Disability Rights UK Newsletter

We are looking for our next Chair of Trustees

Since its foundation in 2012 DR UK has significantly grown in profile, influence and reputation. In 2022 we celebrate 10 years of our organisation working together with Disabled People leading change. We are looking for an individual who shares our ambitions and values to lead the Board into the next exciting period for DR UK and further grow the organisation’s impact. This is at a time when we need to tackle the inequality faced by all Disabled People in the UK. The pandemic has shown how our hard-won rights can be easily swept away by new legislation.

The role is for someone passionate about equality and human rights, someone who understands the importance of the Social Model of Disability as a driving force for change. The role is rewarding and you will be supported by a committed and skilful Board, CEO and staff team. DR UK brings the lived experiences of Disabled People to everything it does, by challenging policymakers, institutions and individuals to remove the barriers that exist for Disabled People.

As Chair, you will be a Disabled Person and will be willing to support and promote the role of DR UK with skill and enthusiasm.

The recruitment timetable is:

  • Deadline for applications: Monday 26 July
  • Interviews with Prospectus: w/c 09 August
  • Interviews with DR UK w/c 06 September and w/c 13 September

Anyone wishing to apply can have an informal discussion about the opportunity. They should contact our retained advisor Jess Stockford jessica.stockford@prospect-us.co.uk at Prospectus or call them on 020 7691 1920.

For further information visit our website.

To apply directly, visit the Prospectus website.

 

Dear members,

For the past 18 months Disability Rights UK has been working on an internal strategy review. We have been looking at how we can work more deeply, with greater listening, and greater amplification of the voices of Disabled people.

It became clearer than it had ever been at the start of the pandemic that the voices of Disabled people were in danger of becoming lost. Disabled people were at the most risk from Covid, struggling with restricted income, either due to furlough or redundancy, or due to Disability benefits not being increased in the same way as other benefits. We struggled to access food, medicines and safe transport. Hospital appointments were risky and hard to access. Do not resuscitate notes were arbitrarily assigned to our medical records. The virus infiltrated care homes. And as we are all aware, with the heaviest of hearts, Disabled people were the people who died in the greatest numbers throughout the pandemic.

If there was one small silver lining in these truly terrible times, it was that it strengthened our resolve to gather together our voices, speak truth to power, loudly and clearly, and make sure that we are heard. So we did just that. We now have a group of Disabled People’s Organisations in membership who meet regularly to share what is working and what is not working in their local areas across the UK.

Disability Rights UK has always been the UK’s leading UK-wide Disabled Person’s Organisation. We have always been user-led, and are committed to remaining user-led. Our board, our leadership team, our membership, and the vast majority of our staff are Disabled people. Our mission is to effect change as Disabled people, for Disabled people, listening and carrying voices to the heart of decision making in national Government.

We have searched our hearts and decided to leave the Disability Charities Consortium (DCC). Going forward, the bulk of our work will be with Disabled People’s Organisations led and run by Disabled people.

We are committed to working with all organisations which put Disabled people first in their work, and will continue to work with DCC organisations where the confluence of our knowledge and experience works stronger together, but we will no longer sit under the umbrella of the DCC as an organisation.

There is so much further to go for Disabled people to be given full equality across every level of society.

We invite you, as Disabled people, to speak to us, and join us, to form a strong, loud and visible movement with us, as we work to make our rights a reality.

Kamran Mallick

CEO, Disability Rights UK

Lack of BSL Covid briefings – High Court challenge

The government’s lack of sign language interpreters during Covid briefings has been challenged in the High Court. Katie Rowley from Leeds brought a judicial review against the Cabinet Office. The case was heard online on 16 June.

Katie, who is deaf, is arguing that that the government is breaching its obligations to make its broadcasts accessible to deaf people under the Equality Act and that the government breached its obligations under the public sector equality duty by not providing live on-platform British Sign Language (BSL) interpretation for its scientific briefings.

When the claim was issued, Katie was 25 weeks pregnant and particularly anxious to protect the life and health of her unborn son. British Sign Language is Katie’s first language, she cannot follow conversations or access spoken information without an interpreter. She is also visually impaired and dyslexic.

There was no BSL interpreter at the public briefings at all for the first two weeks of the pandemic, governing all the key announcements regarding suspension of schools, closure of public spaces, lockdown, shielding and furlough.

Around April 2020, the Cabinet Office arranged for the ‘in screen’ interpreter to be broadcast on its social media channels through the Number 10 Twitter feed and YouTube channels. However, the ‘in screen’ option continued to fail.

Katie said: “The pandemic has been a very worrying time for everyone but to be pregnant and unable to understand the information coming from the government made it absolutely terrifying. Then, Government Covid briefings were essential for everyone to know what was going on and how to best keep safe – yet they were not accessible to the tens of thousands of people who have BSL as their first language. The late inclusion of an in-screen interpreter, which was then inconsistently available, is just not good enough.”

DR UK’s Head of Policy Fazilet Hadi said: “127,000 people use BSL in England. D/deaf people have been utterly failed during the pandemic in terms of their access to critical information. 25 years after the Disability Discrimination Act became law, it is ridiculous that cases like this still need to be brought to court because reasonable adjustments are not being made as standard.”

Read more here: https://www.disabilityrightsuk.org/news/2021/june/lack-bsl-covid-briefings-%E2%80%93-high-court-challenge

MP tells PMQs about unsanctioned DNR death

The MP for Peterborough Paul Bristow has told the Prime Minister about a patient who died as a direct result of her having a Do Not Attempt Resuscitation order (DNAR or DNR) placed on their records because they had learning disabilities and schizophrenia.

Addressing Prime Minister’s Question Time this week, he said that an unprecedented number of DNR orders were placed on patients with learning disabilities and mental illness last year, many were unlawful and caused avoidable deaths. Despite urgent CQC and NHS guidance, the practice has continued.

He told MPs that the patient’s learning disabilities and schizophrenia were stated as a reason for the DNR, and called for such cases to be independently investigated.

The Prime Minister agreed that DNR notices should only be placed on patients following a discussion with the patient and their carers and families.

DR UK’s Head of Policy Fazilet Hadi said: “The CQC found around 500 cases in their investigations. We welcome Paul Bristow’s use of PMQs to bring this important issue directly and publicly to the Prime Minister. Going forward, we support his calls for independent investigations into any future individual cases.”

Disabled people at greater Covid death risk – ONS research

Research from the Office for National Statistics (ONS) and London School of Hygiene and Tropical Medicine has found that Disabled people in England are at an  increased risk of death involving Coronavirus (COVID-19).

From 24 January 2020 to 28 February 2021, there were 105,213 deaths involving COVID-19 in England; 58% were the deaths of people who were Disabled. The ONS asks Disabled people to identify as “more-disabled” or “less-disabled”. After adjusting for age, “more-disabled” people were more than three times as likely to die from causes involving COVID-19 than non-disabled people. “Less-disabled” people were almost twice as likely to die from causes involving COVID-19 than non-disabled people.

Compared to non-disabled people, the relative risk of death was substantially higher for younger disabled people. Among those aged 30 to 69 years, the risk was 8.5 times greater for more-disabled women and 5.4 times greater for more-disabled men compared with their non-disabled counterparts.

The increased risk of COVID-19 mortality for both younger and older disabled people was partly explained by differences in living circumstances, measures of disadvantage, and pre-existing health conditions. These findings suggest that a combination of these factors contributed towards the increased risk in disabled people.

Campaigners ask for fire safety plans for all disabled residents unable to self-evacuate

This week marked the fourth anniversary of the Grenfell Tower fire in which 72 people died, half of whom were Disabled People or children.

The Government has published a six week consultation on Personal Emergency Evacuation Plans for Disabled People unable to self-evacuate.

The consultation proposal needs to be strengthened in key areas. Personal Emergency Evacuation Plans for Disabled People unable to self-evacuate in the event of fire are only proposed for those  living in high-rise buildings.

At the first consultation meeting, it was pointed out that if Disabled People couldn’t self-evacuate, it didn’t matter how high the building was and all disabled residents should be entitled to Personal Emergency Evacuation Plans.

Participants at the meeting also highlighted the need for building owners and managing agents to clearly communicate that people had a right to Personal Emergency Evacuation Plans and to explain their purpose.

DR UK’s Fazilet Hadi said: “Most of us wouldn’t know that we had an entitlement to a Plan and the responsibility should not be put on Disabled People to “self-identify” our need for a Plan.”

The consultation will run for six weeks and closes on 19 July. It is vital that disability organisations and Disabled People respond to the consultation, as there will be no other opportunity to feed in. Following the consultation a Statutory Instrument setting out the requirements for Personal Emergency Evacuation Plans will be placed before Parliament.

Channel 4 News reported on this issue on 17 June.

Young Disabled people tell Minister what’s wrong with employment support

Earlier this week, a group of young Disabled people spoke to Justin Tomlinson, Minister for Disabled People, about how employment support needs to change. The meeting, organised by Disability Rights UK was held in the lead up to the Government’s soon to be published Green Paper on disability, benefits and work.

The Minister wanted to hear views on support into employment and the Access to Work Scheme. The young Disabled people spoke about the need for careers advice to start early, for Job Centres to have better links with employers, and for more practical assistance to be provided with job search. Whilst they acknowledged that Access to Work could work well, they also pointed to the many instances when it failed, leaving people in new jobs without the equipment and support they needed.

Women go undiagnosed, accused of ‘hysteria’ – CII report

Disabled women with chronic illness are frequently gaslit by medical professions, undiagnosed, and accused of hysteria, according to Chronic Illness Inclusion (CII).

The data will be submitted to the Department for Health and Social Care for its Women’s Health Strategy consultation.

CII received nearly 800 response to a survey about the healthcare experiences of disabled women with energy-limiting chronic illness and chronic pain.

Catherine Hale, who heads CII said: “We had no funding to do it, but the issue of what’s called ‘medical gaslighting’ and the damage it does, not just medically but on the whole of our lives, is probably the most burning injustice for the chronic illness community.

“In this report we argue that the NHS’ construct of Medically Unexplained Symptoms (MUS), which conflates MUS with somatisation and hysteria, produces systemic disbelief in our lived experience of illness and impairment. And our survey findings demonstrate the damage that this systemic disbelief has on the whole of our lives, including by creating barriers to disability equality and inclusion.

“The MUS framework and related services in the NHS are explicitly about cutting healthcare costs by diverting patients who take up too much GP surgery time away from biomedical investigation and into psychologist-led services where their physical symptoms are systemically discredited. There is virtually no evaluation of these services from the service-user perspective. Others have critiqued the MUS construct from within the philosophical tradition of ‘epistemic injustice’ and bioethics (See this article by Diane O Leary and Keith Geraghty )

“This report is just 10 pages, as per the DHSC limit, but we hope its findings will stimulate further service user-led research into this hidden area of injustice for disabled women.”

Disabled student granted permission to legally challenge rules excluding him from Universal Credit

Flinn Kays, a Disabled psychology student, has been granted permission to apply for judicial review of the Universal Credit 2020 Regulations which amend the 2013 regulations significantly and exclude Disabled students like him from entitlement to the Universal Credit (UC).

He currently receives the enhanced rate of both the mobility and daily living components of PIP, but is having to use that money to meet his general living expenses.

However, he calculates that he may be entitled to £899.11 a month UC. But in line with the new regulations, his own UC claim was refused and he was not invited to a work capability assessment (WCA).

Flinn, aged 18, submits that new regulations that bar the path to Disabled students having a WCA and thus claiming universal credit, are unlawful.

Ken Butler DR UK’s Welfare Rights and Policy Adviser said:

“The granting of this new judicial review is great news and hopefully will be as successful as the original – R (Kauser and JL) v Secretary of State for Work and Pensions.

“Following representations by DR UK, both the EHRC, and the Work and Pensions Committee of MPs have previously recommended that receipt of PIP or DLA should mean – as for ESA and Housing Benefit – that Disabled students be treated as having a limited capacity for work for UC purposes.

“Student finance for Disabled students is inadequate as shown by the fact that many would qualify under the UC means test if they were only eligible. In addition, student finance is often unavailable during the whole summer vacation.

“That new regulations blocking UC entitlement were so swiftly introduced last year casts doubt on the Government’s commitment to ensure Disabled people’s access to education. In addition, in turn it casts doubt as to the Government’s commitment to increase the number of Disabled people in employment.”

Read more here: https://www.disabilityrightsuk.org/news/2021/june/disabled-student-granted-permission-legally-challenge-rules-excluding-him-universal

Valuable and Vulnerable – Community Catalysts report

Community Catalysts has released its findings from a six month project working with people who were formally or informally shielded and their supporters in six areas of the Midlands and South. The focus of the project is positive, shining a light on what makes people valuable, and challenging the rhetoric around being vulnerable. Read the Valuable and Vulnerable report here.

Universal credit is a benefit paid to people of working age who are on a low income. Our factsheet F55 explains universal credit in a detailed but simple way.

The factsheet is broken down into 35 bite-sized (or smartphone-sized) chunks, each covering a different aspect of the benefit, including:

Our factsheet F64 covers the ways in which universal credit can take your disability or health condition into account, including:

For a full list of all our other factsheets, visit the Disability Rights UK website.
Run the London Marathon in October 2021

Looking for a new challenge? Want to fundraise for DR UK? Help us continue the crucial work that we do by running the London Marathon for us! For more information, please contact tony.stevens@disabilityrightsuk.org

The University of Leeds and Disability Rights UK are conducting a review of recent research about the lived experiences of disabled people in the UK, for the Government’s Disability Unit.

We have put out a call for people to share research with us that we might not find by looking through the academic literature. Here is the call for evidence:

https://leeds.onlinesurveys.ac.uk/disability-uk-lived-experience-review-2021

If you have any questions, please contact: A.Hollomotz@leeds.ac.uk

£5000 small grant programme open now

A new funding programme called Places Called Home is offering grant funding of between £1000 and £5000 to groups who can meet at least two of the following criteria:

  • Build on the relationships created during the COVID-19 pandemic to increase community activity and the number of people taking part.
  • Encourage people to work together, creating opportunities for communities to live in a sustainable and healthy way.
  • Raise awareness amongst the public of the importance of connected households, neighbourhoods and resilient communities.
  • Develop a new idea, activity or way to come together that has emerged in response to the pandemic.
  • Revive or redesign community and common spaces to encourage shared community activities.

You can apply online from 22 June, following this link: https://www.tnlcommunityfund.org.uk/funding or you can email placescalledhome@tnlcommunityfund.org.uk for alternative formats

The application period closes either when it has received 1500 applications or on 6 July, whichever comes first.

You will need to make sure your project is addressing any potential barriers for people to take part, including communities experiencing ethnic or racial inequity, discrimination or inequality, Disabled people, Travellers, LGBTQ+ people, and people who are seeking asylum or who are refugees. For more information about the Fund’s commitment to equality of opportunity please open this link: https://www.tnlcommunityfund.org.uk/about/customer-service/equalities

Call for user-led organisations to apply to the Tackling Inequalities Fund:

Disability Rights UK (DR UK) is one of the National Delivery Partners for Sport England’s Tackling Inequalities Fund. The fund aims to reduce the negative impact of Covid-19 and any widening of inequalities in participation rates in sport and physical activity. The Get Yourself Active team at DR UK is accepting applications from User Led Organisations (ULOs), or organisations which can demonstrate a user-led project idea, that supports
Disabled people, and/or people with long-term health conditions, to keep active in a Covid-19 safe environment and in a way that is right for them.

For more details about the fund, including how to apply, please contact elliot.watson@disabilityrightsuk.org or call him on 0203 687 0771.

Bridge to Work programme evaluation – invitation to tender

DR 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. For further details, including the Invitation to Tender document and contact details, please see our website. The deadline to submit a tender is 10am on Monday 19 July.

Pathways Academy

The Centre for Accessible Environments Pathways Academy is an inclusive design modular course for Disabled Londoners aged 18-30 funded by the City Bridge Trust.  It is currently recruiting for its next intake.

Pathways provides free training delivered in modules equating to 22 days over nine months on topics like the principles of inclusive design, access auditing, website accessibility, designing for neurodiversity and more. Students will also get hands-on experience from shadowing an access professional.

More information on the Pathways Academy can be found on our website here: https://cae.org.uk/our-partners/pathways/

Motability Scheme National Campaign

The Motability Scheme currently serves a large number of customers with disabilities. The number could be much higher. The data shows that only one-third of eligible disabled people are making the most of the everyday freedom offered by the Motability Scheme, and there are 1.2 million eligible people who aren’t currently Scheme customers.

These statistics are the driving force behind the first ever national campaign for the Motability Scheme, entitled Everyday Freedom, which aims to raise greater awareness and increased understanding of what the Scheme offers. The campaign celebrates the freedom and independence customers say that the Scheme opens up for them.

Running throughout May, June and July this year, the national campaign includes a television advert, radio, digital and print ads, a supporting PR campaign and engaging social media activity. Find out more about the Scheme here: https://www.motability.co.uk/c/everyday-freedom/

Futsal Coach vacancy

The FAW Trust and Welsh Deaf Football Association are looking to appoint a Head Coach for the Welsh Deaf Futsal Squad. Details here:

http://www.fawtrust.cymru/vacancies/fawtrustvacancies/deaffutsalheadcoach/

 

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