear and anxiety about their safety in case of fire.

Robert Jenrick said: “We continue to take a safety-led approach and this funding will focus on the higher-rise buildings where the independent expert advisory panel tells us – time and again – the overwhelming majority of the safety risk lies, in line with the existing building safety fund and the anticipated scope of the new building safety regulator that we’re establishing and will shortly be legislating for.

“This will ensure that we end the cladding scandal in a way that is fair and generous to leaseholders.”

With regards to buildings with less than six storeys, he said: “The Government will develop a long-term scheme to protect leaseholders in this situation, with financial support for cladding remediation on buildings between four and six storeys.

“Under a long-term low-interest scheme, no leaseholder will ever pay more than £50 a month towards the removal of unsafe cladding, many far less. Taken together this means the Government is providing more than £5 billion including a further £3.5 billion announced today plus the significant cost of the very generous financing scheme which will run for many years to come to ensure all leaseholders in medium and high-rise blocks face no costs or very low costs if cladding remediation is needed.”

DR UK’s Head of Policy Fazilet Hadi said: “The government funding proposals aren’t enough to protect leaseholders. They don’t cover the full costs of removing cladding for those covered by the scheme and leave many leaseholders out completely. Disabled people are often on very low incomes and will not be able to shoulder the financial burden.

“The safety considerations affecting Disabled leaseholders, who wouldn’t be able to evacuate from buildings in the case of  fire aren’t addressed at all. This puts the lives of disabled people at risk. It is seriously affecting the mental health of Disabled leaseholders, forcing people to live in fear of fire and feeling unsafe in their own homes.”

Disabled people between 3 and 4 times more likely to die of Coronavirus – ONS

New data from the Office for National Statistics shows that Disabled people were at more than three times the risk of dying from Coronavirus than non-disabled people between January and November 2020.

The risk was 3.1 times greater for more-disabled men and 1.9 times greater for less-disabled men, compared to non-disabled men. Among women, the risk of death was 3.5 times greater for more-disabled women and 2.0 times greater for less-disabled women, compared to non-disabled women.

Disability status was self-reported as collected in the 2011 Census. Those who said in the census that their day-to-day activities were ‘limited a little’ or ‘limited a lot’ are referred to here as ‘less-disabled’ and ‘more-disabled’ respectively, whereas people reporting no limitation on their activities are referred to as ‘non-disabled’.

The ONS says that: “no single factor explains the considerably raised risk of death involving COVID-19 among disabled people. Place of residence, socio-economic and geographical circumstances, and pre-existing health all play a part. An important part of the raised risk is because disabled people are disproportionately exposed to a range of generally disadvantageous circumstances compared to non-disabled people.” Patterns in excess Coronavirus mortality risk experienced by disabled people remained largely unchanged between the first and second waves of the pandemic.”

The risk for Learning Disabled people was 3.7 times greater for both men and women.

DR UK’s Head of Policy Fazilet Hadi said: “It’s good that the ONS is recognising out loud that Disabled people face disadvantage across all aspects of life, and that they recognise the disproportionate loss of life of Disabled people during this pandemic. This information must feed into the National Strategy for Disabled People to level up life expectancy and day to day experience for Disabled people. Our lives matter. It is shocking and heartbreaking that so many of us have died during this pandemic.”

MPs back calls for Universal Credit uplift extension until April 2022

The Commons Work and Pensions Committee has said that the increase in Universal Credit, slated to end at the end of March this year, must be kept until April 2022 as the “bare minimum” and has warned against plans for a one-off payment to take its place.

The top-up, introduced at the start of the pandemic, is worth more than £1,000 a year.

The support from the cross-party group of MPs who make up the Committee comes after calls to keep the uplift from major welfare and Disability charities including Disability Rights UK, unions, the Labour Party, Citizens Advice, and Marcus Rashford, who has spearheaded the campaign to feed underprivileged school children throughout the pandemic.

Work and Pensions Minister Will Quince told the House of Commons that discussions “remained ongoing” with the Treasury. He went on to say that the Chancellor had a “proven record of stepping up to protect the poorest, the most vulnerable and disadvantaged in our country throughout this pandemic and I have no doubt he will continue to do so”.

DR UK’s Ken Butler said: “The Work and Pensions Committee has now joined other cross-party bodies including the APPG for Poverty and the Women and Equalities Select Committee in forcefully calling for the keeping and extending of the £20 per week uplift.

“Within the past week a group of leading health and care bodies and the Trussell Trust have added their voices.

“The evidence is clear – removing the uplift will sweep hundreds of thousands of families into poverty or even destitution.

“Those on legacy benefits, which includes over two million Disabled people, were not even included in the uplift.

“The cost of extending the uplift is less than 3% of the £280 billion figure for total spending on Coronavirus support measures this year. It is a price that must be paid.”

Read more on our website.

Blueprint for post-pandemic NHS and social care reform launched 

The Health and Social Care Secretary Matt Hancock has set out new proposals to bring health and care services closer together.

The measures, set out in a government White Paper, intend to modernise the legal framework, and make it less bureaucratic, more accountable and more joined up to address the needs of communities as a whole.

The tendering process introduced over a decade ago will be reduced, to allow staff to focus more on patient care than procurement processes. The Healthcare Safety Investigations Branch will be put permanently into law as a Statutory Body so it can continue to reduce risk and improve safety. A package of measures to deliver on specific needs in the social care sector will be introduced to improve oversight and accountability in the delivery of services through new assurance and data sharing measures in social care, update the legal framework to enable person-centred models of hospital discharge, and introduce improved powers for the Secretary of State to directly make payments to adult social care providers where required.

The Department for Health and Social Care says that the pandemic has shown the impact of inequalities on public health outcomes and the need for Government to act to help level up health across the country.

However, Disability groups are concerned the Paper will not go far enough on social care. Edel Harris, Chief Executive of the learning disability charity Mencap said: “There are huge benefits to further integration between the NHS and the provision of social care. However, this reform will backfire unless the crisis in social care is addressed now. Social care has been treated as the poor relation to the healthcare system for too long, and it needs to be placed on an equal footing before we embark on any reform.”

DR UK’s Fazilet Hadi said: “Bringing health bodies and Local Authorities together to plan services across local areas and tackle inequalities is a laudable aim, however without genuine co-production with Disabled people at the heart of the reform, and without increased investment in social care, there is a danger that this will just be a shuffling round of the deckchairs.”

People with mental health conditions £8.4k poorer than those without

The incomes of people with common mental disorders such as anxiety and depression are just two-thirds (68%) of those of people without such conditions according to a new Mental Health and Income Commission (MHIC) report.

The gap is equivalent to £8,400 per year.

The Commission has found that one in five people with mental health problems – equivalent to 3.7m people across the UK – say they have suffered workplace discrimination due to their condition, including being passed over for promotion or being made redundant.

The Commission says that the Government should adopt several emergency measures to help people with mental health problems stay in work during the pandemic, as well as long term changes to tackle the systemic employment issues which have driven the “mental health income gap”.

Read more on our website.

Partner of “distraught” ESA claimant says DWP drove him to his death

The DWP has been blamed for causing the death of a Disabled man whose partner had warned he was too ill to undergo an upcoming benefit assessment that had left him “distraught” and “devastated”, reports the Disability News Service.

It is just the latest death to be linked to ongoing and widespread flaws in the benefit system, following years of concerns raised by disabled activists and grieving relatives, and has concerning similarities to the death of Philippa Day.

Philip Pakree, who died on Boxing Day, had been told he probably needed a heart transplant, while he also had multiple mental health conditions, and had grown increasingly distressed as the date of the “fitness for work” re-assessment approached.

He was already claiming ESA, in recognition of the barriers he faced due to personality disorder, depression, anxiety, borderline schizophrenia, adjustment disorder, asthma, a serious heart condition, and a long history of self-harm and suicide attempts.

When he was first told, last October, that he would need to undergo a telephone work capability assessment (WCA), he had to be admitted to Royal Derby Hospital several days later with breathing difficulties and heart failure.

His partner, Elizabeth Nicholson, said: “There was a distinct downturn in his health. He told me: ‘They do this to me every time.’”

He was later told the assessment would take place on 4 December, but outsourcing giant Maximus – which carries out WCAs on behalf of the Government – eventually agreed to cancel it after Nicholson sent them a letter from his consultant cardiologist that detailed his multiple health conditions.

But just 19 days later, on 9 December, Maximus sent another letter to Pakree, telling him he would have to make himself available for a WCA, again by telephone because of the pandemic, on New Year’s Eve.

Ms. Nicholson, said: “Phil was nearly hysterical. It made his mental and physical health so poor it was beyond belief.

“He was devastated, he was absolutely devastated. He said he would be better off dead.

“He wasn’t sleeping. He was getting obsessed that people were talking about him and believed that DWP were part of the SS.”

She said she could see him “going down and down” as 31 December approached.

She called Maximus to beg the contractor to reconsider, but a call handler said her partner would have to take part in the assessment or it would “affect his benefits”, telling her: “It’s been delayed once, we are not delaying it again.”

Ms. Nicholson said the attitude of the call handler was lacking in empathy and understanding and “completely and utterly disgusting”.

They moved into a bungalow on 23 December, because the mobility problems caused by his heart condition meant he could no longer cope with the stairs in their house.

Ms. Nicholson said it was the imminent assessment, rather than moving, that caused the stress that killed him.

He told her on Christmas Day, the day before he died: “I hope I don’t wake up, because I don’t want this.”

Early on Boxing Day, she found that he had died in his sleep. He was 49 years old.

Although he is believed to have died of natural causes, she said: “As far as I am concerned, the DWP killed him.”

Ms. Nicholson said this week that the harassment her partner had faced over the WCA was the culmination of 18 months of problems with his disability benefits.

In August 2019, a paramedic working for another DWP private sector contractor, Capita – which was implicated in the death of Philippa Day – had produced an inaccurate and misleading report after he had attended a face-to-face PIP assessment.

Mr. Pakree had been receiving DLA for seven or eight years, receiving the higher rate for mobility, and the middle rate for care, after being given a lifetime award.

He described in his claim form how he experienced constant anxiety, paranoia, could not eat without support, had to stop two or three times for two or three minutes at a time to walk just 50 metres and could not use public transport “because of my fear of crowds or of misinterpreting conversations overheard which are not about me”, and how he “will not bother to eat unless encouraged to do so by someone else”.

But the Capita assessor awarded him zero points, leading to DWP finding him ineligible for PIP, a decision that was rubber-stamped in December 2019 after a mandatory reconsideration.

He had to wait until July last year for a tribunal to hear his appeal.

The tribunal found him entitled to PIP at the enhanced rate for both mobility and daily living, dismissing the findings of the Capita report and the conclusions of the DWP decision-maker, and instead awarding him 13 points for daily living and 14 points for mobility.

Ms. Nicholson said she was appalled at the way her partner had been treated by DWP over the last 18 months of his life.

She said: “I would like people to know that this is what is happening.

“It is my opinion the DWP are totally responsible for this and they have robbed us of a much-loved man.”Get Involved
Review of children’s social care – have your say

Special Needs Jungle’s Tania Tirraoro writes: “Last month, the long-awaited review of children’s social care was launched. It is being led by ‘social entrepreneur’, Josh McAlister, the Founder and Chief Executive of the charity, Frontline, a former Manchester secondary school teacher. Frontline was established “with a mission to create social change for children who do not have a safe or stable home, by developing excellent social work practice and leadership”.

“But the review must look not just at children in care, but also at Disabled children. As many parents of Disabled children know, it can be a battle, one often lost, to get a children’s social care assessment. I tried to get one for my youngest as part of the EHC assessment process. I failed. The Education, Health and Care Plan is all too often barely an education plan – the H and C are the stuff of dreams.

“As the anniversary of the first lockdown approaches, it will be almost that long since children who did qualify for social care support and respite services have seen any of it. The easements that came in with the Coronavirus Act removed legal duties for providing for children’s social care that weren’t restored until the end of September 2020.

“Most consultations start with a call for evidence. This one is a bit different. Before evidence, a “call for advice” has been put out:

‘It is a huge privilege to be leading the independent review of children’s social care. One of my first actions in leading this review is to start by listening. That’s why we’re starting the review process a bit differently with a ‘Call for Advice’ rather than the traditional ‘Call for Evidence’. The opportunity to submit evidence will come later but right now I need advice, and lots of it.
I want to use this Call for Advice for you to guide me on what I should be spending my first few weeks and months reading, how best to hear directly from children, young people and their families, who you think I should be talking to, and what questions I should be asking.
There’s lots that I don’t know so please share your advice generously. Your response will help to shape the very start of the review and ensure that it begins in the most informed way possible to improve outcomes for children, young people and their families…
We also have ambitious plans to engage thousands of voices in the review process so watch this space.’
 Josh McAlister

“You can also send documents you’d like the review team to read, and he pledges to read every response submitted. You can read more about the review and sign up or for updates here If you want to feed back to the call for advice, you can do that here.”

Read more on the Special Needs Jungle website.

Sign our letter to supermarkets

A consortium of charities including DR UK recently wrote to the UK’s leading supermarkets asking them to suspend delivery charges for online priority shopping slots, and to reduce minimum spends.

Now, individual supporters can add their name to this open letter online.

Help Test and Trace improve the COVID-19 testing experience for Autistic and  Learning Disabled people

Disability Rights UK and the Lived Experience Alliance are supporting NHS Test and Trace to conduct research into the experience and accessibility of getting a test for coronavirus (COVID-19) for Autistic and/or Learning Disabled people.

The research will involve speaking to researchers over the phone or by video call for no more than one hour. Alternatively, you can provide written feedback.

You can express interest in taking part in the research if you are Autistic and/or you have a Learning Disability. We’d like to hear your feedback whether or not you have experience of using the COVID-19 testing service.

If you support someone who is Autistic and/or has a Learning Disability and is unable to communicate directly, you may also register your interest; either to help an individual to participate in the research or to speak to researchers on their behalf.

To register your interest, fill in this form:  or you can contact NHSTTResearch@dhsc.gov.uk or call the DR UK enquiries line on 0330 995 0400 and we can arrange to register your interest over the phone.

Free resistance training bands

Wheelpower is offering Disabled people a free set of resistance training bands to help Disabled people keep fit throughout lockdown. Eligibility criteria apply.

For more details, go to the Wheelpower website.

Sense Sign School

The charity Sense is offering free taster sessions of British Sign Language delivered by email.

To sign up, and for more information, visit the Sense website.

Coronavirus vaccine guide for Learning Disabled people

Learning Disability England has worked with members and partners to write a guide for people and organisations that offer paid support to people with Learning Disabilities.

The guide helps them to prepare the people they support to make a decision about having the Coronavirus vaccine.

Access the guide on the Learning Disability England website.

National Strategy consultation petition

The National Federation of the Blind of the UK (NFBUK) has joined with nearly 20 other Disabled People’s Organisations to raise serious concerns about how the government consultation on the National Strategy for Disabled People has been developed and undertaken.

You can read its letter here (and read the large print version here).

Email sarahgayton@yahoo.co.uk if you would like your name added to the signatory list.

Paralympian Liz Johnson podcast

The East London Inclusive Enterprise Zone’s latest Inclusive Innovators podcast features Paralympian swimmer and ELIEZ member, Liz Johnson.

Listen on Soundcloud.

Disabled parking in London

Critical changes are needed to simplify disabled parking for London’s local authorities. London currently has 33 boroughs all with their own rules and regulations for disabled parking. This system is overly complicated for disabled people to navigate. Many parking bays do not even display the borough’s disabled parking policy. Moreover, public transport is often inaccessible, and many disabled people rely on a car to access NHS hospitals and other services.

The Covid-19 pandemic and lockdowns have highlighted and exposed the problems and challenges disabled people face to access goods and services and primary and secondary healthcare. Therefore, it is time to introduce a ‘standardised and compassionate’ disabled parking policy across London.

If you live in London, you can write to your MP to ask for free Blue Badge parking across London.

More details on the Action Network website.

RSE funding for Covid academic research

The Royal Society of Edinburgh (RSE), Scotland’s national academy, has announced new funding to help tackle one of the world’s most urgent challenges: the impact of Covid-19.

The grant will be available to researchers and academics whose work has been adversely affected by Covid-19.

The RSE Research Re-Boot (Covid-19 IMPACT) Research Grant – provides financial backing for academics of up to £25,000 to restart existing research or kick-start new work. The fund was created to support anyone whose work has been disproportionately impacted by Covid-19, and applications are particularly encouraged from one or more of the following groups: those who have taken on caring responsibilities due to Covid-19, Disabled, LGBTQIA+, Black, Asian and Minority Ethnic (BAME) and/or Early Career Researchers (ECRs).

The funding will help researchers who have been inhibited by travel restrictions across international borders to come together virtually with other experts in their field to improve our understanding of solutions for our shared climate future. The funding is available as part of the RSE and Scottish Funding Council (SFC) agreement.

Full details can be found on the RSE website.

Applications must be submitted by 3 March 2021.

Benefits training courses

DR UK is offering two essential online courses in partnership with the Benefits Training Company. Each course is run in two parts, using Zoom and facilitated by an experienced benefits trainer.

Introduction to Welfare Benefits will be held on 27 and 28 April. The course is aimed at professionals who work in advice or advocacy who need to know more about – or need a refresher on – changes to welfare benefits and social security.

  • Part 1: The structure of the system and the importance of health and disability benefits – Tuesday 27 April 9.45am – 12.45pm
  • Part 2: Universal Credit, the wider benefits system and maximising income – Wednesday 28 April 9.45am – 12.45pm

Please click here for more information and to book your place.

Preparing for an Appeal Tribunal will be held on 29 and 30 April. This course is aimed at professionals who work in advice or advocacy who need to know about how to prepare an Appeal Tribunal. A working knowledge of Personal Independence Payment and the Work Capability Assessment is assumed.

  • Part 1: Assessing the case, reviewing the DWP decision – Thursday 29 April 9.45am – 12.45pm
  • Part 2: Composing effective written submissions, preparing claimants for appeal hearings – Friday 30 April 9.45am – 12.45pm

Please click here for more information and to book your place.

These courses sell out fast so early booking is encouraged. Each course costs £112.50 + VAT per person for DR UK organisational members. After booking you will receive a Zoom link and supporting materials by email.

Anna Denham blogs about Sport England’s new strategy, Tackling Inequalities and ableist language

Take a look at the latest blog from Get Yourself Active team member Anna Denham who updates us on her thoughts on the new Sport England strategy, DR UK’s work on the Tackling Inequalities Fund with Sport England, and a new article about ableist language in the British Journal of Sports Medicine.

Read the blog here on the GYA website.

Inclusion job vacancy

Business In The Community is looking to hire an Inclusion Officer on a six month fixed-term contract. Applications must be received by 17 February.

Details here.

Tell us about your care

Disabled people and their families have suffered more than most during the current pandemic. The regulator for the NHS and care services in England – The Care Quality Commission (CQC) – have set up a webpage where Disabled people and their families can provide feedback directly, and anonymously to the CQC to help them plan future services that take the needs of Disabled people much more seriously.