Disability Rights UK Newsletter

Here’s the latest newsletter from Disability Rights UK

A message from our CEO

With the everyday challenges faced by Disabled people mounting perhaps a United Nation Convention on the rights of Disabled people feels a little distant and remote, but it isn’t.

If we want to build on the campaigning achievements of Disabled activists who fought for the Convention, making sure it is implemented in the UK is vital.

The UN is going to shine a spotlight on Disabled people in the UK. This is our opportunity to share raise issues including inadequate income, lack of social care, inaccessible housing and barriers to education and employment.

Disabled people can contribute evidence to a report, which will influence the issues that the UN will then raise with the UK Government.

We need to share our lived experience and research findings. We need to highlight where our lives are getting worse and where they are getting better. You don’t need to be an expert on the Convention – you just need your experiences, your knowledge and your examples of life as a Disabled person in the UK today.

Watch the launch event here and look out for Tara Flood giving the history and explaining the importance of the Convention for Disabled people.

If you want to read the United Nation Convention click here.

If you want to read the United Nations report on the record of the UK Government click here.

Please come and share your views at a zoom engagement event at 6pm on 17 November.

If you can’t make the event, you can still provide feedback to UNCRDP@inclusionlondon.org.uk by 22 November.

Disability Rights UK AGM 2021

We are delighted to invite you to our Annual General Meeting (AGM) on Wednesday 24 November from 1.30pm to 3.30pm.

Join us to hear about what we have done in the past year, how we responded to the pandemic and our plans for the future. Meet the Leadership Team in a panel session to hear about the challenges and opportunities facing Disabled people as well as being able to ask questions.

Please see our website for more information

News Round-up

A hundred people die fighting for terminal illness benefits

Around 100 people denied fast-tracked disability benefits for terminal illness died challenging the decision.

Currently, patients can access benefits more quickly if their doctors say they could die within six months – for example, if they give them a life expectancy of 5-12 months.

In July the Government said it will introduce a new 12-month end of life definition.

However, end-of-life charity Marie Curie said it had “serious concerns about the DWP’s ability to recognise when a claimant was approaching the end of life and was in desperate need of support”. Read more here.

The Minister for Disabled People Chloe Smith, has now confirmed new benefit rules relating to terminal illness and ESA and Universal Credit will be introduced in April 2022. Read more here.

New rules exclude Disabled students from Universal Credit

The Government has issued new regulations, removing an exemption ‘work around’ allowing Disabled students to claim Universal Credit (UC).

At present, if a Disabled student receiving DLA or PIP is found to have a ‘limited capability for work’ they can claim UC.

However, the new rules that come into force from 15 December 2021, provide that someone entitled to DLA or PIP will have entitlement to UC only if they are determined as having limited capability for work before they start receiving full time education.

DR UK Head of Policy Fazilet Hadi said: “Given the massive 16% gap between the number of Disabled graduates and non-disabled graduates, the Government should be taking measures to support Disabled students rather than putting financial barriers in their way. A Disabled student may need UC to meet housing and other costs not covered by student finance.

“It is essential that all Disabled university students get early advice to protect their financial position during study.”

Read more here.

Second appeal application lodged for new Jodey Whiting inquest

A second permission to appeal application has been lodged by the mother of Jodey Whiting, who is fighting for another inquest into her daughter’s death. Jodey died in February 2017 following the withdrawal of her benefits by the DWP for not attending a Work Capability Assessment. However, at the time of the assessment, Jodey was housebound with pneumonia, had been in hospital, and had found out that she had a cyst on the brain. The application for permission to appeal follows an earlier application that was refused by the High Court on 11 October 2021. Read more here.

Excluded children put in ‘unsafe’ institutions

A  sharp rise in primary school children being excluded from schools and placed in unregulated, ‘unsafe’ institutions has prompted Ofsted to launch an urgent inquiry.

The Chief Inspector of schools in England, Amanda Spielman, told the Guardian that children whose behaviour was seen as “too challenging” were being removed from mainstream schools and were being placed elsewhere in unregistered settings “with little thought of their futures”.

She said: “Every child, regardless of their background, deserves a good education and the chance to reach their full potential. But some children – often the most vulnerable – just don’t get that. While most children have been back in the classroom since September, some children with behavioural, emotional or health problems are instead in alternative provision instead of a normal school.”

DR UK’s Fazilet Hadi said: “Children labelled as ‘behaviourally challenged’ are essentially Disabled children who are almost certainly not getting the appropriate support and reasonable adjustments at school that the Equality Act entitles them to. Children with cognitive differences, learning disabilities, and poor mental and emotional health are being failed. The data speaks for itself, mainstream schools are not providing the necessary support to Disabled children. The Government is taking no action to stop the breakdown in inclusive education and it is far from clear that its long awaited Special Education Needs and Disability Review will  give Disabled children in mainstream schools the required support.”

According to Ofsted, the overall number of children in alternative provision (AP) has increased 14% over the last four years. Spielman said: “I’m particularly concerned that the number of primary-age children referred to AP has risen by 27% since 2017.” The Department for Education disputes the figures, and claims it is “looking at reforms to incentivise more early support, and to ensure that those who are permanently excluded remain safe and supported, as part of the ongoing review of the SEND system.”

Disabled people Still Locked Out of employment, post pandemic

Leonard Cheshire has launched its Still Locked Out report, looking at the impact of the pandemic on disabled people’s employment and employer attitudes towards disability. It follows on from last year’s Locked out of the Labour Market report. A few headlines are that 69% of disabled people report having their work affected by the pandemic ( including reduction in income, working hours and redundancy). This rises to 89% for disabled young people.

Approaching two thirds of employers (63%) would support a mandate for employers in business with a workforce of over 250 to publish the data on the number of disabled people they employ. This rises to almost three quarters (72%) amongst those organisations that employ disabled people.

The Women’s Budget Group has also produced a new briefing on the gender pay gap, highlighting barriers to working and earning for Disabled people.

Leaseholder cladding payment plans ‘paused’

Michael Gove has said that the government will “pause” plans to make leaseholders pay to make cladding safe, questioning why they have to pay “at all”.

He also said the government “failed people at Grenfell”, speaking of the fire in a London tower block in which almost half its Disabled residents died,.

He made the comments at the Housing, Communities and Local Government Committee, adding: “We have a responsibility to relieve some of the obligations faced by leaseholders at the moment, who are innocent parties in this and who are being in many cases asked to pay disproportionate sums when there are individuals in business – some still in business – who are guilty men and women…

“I’m still unhappy with the principle of leaseholders having to pay at all, no matter how effective a scheme might be in capping their costs or not hitting them too hard at any one time. My question is why do they have to pay at all?”

He said it was his intention to provide support for dealing with other fire safety issues, which can often be even more expensive than replacing unsafe cladding.

DR UK’s Fazilet Hadi said: “We welcome this change in tone from the Government. The cladding crisis has had a devastating impact on Disabled leaseholders and residents. Disabled people have found themselves with bills they can’t afford and with properties they can’t move out of, when their health conditions deteriorate and they need alternative housing. We await concrete proposals.”

Mandatory vaccinations for all health and care staff

The Government has announced that all health and care staff will have to be vaccinated against Covid unless they are medically exempt. The policy is expected to come into force in April 2022.

Further details can be found in the consultation, published here.


DR UK offers a range of online courses, each run in two parts and facilitated by an experienced benefits trainer. 

Introduction to Welfare Benefits 

This 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 – Wednesday 17 November 9.45am – 12.45pm

Part 2: Universal Credit, the wider benefits system and maximising income – Thursday 18 November 9.45am – 12.45pm

Click here for more information and to book your place.      

The course costs £120 + VAT per person for DR UK organisational members. After booking you will receive a Zoom link and supporting materials by email.

Get Involved

Day of action

On Wednesday 17 November, the High Court will finally be hearing the case of two ESA claimants which will decide if the DWP acted unlawfully and discriminated against Disabled people, by not giving those on legacy benefits the £20 a week uplift provided to those on Universal Credit.

There are lots of ways that you can show your support and get involved in this day of action. We hope that you will do all you can, to make sure the millions who missed out are heard at the highest levels. We have tried to make it as easy as possible for you and your supporters to get involved, including:

Disabled People Against Cuts (DPAC) are planning a vigil in the morning from 9am outside of the High Court (Royal Courts of Justice). It will be attended by organisations including Z2K, the MS Society, MNDA, and Leonard Cheshire. A number of MPs have expressed their interest in attending, as well as people affected by the issue. DPOs and individuals are welcome to attend. There will be a loudspeaker available so people will have the opportunity to speak at the event.

DPAC is also asking people to ask high profile supporters, or any MPs/Peers you’re in touch with to get involved as much as possible, including attending the vigil (as well as everything below). We will be inviting media to attend the vigil – this is more likely if we can get some well-known people to come along.

Share tweets on the day about the day of action from the DPAC account on twitter.

For media or social media packs, or info on local vigils, email Ella EllaAbraham@z2k.org or Beth beth.exworth@mndassociation.org.

Tell MPs your experiences of applying for PIP and ESA

The Work and Pensions Committee has launched a survey to hear about first-hand experiences of claiming PIP or ESA.

The survey is open to everyone who has had an assessment to claim PIP or who has had a Work Capability Assessment, either to claim ESA or as part of a Universal Credit claim.

The survey is part of the Committee’s inquiry which is examining the effectiveness of the application and assessment processes for benefits paid to disabled people and people with long-term health conditions, amid continuing concerns about the problems being experienced by people making claims.

The Committee has previously heard that the application and assessment processes for health-related benefits are often flawed, with a majority of people who appeal against decisions made by the DWP being successful.

Stephen Timms MP, Chair of the Work and Pensions Committee, said:

“We hear all too often about the problems that people have when being assessed for PIP and ESA, both on the Committee and as constituency MPs, but progress in improving the assessments has been slow.

Read more, and access the survey in different formats here.

Archbishops’ Commission on Reimagining Care listening and engagement exercise

The Archbishops’ Commission on Reimagining Care has launched its public engagement phase providing individuals and organisations with the opportunity to say where you think care and support is working well, but also where things need to change.

For the next few weeks, the Commission is inviting responses about care and support for adults with disabilities and those with needs in later life. The Commission wants to hear from a wide range of individuals and organisations who have experience of care until 10 December 2021. The Commission, chaired by Dr Anna Dixon and the Bishop of Carlisle, hopes to hear from a wide range of voices, from all faiths and none, and would be very grateful for your involvement.

To share your views with the Commission using the online form, please visit the website.

Have you been using our Active @ Home videos?

At the beginning of this year, Get Yourself Active focused its efforts on supporting Disabled people to be active at home during the pandemic.

Part of this work included creating accessible exercise videos created from research with Disabled people and people with long-term health conditions and creating a new section of our website to house a variety of resources from other organisations. We would now like to follow up with Disabled people to find out how valuable this work has been and plan how to support individuals moving forward.

The survey will take around five minutes to complete, and you can find the link for the survey here.

If you need a refresher, you can access the Active at Home section of the website here or find the videos on our Youtube channel.

It would be massively appreciated if you could share this with your networks and community to make sure we’re hearing from Disabled people from all backgrounds and across the country.

If you have any questions, please email lydia.bone@disabilityrightsuk.org.

Parapride disability and sexuality online event

Parapride is running a ‘Dis-section’ panel event on Wednesday 24 November from 6pm to 7.30pm to mark UK Disability History Month.

The topic of the upcoming event is ‘Disability & Sexuality: The Naked Truth – LGBTQ+ and Body Positive’. Sex and sexuality are favourite topics among the mainstream LGBTQ+ society. However, disability is frequently left out of these conversations. Is this be because disability is considered incompatible to sex-related topics?

Along with a line-up of expert panellists the session participants will converse openly, honestly and respectfully about disability and sex positivity, intimacy, love and dating, ‘hook-up culture’, and the stigmas and taboo attached to being disabled and LGBTQ+.

Registration is required through Eventbrite. Register to receive the zoom link.

Long Covid support programme

Diversity and Ability are partnering with Bridges, a self-management and support social enterprise, on the LISTEN project. This is a two-year NIHR-funded research project involving the co-design of a self-management programme to support those living with Long Covid.

Listen will provide a new book in hard copy and digital form and access to community rehabilitation teams who will provide one-to-one support using the book. We hope this will help people understand their Long Covid symptoms and learn helpful ways to manage everyday life. We also want this support to help people feel hopeful and confident about their progress and getting back to doing things they enjoy.

An important part of the project is to listen to people who have, or have had, Long Covid. Covid and Long Covid continue to disproportionately impact communities and individuals that experience marginalisation; including Black people, those from minority ethnic backgrounds, LGBTQ+ people and disabled people. The project wants to make sure its research is inclusive of all these experiences and will give you space to share in whatever way feels best for you. Please fill out this form if you would be willing to talk about your long Covid journey.

SAAIL project

SAAIL (Supporting Autistic Adults’ Intimate Lives) is a participatory research project that aims to represent autistic adults’ intimate lives in ways that they choose.  We are asking autistic people about their experiences of intimacy, relationships, and sexuality and about how they feel adult social care services in England can best support them to enjoy fulfilling intimate lives.

Interviews can be done online using Zoom or Teams, over the phone, or on WhatsApp and other text messenger options. There may be a possibility to for in-person interviews too. Each participant can choose which method suits them best. Participants will receive a £15 online shopping voucher as a thank you for participating. You can find out more about the project at the SAAIL website.

Email: Monique Huysamen m.huysamen@mmu.ac.uk or call/text: 075 01550535 for more information.

Disability Horizons launches new online wellbeing community

Disability Horizons has partnered with social enterprise Spokz People to launch its new online wellbeing community and programme, funded by the Lottery.

It is tailored to disabled people and their families and enables them to work with a peer to improve their mental health and wellbeing. It includes information and tool kits on how to improve self-esteem, find meaning in life and manage the many challenging situations being disabled brings.

There is a forum, chat room, regular live events and Q&As, and videos from disabled people, including The Last Leg presenter Alex Brooker, disability advocate and Gogglebox star Simon Minty, and disabled influencer and Co-founder of Disability Horizons Martyn Sibley.

The new online wellbeing programme consists of 11 chapters, with more being developed, and includes a variety of exercises, peer videos and external links.

Read our blog

Mikey Erhardt from our Get Yourself Active programme has written a blog about ADHD adaptations and work. Read it here.

RNIB and Blind Ambition event

Blind Ambition and RNIB are hosting a personal branding employment event from 7.30-8.30pm on Tuesday 16 November. Register here.

Do you fancy being an Egghead?

Eggheads is back for a second series on Channel 5 and is looking for teams to take part. The producers are encouraging charities and diverse groups to apply. Teams consist of four members and a stand-by person. Applications need to be in by 10 December. Apply here.

Appear on The Repair Shop

The Repair Shop features a team of Britain’s most skilled and caring craftspeople, who rescue and resurrect items the owners thought were beyond saving.

It is looking for individuals and families with items that need repair to take part in upcoming filming. Your item doesn’t have to be an antique or expensive heirloom, just something that is special to you and has a heartfelt story behind it.

If you, a friend or a family member have a treasured item that’s seen better days and you think our experts can help, please apply directly online by visiting www.bbc.co.uk/showsandtours/take-part/the-repair-shop or email charis.hackett@ricochetic.co.uk putting “Contacted by Charis” in the subject line.