Disability Rights UK Newsletter


News Round-up

DPOs call for reinstatement of infection control measures

A plethora of organisations, including DR UK, is calling on government to revise new guidance which effectively leaves Disabled Clinically Extremely Vulnerable (CEV) people without protection once lockdown fully eases on 19 July.

National Voices has written to the Prime Minister to urgently reinstate infection control measures to safeguard the lives of the four million people who are on the CEV list.

Guidance for CEV people has been released which tells them “to continue to take extra precautions to protect themselves. You are advised to follow the practical steps described [in the guidance] to minimise your risk of exposure to the virus.”

It continues: “Guidance on meeting family and friends has been updated, with a greater emphasis on personal responsibility.

“It is important that children attend school for their education, wellbeing, mental health and long-term development. Clinically extremely vulnerable pupils and students should have returned to their school or other educational setting…

“Where parents are concerned about their child’s attendance, they should speak to their child’s school about their concerns and discuss the protective measures that have been put in place to reduce the risk. They should also discuss other measures that can be put in place to ensure their children can regularly attend school.”

DR UK’s Head of Policy Fazilet Hadi said: “On the one hand, Government has recognised the clinical vulnerability of four million people, and yet on the other hand, it is telling them to take responsibility for themselves in the pandemic knowing full well that that will, in essence, mean most go back into shielding, but without the protections and support previously offered to them in terms of procurement of food, medicines and other essential supplies, and with levels of isolation detrimental to mental health. Many will be nervous about attending medical appointments too.

“For these four million people, and more, the risk of dying from COVID remains unacceptably high.

“The government’s reckless approach has been roundly criticised by scientists and doctors; it leaves CEV people to fend for themselves, viewing them as being outside of mainstream society.

“They are asked to take precautions, to be cautious, to avoid indoor spaces and not to meet people who haven’t been double vaccinated.

“Surely, in an ongoing pandemic, there should be measures that keep all of us safe.

“The situation for CEV children, who so often lack their own voice in the national conversation, needs special mention. Schools are risky environments for people with low immunity at the best of times. Without government explicitly issuing guidance to schools about how to keep children who shielded safe, parents are put in an impossible position where their instincts to keep their children off school may be pitted against what is legally recognised as truancy, which can land them in court.

“We have concerns about the blanket statement that schools are best placed to ensure their wellbeing, mental health and long-term development. 770,000 school refusing children, if they had a voice in government policy about this, would strongly disagree.”

Pandemic school absence stats raise child mental health questions

Last week’s Department for Education figures show 1.5 million children were off school, raising concerns about high numbers of children refusing school for mental health reasons.

About 840,000 pupils were off for Covid-related reasons and a further 630,000 were absent for other reasons. That is a quarter of secondary pupils and 15% of primary pupils in total.

The number of pupils absent from school has been growing rapidly over the past few weeks.

Kevin Courtney, joint General Secretary of the National Education Union, told the Commons Education Select Committee that some of the pupils absent for non-Covid reasons would be suffering from mental health issues while others might be avoiding school because of fear of failure after a year of disruption.

DR UK’s Head of Policy Fazilet Hadi said: “It has taken a pandemic for government to sit up and notice that there is a major problem with school attendance. Just over half these figures relate to Covid isolation protocols, but what about the other half?

“We know that there are around 770,000 persistent school refusers, many of whom will have made up last week’s figures.

“We also know that secondary school pupils are causing short term isolation periods by faking lateral flow tests with fruit juice, again to become school avoiders and refusers. For many, this isn’t joking around, it’s a desperate measure to avoid an environment which causes them active harm.

“We know that children kept off school by parents as sick, with genuine concerns for their children’s mental health, are frequently marked by schools as absent without permission – a state of affairs which can land parents in court and fined.

“Childhood poor mental health is often caused or exacerbated by a tickbox culture around SEND in schools which lack truly supportive environments with reasonable adjustments for ways of being such as autism, ADHD and other non-neurotypicality.

“Without a sea change in school culture, half of those absentees will continue to be failed. The government is talking about building back better for many areas of life in the UK. It’s time it started talking about building up better for children in schools with SEND.”

SEND policy must be co-produced with parents – DR UK

Children’s Minister Vicky Ford MP has said that existing legal entitlements for children and young people with SEND are under review, as part of the ongoing and long-awaited SEND Review.

The law was last changed in 2014 when SEND reforms created the Children and Families Act. Now, despite concerns that it’s not the law itself that’s the problem but local authority adherence to it, the long-overdue SEND Review appears to be about to shake up the legislation again.

Children’s Commissioner for England Rachel de Souza said: “The impact of the last year and a half on children’s lives has been enormous – not only bringing into focus the many generational problems facing young people, but multiplying and accelerating some of them.

“As we come out of the pandemic, this should be the moment to tackle them with best practice, new ideas and big ambitions. We owe it to children for the huge sacrifices they have made for us, despite them being at least risk of becoming ill.

“We must start with children and families placed at the heart of our thinking – designing systems around them so we can better achieve more integrated services that best meet their needs, and which give children the best opportunities to prepare for adulthood and live healthy and successful lives.

In order to do this, we need reform, both of children’s social care and the SEND system, and this reform needs to make sense as a whole.

“I don’t underestimate the challenges, but I believe that we can bring about reform by focusing first on what we can achieve. The SEND review, the Care Review and the Integrated Care System white paper are all important elements for making strong and lasting change and give us an opportunity to tackle some of the long-standing problems that have held back some children.”

DR UK’s Head of Policy Fazilet Hadi said: “We welcome the recognition that children and families must be at the heart of thinking, but to say we must be “focusing first on what we can achieve” rings alarm bells. What can be achieved has been woefully underestimated when it comes to SEND for decades. Policy has been unambitious and under-resourced. Surely what needs to come first is deep listening to those who know best – parents of SEND children, and SEND young people themselves. Co-design of policy is critical to it being a success.”

Read more about the SEND Review on Special Needs Jungle.

Disabled survivor of Grenfell Tower speaks out

The All Party Parliamentary Group on Disability has heard the harrowing and powerful testimony of a Disabled woman, Shakila ‘Flora’ Neda, who survived the Grenfell Tower fire due to her son carrying her down 23 smoke-filled floors.

Shakila’s husband died in the fire, staying to protect other Disabled residents, who sought shelter in their top floor flat. They were waiting for a rescue which never came. Shakila and her son are the only two eyewitnesses who survived from the top floor. Over 20 other people from the top floor died in the fire.

Shakila spoke with the support of Kimia Zabihyan, Advocate and Co-ordinator of Grenfell Next of Kin. She spoke of poor building safety and fire precautions and the lack of evacuation plans for Disabled residents.

The Parliamentary meeting was held on the topic of Personal Emergency Evacuation Plans (PEEPs) for Disabled people unable to self-evacuate. It was addressed by the Minister, Lord Greenhalgh, who is responsible for the current consultation on PEEPs which ends on 19 July. The consultation seeks to implement the Grenfell Tower Inquiry recommendations, which propose that building owners and managing agents be given a legal duty to produce PEEPs for those unable to self-evacuate. The Government was initially reluctant to implement this recommendation and an earlier consultation in 2020 was stopped by a judicial review.

The meeting also heard from fire safety expert, Elspeth Grant and campaigner, Sarah Rennie, co-founder of Claddag, the Leaseholder’s  Disability Action Group.

Elspeth and Sarah called for every Disabled resident unable to self-evacuate to have the right to a PEEP, to put the responsibility on the building owner and managing agent to alert residents to the importance of PEEPs and to ensure that there is a complaints process for Disabled people who were refused PEEPs or provided with an inadequate Plan. Sarah highlighted that there are currently 1.8 million people waiting for accessible housing.

Following the consultation, the Government will seek parliamentary approval for regulations on PEEPs.

Damning new MP report calls for end to long-term incarceration of people with autism and learning disabilities

Fresh calls from MPs to end the incarceration of over 2,000 people with autism and learning disabilities in long-term inpatient units have been made off the back of a new report by the Commons Health and Social Care Select Committee.

The failure to address poor treatment of people with autism and learning disabilities is a scandal, according to MPs calling for a ban on new long-term admissions to inpatient units.

The report highlights that most people stay in in-patient units for around six years, with many being “unable to live fulfilled lives…and… too often subject to treatment that is an affront to a civilised society”.

MPs are calling for greater community provision to end “intolerable treatment” including abusive physical restriction, long-term detention periods, and unacceptable distancing from loved ones.

The report says that in-patients are treated “as if their condition is an illness instead of a fundamental part of their identity… The tragic result of this fatal misunderstanding is that they often do then develop mental or physical illnesses which are used to justify their continued detention.”

MPs are calling for person-centred services; the closure of assessment and treatment units, which in theory are only supposed to be a bridging placement for people returning to the community, within two years; and any admissions to in-patient facilities to be for short stays, close to home.

The report goes on to say that “poor treatment of autistic people and people with learning disabilities has been a long-standing problem for the NHS and care system… The fact that these issues have not been resolved even a decade later is a scandal in its own right, quite separate to the original tragedy.”

DR UK’s Head of Policy Fazilet Hadi said: “We’ve heard these calls before. Now is the time for Government to take decisive action.”

Disabled fans injured at Euros cup final as fans storm stadium

DR UK is seeking urgent clarification about the events which led to ticketless fans overwhelming stadium security at Sunday’s EUFA European Cup Final, as they used Disabled access doors to rush the stadium in an attack planned on whatsapp groups.

Scott Furlong, father of Kian told The Guardian how serious problems began when a disabled access door was twice kicked in by stewards trying to eject ticketless fans. “The door smacked against my son’s legs. He was shocked and I was furious.

“Targeting disabled entrances just shows no compassion whatsoever. I don’t know what the stewards are paid, but I’m sure it wasn’t enough to deal with this lot.

“We’re hearing lots in the news about racism, but the discrimination in general was awful.”

Kian said: “I was a bit scared when they came through the door. Daddy was shouting at them because the door hit my legs. I think they are idiots.”

Tim Hiley, a wheelchair user at the match, told The Guardian that “all hell broke loose” as stewards tried to hold back dozens of ticketless fans at a disabled entrance. “Eventually they were overcome with the sheer size of the crowd and people started running in. It was almost like a scene from Game of Thrones.

“A poor young lad with his leg strapped up and on crutches was floored by the crowd, and then a steward got flattened while trying to prevent people both getting into the ground but getting near me and my friend.

“The security was abysmal. It was the first time I’ve ever felt unsafe at an event and Wembley has some serious questions to answer.”

DR UK CEO Kamran Mallick said: “It is deeply disturbing that Disabled fans were subjected to injurious physical assault at a national sporting venue.

“We will be seeking urgent clarification from Wembley about how this was allowed to happen.”

A spokesperson for the FA confirmed that a full investigation will be carried out.

Deputy Assistant Commissioner, Met Police, Jane Connors said that what happened in terms of the policing operation would be reviewed.

“Sharp rise” in DWP benefit death reviews “deeply concerning”

New figures show that the number of DWP internal reviews held when a person claiming benefits dies or comes to serious harm has sharply risen in the past two years.

The DWP has started 124 reviews since July 2019. 97 of the review cases involve people who have died.

It follows a BBC investigation into the scale of deaths earlier this year, which found at least 144 internal reviews were carried out between 2012 and 2019.

The latest figures were revealed in response to a Parliamentary question from Labour’s Shadow Secretary of State for Work and Pensions, Jonathan Reynolds MP.

Describing the “sharp rise” as “deeply concerning”, he called for an independent investigation.

“The investigation should examine the impact assessment process has on people’s mental health and what must be done to prevent future deaths,” he said.

Alex Kennedy, from the charity, Rethink Mental Illness, also called for change. “In any other public service, the tragic deaths of 97 people in the last two years would have triggered an urgent public investigation to seek answers and prevent more people coming to avoidable harm,” he said.

“But the current process is shrouded in secrecy, with little to no public accountability. For there to be confidence in the benefits system we need to see concrete evidence that the DWP is learning from these heart-breaking cases and implementing change.”

Dr Thérèse Coffey MP, Secretary of State at the DWP ruled out an independent inquiry while being questioned at the Work and Pensions Committee on 7 July, saying: “I don’t feel the need that we need to undertake that.”

Previous figures revealed by the BBC showed at least 144 internal reviews had been held over a period of more than seven years between February 2012 and July 2019.

The internal reviews were not routinely published and bereaved families were not routinely informed when they began.Read more here.

DWP to stop ‘cold-calling’ Disabled people to make low benefit ‘offers’

In response to a legal challenge by a Public Law Project client, a Disabled woman called ‘K’, the DWP has agreed to change its practice of pressuring Disabled benefits claimants into accepting less than they are legally entitled to.

K has spent more than a year trying to persuade the DWP to change their unlawful practice. Initially, the DWP flatly refused to do so, but the day before her claim for judicial review was to be heard in the High Court on 13 July, by way of a Consent Order, it agreed to amend its policies and guidance and settle the claim.

Evidence gathered over many months showed that Disabled benefits claimants who had appealed a DWP decision on their benefits were being called by the DWP and encouraged to accept ‘offers’ that were lower than their statutory entitlement.

DWP callers repeatedly telephoned claimants directly even when claimants had made clear that they had representatives who should have been contacted first.

People who were called were not told about their appeal rights. Read more here.

New report published on benefit reform

A new report, Reforming Benefits Decision-Making (PDF), has been published by a joint Administrative Justice Council (AJC) and JUSTICE Working Party.

The report considers initial Department for Work and Pensions decision-making, through to appeals, to ensure that the system works well for everyone, regardless of their health, their disabilities or their digital capability.

The AJC and JUSTICE say that: “Our vision is of a system that prioritises dignity and respect and that places the user at its heart: a procedurally fair, efficient, accessible and robust system that works well for everyone, regardless of their digital capability, their health, their disabilities or their vulnerabilities, and which provides claimants with the support they require.”

The report makes 44 recommendations aimed at improving the administrative and procedural aspects of the benefits system.

Ken Butler DR UK’s Welfare Rights and Policy Adviser said: “This is an excellent report and a much needed and welcome one. It recognises that the DWP’s decision-making process needs to be radically transformed, highlighting the need for reasonable adjustments and easements for Disabled people.

“In addition, it makes many informed recommendations that would ensure that Disabled people could obtain their correct benefit entitlements first time. The DWP should accept its conclusions and take action to implement its recommendations as speedily as possible.” Read more here.

Scrap six months campaign victory: fast-tracked access to benefits for people with terminal illness expanded

In response to the Scrap Six Months campaign led by the Motor Neurone Disease Association (MNDA) and Marie Curie, the Government has pledged to make it easier for people with a terminal illness to claim benefits using the Special Rules for Terminal Illness.

The Minister for Disabled People Justin Tomlinson has announced that the current Special Rules for Terminal Illness which “fast-track” benefit applications for those with a terminal diagnosis of six months is to be replaced with a new 12-month end of life definition.

The move is aimed at ensuring that people in the final year of their life will receive vital financial support quicker than they can do at present and at the highest rate through revised Special Rules. Read more here.

Freedom Day. Or is it?

Read DR UK CEO Kamran Mallick’s thoughts on the impacts of Freedom Day on Disabled people.

Blockbuster art exhibitions showcase Disabled artists

Four of the summer’s biggest art exhibitions in London this year are by Disabled artists. DR UK’s Media Manager Anna Morell takes a look at how Tate and the Royal Academy have tipped the ‘dead white men’ narrative this year in favour of more diverse voices. Read her blog here.

The Surrogate review

The debut full length feature film from American indie filmmaker Jeremy Hersh explores the difficult issues around surrogacy, parenting Disabled children, and right to life. DR UK’s Media Manager Anna Morell reviews the film here.


Our work capability assessment factsheet

The work capability assessment is very important for universal credit and central to employment and support allowance (ESA). Our factsheet F71 explains the work capability assessment in a detailed but simple way.

The work capability assessment has two parts.

The first part is the limited capability for work assessment. For universal credit, if you are found to have a limited capability for work, your work-related responsibilities will be limited. For ESA, if you are found to have a limited capability for work, you can stay on the benefit.

In each case, a points system is used to see how well you can carry out a range of activities. Each activity is divided into different ‘descriptors’, which explain related tasks of varying degrees of difficulty. You score points when you are not able to perform a task described safely, to an acceptable standard, as often as you need to and in a reasonable time. If you score 15 points, you qualify as having a limited capability for work. The descriptors and the points that you get from each are listed in the factsheet.

The second part is the limited capability for work-related activity assessment. If it is decided that you have a limited capability for work-related activity, no work-related responsibilities will apply to you and you will be entitled to a higher level of universal credit and/or ESA. The assessment has a list of descriptors, relating to both physical and mental functions. If you meet at least one of them, you will have a limited capability for work-related activity.

As well as explaining the two parts of the assessment, the factsheet also covers the following:

You can download the factsheet for free in word or pdf formats.

For a full list of all our other factsheets, visit the Disability Rights UK website.

Get Involved

APPG on Fire Safety – personal emergency evacuation plans

The next All Party Parliamentary Group (APPG) on Disability will be held jointly with the APPG on Fire Safety from 2-3pm on Monday 12 July. The session will be chaired by Sir David Amess MP.

The meeting will highlight the importance of the Government’s consultation on Personal Emergency Evacuation Plans for Disabled residents unable to self-evacuate from buildings.

The meeting will cover the government’s key proposals and have input from Disabled residents, as  to how the proposals need to be strengthened. The consultation closes on 19 July and it is vital that the views of Disabled People are heard (see next story below).

To attend the meeting, email kirosinghr@parliament.uk with ‘RSVP’ in the subject line.

Women and Equalities Committee survey

The Women and Equalities Committee is building a picture of how effectively stakeholder organisations believe the UK Government is engaging with them, and perceptions about the UK Government’s progress on the equality issues they care about. You can help by completing this stakeholder survey.

Disability Pride month

This month is Disability Pride month. If you or your Disabled People’s Organisation are running any related events or activities you would like us to share with our readership, email media@disabilityrightsuk.org

Are telephone and video appeal hearings working for Disabled people? Two new surveys launched

Islington People’s Rights has started its new IPR Justice project.

The new initiative is designed to influence policy and practice on welfare rights, as well as to provide additional capacity to represent clients at welfare benefits tribunals.

The focus of the project is those with disabilities, notably mental health related.

As part of the project, IPR Justice has launched two surveys aimed at gathering evidence of how the new ways the remote replacements to face to face appeal hearings are working. You can find out more and complete the surveys here.

Ask some World Questions on the BBC

Later this month the flagship BBC World Service programme, World Questions, will be focussing on disability rights around the world.

The discussion programme, which will be recorded on 27 July, will feature a panel of international Disabled activists, politicians and writers.

The BBC is looking for questioners from around the world (including here in the UK) to send in their questions to us. It will choose a spread of questions and ask those questioners to take part in the programme. Find out how to take part.

Bridge to Work programme evaluation: invitation to tender

Disability Rights UK is the learning partner for the Bridge to Work programme funded by City Bridge Trust. We are looking to commission an experienced evaluation consultant to design and implement an evaluation framework that will evaluate the five year Bridge to Work programme, which is about to enter its final year. The evaluation process should take a co-produced approach, including opportunities for the participants of the programme (Disabled young people) to input into the development of the final evaluation framework and the resulting outputs. The successful candidate(s) would be expected to start working on the commission in September 2021, with the final report due in December 2022. The Deadline to submit a tender is 10am on Monday 19 July. Read more or apply here.

Intersectionality job vacancy

Are you a D/deaf or Disabled person with lived experience of intersectionality? Are you passionate about social justice work and helping to create a strong, intersectional and inclusive Disabled people’s rights movement that leaves no one behind? Have you got experience in community work, advocacy, campaigning or activism, or working with Disabled or marginalised communities?

If yes then you may be interested in joining, in a paid capacity, Inclusion London’s With Us Project Intersectional Advisory Group which is developing and piloting ways to support Inclusion London and DDPOs to become more inclusive and intersectional in what they do. 

There will also be an exciting opportunity to input into the development of Inclusion London’s next three year strategic business plan, with the aim of ensuring intersectional work is embedded in all of Inclusion London’s ongoing work.

Closing date for applications is: 5pm on Monday 2 August 2021.

Living Options Devon job vacancy

Living Options Devon is looking for a new Deputy Chief Officer/Integrated Care Lead. Apply here. The deadline for applications is midday on Monday 12 July.

Shopmobility launches new website

ShopMobility UK, the nationwide network of charitable/local authority centres that loan out mobility scooters and wheelchairs for shopping and leisure activities, has recently become part of Driving Mobility – the nationwide charity, supported by the Department for Transport, which accredits assisted driving and mobility assessments centres. As part of its recent changes, it has launched a new website for easier access to information and membership services. Access the website here: www.shopmobilityuk.org

Benefits training courses

DR UK offers a range of 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

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 & disability benefits – Tuesday 20 July 9.45am – 12.45pm

Part 2: Universal Credit, the wider benefits system and maximising income – Wednesday 21 July 9.45am – 12.45pm

Click here for more information and to book your place.

Preparing for an Appeal Tribunal

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 – Wednesday 18 August 9.45am – 12.45pm

Part 2: Composing effective written submissions, preparing claimants for appeal hearings – Thursday 19 August 9.45am – 12.45pm

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.


Our helplines are operating as normal:

Personal Budgets Helpline

Disabled Students Helpline

Welfare Rights Helpline for Member Organisations

Disability Rights UK
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