Disability Rights UK newsletter

Disability Rights UK newsletter –

‘Waking watch’ charges hit Disabled residents

Shocking numbers of leaseholders are having to invest in ‘waking watch’ schemes in place to protect Disabled residents who cannot self-evacuate in the event of fire.

A waking watch is when a person patrols all floors of a building to give warning in case of fire. Since the Grenfell Tower fire, waking watches are regularly used in buildings that are high risk, with costs paid by leaseholders.

In some buildings this is as much as £11,000 a month, so many blocks are lobbying for them to be withdrawn but are finding they cannot get permission if there is a resident in the building who is considered to be at risk.

Claddag, the Disabled leaseholders group said: “As leaseholders ourselves, we share the enormous financial and emotional pressure placed on us by the building safety crisis. The cost of requirements like waking watch is financially damaging for us all, disabled or otherwise.

“1 in 5 of us are disabled so it is highly likely that at least one disabled person lives in every block of flats around the country. Does this mean that waking watch is needed in every general needs housing development in the UK? Clearly not. So this haphazard and misguided advice needs to stop.

“One of our ‘key asks is for the Government to ensure that any costs associated with a disabled person’s safety are taken out of the hands of leaseholders and should be centrally funded. We fear resentment and hostility towards individuals, blamed for additional costs in the service charge.”

Claddag and Disability Rights UK, have been campaigning for Disabled people who live in flats to have personal emergency evacuation plans (PEEPs). However, we do not believe that imposing waking watch is the correct approach.

This week, Claddag has published advice with expert input to help leaseholders to challenge refusals to remove or reduce waking watch due to the presence of a person who cannot self-evacuate.

Twitter’s new design criticised for being less accessible

Twitter has come under fire for launching a new design, with a bespoke font and high colour contrast after the changes caused users to suffer headaches.

The changes were designed to clean up “visual clutter”. But many people with accessibility needs, especially those with processing and visual impairments, deluged the company with comments to say they found it confusing, hard to read and too bright.

Twitter responded to say: “We’re making contrast changes on all buttons to make them easier on the eyes because you told us the new look is uncomfortable for people with sensory sensitivities.”

“We’ve identified issues with the Chirp font for Windows users and are actively working on a fix.”

Twitter’s Head of Branding, Derrit DeRouen said back in January that a new font, designed, by Swiss type foundry Grilli, was being introduced “to improve how we convey emotion and imperfection” – and the widely used standard typeface Helvetica was “not up for the job”.

DR UK’s Media and Communications Manager Anna Morell said: “Social media and communications companies need to remember that accessibility and substance must always come before style.”

NICE withdraws landmark ME/CFS guidance

The National Institute for Health and Care Excellence (NICE) has withdrawn long-awaited landmark guidance on ME at the last minute after it came under pressure from medical groups.

Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a hidden disability thought to affect over a quarter of a million people in the UK. The condition results in pain, brain fog, sensory overwhelm, and a persistent loss of energy, frequently resulting in patients needing to take to bed to rest for long periods. It is poorly understood, with no recognised cure, and with very little offered to patients in the way of treatment.

The guidance had been welcomed by patient groups and charities representing people with the condition, as it set out that the condition is a medical illness, and not a psychological problem, as some people believe. The guidance also withdrew support for Graded Exercise Therapy (GET) – one of the few interventions offered as a form of treatment. GET is in essence incrementally increased exercise, which many patients feel makes their impairments and energy levels worse, not better; and  withdrew support for Cognitive Behavioural Therapy (CBT), the psychological talking therapy which has also been offered as a treatment.

Some doctors and medical groups have argued that these two treatments are the only evidence-based ones for the condition, but patients and support groups fiercely criticise their use, citing lived experience, and opposing evidence that says that there is a poor quality clinical evidence base underlying results for GET for ME.

NICE said: “It has become apparent that a number of professional groups are unwilling to support the guidelines.”

A spokesperson for the Royal College of Paediatrics and Child Health said it was “very pleased” about the pause. They said: “we look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care”.

Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME, said: “Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline… It is difficult to say where we go from here. There are some amongst the charities and patient groups that are utterly opposed to CBT and GET, and so compromise and consensus may be difficult to achieve.”

DR UK’s Media and Communications Manager Anna Morell said: “This is a significant, and much overlooked condition. As with other hidden disabilities, people with ME struggle to be heard and effectively diagnosed, and are too often disbelieved. The publication of this guidance has been delayed before due to the huge amount of comments received in response to the consultation. Dr Miller is right – there is nothing beyond CBT and GET. But to rely on them as curative, when the groundswell of evidence from patients points to the contrary, is as effective as the old medieval catch-all of prescribing a course of leeches.

“As long as there is a reluctance to fund and undertake proper, robust research into this debilitating condition, there will be no hope of finding effective treatments. The establishment also needs to listen to those who endure the symptoms of this condition day in, day out. They know what works for them and what doesn’t.

“The further delaying of this guidance is a suckerpunch to people who are already, quite literally, flat on our backs.”

A new date for the release of the guidance has yet to be set.

Wembley commits to independent review of Euros after disabled fan attacks

Wembley Stadium has committed to holding an independent review led by Baroness Casey of Blackstock into the violence at this summer’s  UEFA European Football Championship which saw Disabled people physically attacked after accessible entrances to the Stadium were stormed by ticketless fans.

Calling the scenes “shocking and appalling” and those who contributed to them “yobs”, a Wembley spokesperson told DR UK that the Stadium management “will be looking to take specific action on the disability access entrances and are currently exploring the options for a structural change to these entrances at all of our general admission turnstiles.”

They went on: “We will of course consult with our disabled fans before making any structural changes.”

Government clarifies advice on child Covid vaccines

In response to queries from parents of Disabled children who have not yet been contacted about vaccines, the Government has reiterated advice from the Joint Committee on Vaccination and Immunisation.

JCVI advice on vaccinations for children (12-15):

  • The Government has accepted and is following JCVI advice published on 19 July. The JCVI advice is that children and young people aged 12 years and over with specific underlying health conditions that put them at risk of serious outcomes COVID-19 should be offered COVID-19 vaccination.
  • The JCVI advice sets out that at the current time, children aged 12 to 15 years of age with severe neuro-disabilities, Down’s Syndrome, underlying conditions resulting in immunosuppression and those with profound and multiple learning disabilities (PMLD), severe learning disabilities or who are on the learning disability register are considered by the JCVI to be at increased risk for serious outcomes from COVID-19.
  • JCVI has advised that children and young people aged 12 years and over who are household contacts of persons (adults or children) who are immunosuppressed should also be offered COVID-19 vaccination.
  • All eligible 12-15 year olds should have been offered a first dose before they return to school in September. Vaccinations are expected to start from w/c 23 August, with as many invitations as possible sent out in advance of this.
  • The NHS will identify the eligible children and they (or their parents/carers) will be contacted directly. If a family believes their child fits the criteria and there has been no contact by end of August then the family/carer should contact their GP to check eligibility.
  • NHS England has sent out guidance to the health and social care system on how to roll out this new advice. The guidance is available here: C1355 next steps following updated JCVI guidance in relation to COVID-19 vaccinations for children and young people (england.nhs.uk)

We the 15 launches at Paralympics

We the 15 is a global campaign aiming to start a global movement to transform the lives of the 1.2 billion people globally who have a disability – 15% of the population.

#WeThe15 has the support of 20 leading global organisations such as the International Paralympic Committee, World Health Organization (WHO), the United Nations, Invictus Games and Special Olympics. They have joined forces for the first time to call for change. Launching at the Tokyo 2020 Paralympic Games, WeThe15 is a campaign focussed on empowering and advancing the lives of people with disabilities. DR UK supports the campaign, which has much in common with our We Belong campaign aims.

Watch the launch video 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

Join our conversation on assisted dying

On 1 September between 5.30pm and 7pm, Disability Rights UK is hosting a conversation on assisted dying to enable Disabled people to listen to a range of views from prominent Disabled activists.

Speakers will include:

  • Baroness Jane Campbell
  • Phil Friend
  • Stephen Duckworth
  • Tom Shakespeare

Attendees will be able to listen to the deeply held convictions on both sides of this debate and to ask questions and make comments. With a Bill in the House of Lords and one planned in the Scottish Parliament, discussion of these complex issues is vital.

Please let us know if you require BSL and/or captioning so we can ensure group discussions are accessible.

Book hereFor Access Requirements please email: chelsey.tredgold@disabilityrightsuk.org

DR UK is developing a new website

We’re working on our new website, ready for a launch in 2022.

As part of the project we want to recruit a group of users with a wide range of experiences to help test the new website throughout different stages of development. This could include looking at design ideas or testing the navigation or accessibility of the new website.

You would be expected to take part in one to one and group interviews with Disability Rights UK staff and staff from our chosen company creating the website. These would be timed to fit in with different stages of development of the website and would be communicated to you in advance in order to ensure availability.

To show your interest in taking part, please complete this form.

New Passenger Assistance app  

The new Passenger Assistance app, which takes the time and fuss out of requesting assistance when you want to travel, was released in May. We’ve heard of many people having successful journeys using the app. However, if you’re still unsure about it or still have questions, here’s a quick rundown on all there is to know.

How does it make things easier?  

The app aims to make the whole process of requesting assistance quicker and smoother. You no longer need to spend time on the phone during your busy day; the app allows you to request assistance in a few taps. Setting up a profile also means you don’t have to repeat your accessibility needs each time you request assistance. You can even also add an optional profile photo to make it easier for station staff to spot you.   

How does it work?  

  1. Download the Passenger Assistance app. Go to the App Store if you’re using an Apple device or Google Play Store if you’re using an Android device. Type ‘Passenger Assistance’ into the search bar. The app should appear. All you need to do is click download.
  2. Set up your profile and provide as much information as you’d like – you’re in control of your profile. Whatever your accessibility needs, there’s space for it all to be listed. Here’s a short tutorial on how to set up your profile https://youtu.be/iTvOOHGD5oM
  3. When you’re planning a journey, put in your travel details; where to/from and what day and time. In this way station staff will have all the details they need to make your journey run smoothly. Here’s short tutorial on requesting assistance for your journey https://youtu.be/MhEdU1DMwaw
  4. Send your request via the app. This will be sent directly to the train operator who will arrange assistance for you. The app will confirm your booking is confirmed. Then all you have to do is book your ticket and you’re on your way.

Throughout the creation of the app, Transreport have collaborated with disabled passengers, including running a workshop with us here at Disability Rights UK! They also have an accessibility panel, made up of people with a diverse range of accessibility needs who have been instrumental in shaping the way the app works today. The app was tested by disabled passengers and they are always looking for way to improve and update it in collaboration with disabled people.

Click here for more information about the Passenger Assistance app.

EHRC launches consultation on three-year plan

The Equality and Human Rights Commission (EHRC) has launched a consultation on its next three-year plan.

English and Welsh versions of its Strategic Plan are available, as well as an EasyRead version and a BSL explainer video. The public consultation is open until 23.59 on Thursday 30 September.

RAD survey

The Royal Association of Deaf People, is still seeking responses for its survey (with BSL accessible videos) aimed at gathering the views and experiences of young deaf people living in London – it’s quite a wide-ranging survey, with the hope that it will publish a report that it can share with relevant policymakers and politicians: https://www.surveymonkey.co.uk/r/NMLYR6X

DBC poll

There is still time to complete the Disability Benefits Consortium’s poll on legacy benefits. Read more about the survey, and the Government’s welfare Green Paper here.

Liberty Investigates survey

Liberty Investigates is running an anonymous survey to find out why victims of hate crime withdraw from police investigations. If you pulled out of a police investigation, they would love to hear from you. You can fill out the 10-minute survey here: https://www.smartsurvey.co.uk/s/HateCrimeLI/

Read our blogs

Rob Trent, one of DR UK’s Trustees, has written a blog on independent living and the current hostile environment towards Disabled people. Read it here.

Don’t forget your Social Care Activity Pack

Don’t forget you can download a new Get Yourself Active Social Care Activity Pack from the GYA website.

New keyworking resources for children

Health Education England e-Learning for Healthcare has released a new e-learning programme on keyworking services for children and young people with a learning disability, autism or both.

Keyworking services support children and young people who are at risk of admission, or have been admitted to a mental health hospital, and their families. This programme has been developed to support keyworking teams across England to understand the fundamentals that underpin keyworking, such as culture, values and co-production.

It is mandatory for all appointed keyworkers to complete this programme as part of their induction, in addition to participating in local and national skills-based training programmes.

You can find the resources here

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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Stratford, London E20 3BS
United Kingdom
0330 995 0400