Disability rights UK Newsletter – 26/6/21

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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.


Tory peer calls for UC uplift to be maintained

A Tory peer, regarded as one of the architects of Universal Credit, has said that government should keep the uplifts introduced to the benefit during the pandemic.

Former Minister David Freud told The Observer that it had taken a global health crisis for the welfare system to be provided with adequate funding, saying that in his time as Minister, he battled against “massive cuts” demanded by the Treasury and had considered resigning.

He is calling on the government to keep the increase in housing allowance and said that ministers should rethink plans to cut the £20 a week uplift to basic payments from September.

“When you’ve got lots of people who are not normally in the welfare system needing to subsist, the rates aren’t good enough,” he said.

He said that on top of demanding cuts, the Treasury wanted to use universal credit to get back accidental overpayments, leaving thousands of claimants with unexpected low monthly payments.

“It was a part of the deal,” he told The Observer. “The Treasury said, ‘you can have universal credit, but we want to use it as an efficient debt collection device’. And, of course, it is very efficient. I think it’s counterproductive: it undermines universal credit. I wish we hadn’t had to agree to it.

“By the time we’d gone through the coalition period [with the Liberal Democrats], all the cuts that were reasonable, and extra ones, had been done,” he said. “I think it was a mistake, particularly from 2015, to go on with this massive cuts programme.”

A government spokesperson told the paper: “Universal credit enables claimants to support themselves and their families, helping them to move back into work, allowing them to increase their hours and supporting them towards financial independence. When the chancellor announced the six-month extension to the uplift, it was clear it was a temporary measure to support households affected by the economic shock of Covid-19.”

DR UK’s Head of Policy Fazilet Hadi said: “David Freud’s support is welcome. However, to say that ‘people not normally in the system’ need the extra support, but not those who have to live on benefits permanently due to disability is somewhat galling. It is evident that benefits are meagre and hard to live on. It is not a case of them not being enough for ‘us’, ignoring the Disabled ‘them’. Benefits need to be uplifted so that all people living on them, beyond the pandemic, can do so without debilitating fear and anxiety about making ends meet.”

Government delays critical social care meeting

A meeting to hash out social care policy between Boris Johnson, Rishi Sunak and Matt Hancock scheduled for Tuesday of this week was cancelled this week.

The meeting had been scheduled to set out broadbrush policy objectives on social care.

DR UK’s Head of Policy said: “Social care has been on its knees for years, and the increased pressures of the pandemic brought it home that we are out of time when it comes to procrastination.

“The news that this crucial meeting was cancelled, with no future date yet set for when it will be held, is disappointing. Huge injections of money are needed for social care, now.”

Writing in the Daily Mail, former Health Secretary and current Chair of the Commons Health Committee Jeremy Hunt urged the prime minister to ignore the “national bean counters” and deliver enough resources to social care. He said that the meeting is “a do or die moment for social care” and that limiting spending is a false economy, highlighting five million people waiting for support.

Social Care changes must improve Disabled people’s lives: sign the Statement

The Government’s commitment to publishing proposals for social care reform by the  end of this year is welcome, but disability groups believe that there is a danger that the reforms won’t improve the lives of Disabled people.

Organisations led by Disabled people feel that they are being excluded from current discussions being held by the Department of Health and Social Care. To address this, a Statement has been produced that sets out the principles which should underpin reform and the actions which need to be taken to ensure that reform improves the lives of Disabled people. Organisations and individuals are being asked to sign the Statement by 4 July, prior to it being shared with Government.

Fazilet Hadi, Head of Policy at Disability Rights UK said: “The only test for social care reform is whether it improves the lives of Disabled people of all ages. Does support enable us to live with dignity? Does support enable us to lead full lives, connecting with family and friends, being part of the community, to learn and work, to follow our passions and have fun?

“Social care must enable us to have equality with others and to contribute to the world around us. It must not starve us of support, burden us with unfair charges and treat us as second class citizens.”

Government must urgently talk to Disabled people, old and young, so that reforms aren’t about moving the deck chairs or financial caps but are focused on transforming the quality of our lives.”

Call for stronger Government regulation on protecting Disabled people from fire

Disability groups are urged to respond to the Government’s consultation on Personal Emergency Evacuation Plans for Disabled residents. Disability Rights UK, Leaseholders Disability Action Group and Grenfell Next of Kin have highlighted four key areas where Government proposals need to be strengthened.

Government regulations must make it absolutely clear that the responsibility for communicating the purpose of Personal Emergency Evacuation Plans (PEEPs) to residents and explaining their vital role in the event of fire, is placed firmly on building owners and managers. The height of a building should not matter. All Disabled residents who need a Plan should have one. Personal Emergency Evacuation Plans should clearly state what is needed for a safe evacuation and the document should be provided in accessible formats. Plans should be stored securely and be regularly updated.

A sample response been drafted to make it easier for disability groups and Disabled individuals to respond.

The consultation closes on 19 July. This is the only window for people to give their views, as following the consultation, regulations will be laid before Parliament.

Fazilet Hadi, Head of Policy at Disability Rights UK said: “41% of the Disabled residents of Grenfell Tower died in the fire. Every Disabled resident that needs a Personal Emergency Evacuation Plan should have the absolute right to have one. People should also have any evacuation aids that they need to escape their homes and the costs of this should not fall on Disabled people.

The Government needs to demonstrate that protecting Disabled people from fire is of the highest priority and to put measures in place to make this a reality.”

Grenfell CEO ‘suffered’ staff for out of date details on Disabled people

The Chief Executive of the management organisation for Grenfell Tower has blamed his staff for allowing the block’s fire safety plan to become 15 years out of date so that it failed to account for the vast majority of Disabled residents, reports The Guardian.

Robert Black, Head at the Kensington and Chelsea Tenants Management Organisation (TMO) at the time of the fire, told the public Inquiry into the disaster that records showed only 12 Disabled residents in the tower. The tower had over three times as many Disabled residents. 15 of the total of 37 residents died in the fire.

The Inquiry has heard from lawyers for the bereaved who said that the fire was a “landmark act of discrimination against disabled and vulnerable people”.

“Information should have been updated by staff,” Black told the Inquiry. “The whole thing that I suffered throughout my career working with people is the ability to forget to fill in the paperwork.”

Richard Millett QC, Counsel to the Inquiry, said to Black: “In reality, as the Chief Executive you were ultimately responsible for a failure to keep these documents up to date lower down in your organisation”.

“Pass,” he replied. “It should have been updated. I’m not shying away from that, so that’s my situation.”

Black added that he had decided not to act on warnings that the landlord should draw up specific emergency evacuation plans for Disabled people, claiming it was impractical. He said the key policy was to stay put in the event of a fire.

Just two of around 10,000 TMO tenants in the borough had a personal emergency evacuation plan.

Black was in charge of the TMO from 2009, which operated Grenfell Tower for the Royal Borough of Kensington and Chelsea. He was in post when 72 people died in the fire in the tower.

The Inquiry was told that in the years before the fire, the TMO let the idea of producing personal emergency evacuation plans for vulnerable people “drop”, even though it had been warned by safety consultants and the London Fire Brigade that its fire risk management fell short.

A consultancy hired by the TMO told it seven years before the fire that it should develop “formal procedures to deal effectively with fire safety issues associated with disabled or vulnerable tenants and leaseholders … this should include a range of options from relocation in severe cases … and the provision of personal emergency evacuation plans in those less serious cases.”

Black didn’t accept that specific fire evacuation plans needed to be made for Disabled people, despite knowing that failing to do so would breach fire safety regulations. He queried how it would be possible for 10,000 tenants.

Black told the Inquiry that he gave the TMO’s lead on financial services and IT, Barbara Matthews, responsibility for fire safety. Matthews had no experience in health and safety.

Black told the Inquiry: “I wouldn’t have had the income to have someone sitting on the executive specifically doing health and safety… Local authority funding across the country had been cut.”

80% of Disabled college children infected with contaminated blood died, Inquiry hears

A public Inquiry has heard how nearly 100 pupils at a specialist school for Disabled children were infected with contaminated blood in the 1970s and 1980s.

Former pupil Gary Webster is one of 89 pupils affected who attended Treloar College in Hampshire, of whom only 17 are still alive. He told the Inquiry that neither he nor his parents were aware that he was being used as part of a medical trial.

Around 3,000 people in total are believed to have died after contracting hepatitis C and HIV from blood products imported from the USA.

He said: “I honestly don’t remember having any information about going on trials research or anything like that. My parents never were informed of any of it … We always saw we were in some sort of weird experiment because we just couldn’t understand why they were pushing us so much to have all these injections.

“At the time we were just unaware, we just did as we were told.”

An undated consent form allegedly signed by his mother was shown to the Inquiry. Webster said his mother had no memory of it.

The Inquiry was also shown a document which said that haemophilia doctor, Antony Aronstam, “emphasised the necessity for research as the concentration of haemophiliacs found at Treloar’s is unique within Britain”.

Webster was told he was HIV positive in 1983, when he was 18. He said he went on “a mission to destroy myself” for a decade, including driving a car into a brick wall to try to kill himself. He is one of only 17 pupils alive from the original 89 infected.

DR UK’s CEO Kamran Mallick said: “That children were effectively used as lab rats at a school where they were supposed to have specialised, protective support is utterly abhorrent. That so many people have lived shortened lives with the constant fear and expectation of needless early death as a result of these experiments is horrific. We know that today, more than thirty years on, there are still an unacceptable number of facilities for Disabled children where abuse is still perpetuated. Disabled lives matter. Disabled children matter. The mindsets which lead to Disabled children being used and abused like this have to change.”

Demand for children’s mental health support three times beyond capacity

Projections from the Centre for Mental Health, involving NHS economists, suggest demand for child mental health support post pandemic will be up to three times greater than the capacity of mental health services.

With children’s mental health services already under strain before the pandemic, families in some areas are being confronted with waiting times of up to four years for support.

An extra 1.5 million children will need mental health support “as a direct impact of the pandemic” in the next three to five years.

In May it was reported that children’s mental health needs had shot up by a third since the start of the pandemic

The Daily Telegraph reports that private therapists are saying they are also receiving double the amount of calls they usually have and are having to turn patients away.

Lockdowns and social distancing have left a legacy of behavioural problems for children and families, with many children fearing contracting the virus.

Children as young as five are reporting fear of meeting friends, or leaving their homes.

The Children’s Commissioner for England Dame Rachel De Souza said a survey of over half a million children shows that mental health is their biggest concern.

She said: “Coming out of lockdown and not knowing how to make friends anymore, not knowing how to talk to anyone else. Everyone is on edge.”

DR UK’s Fazilet Hadi said: “As hidden disabilities, mental health conditions are often swept under the carpet. Families with children with poor mental health are often left to just get on with it, with little or no resources or tick box solutions which are not individually child-centred.

“The impacts of poor mental health in childhood are often felt for a lifetime. We know that the one in seven children who are neurodiverse are at even greater risk of poor mental health.

“We have heard from countless families about how ineffective the current support systems such as CAMHS are even before the pandemic.

“The government needs to commit to significant spending and reform of children’s mental health services before it is too late for this generation.”

Industry ‘out of touch’ on working from home

The President of the CBI, Britain’s biggest employers lobbying group, has told a conference that: “the worst thing possible would [be to] have any legislation that entitles people to the right to work from home… They should have the right to request it. But every employer should make that decision about the mix of working from home [and the office].”

Lord Bilimoria, who is also Chairman of the Cobra Beer Partnership, was responding to news that Downing Street has confirmed the Government is considering changes to legislation about working from home.

DR UK’s Fazilet Hadi said: “The pandemic has had few silver linings, but one of them has been flexible working. Disabled people, who often struggle with the pressures commuting puts upon energy, pain and coping levels, coupled with a lack of accessibility on transport and in workplaces, have often benefited from the shift to home working. It has been safer, but also allowed us to show employers just how productive we can be with the right adaptations.

“The shift to homeworking has also benefited families, especially women, who often bear the brunt of childcare responsibilities. Anna Whitehouse’s work on the Flex Appeal project has made it clear that the ‘right to request’ flexible working is not a patch on workers in certain jobs being able to work flexibly as a right.

“The nine to five in a set location is a hangover from the 1920s car industry. The men in charge of industry insisting on the ‘right to request’ are out of touch and need to wake up and realise that many workers thrive with a combination of autonomy and flexibility, and as they thrive, so do the businesses they work for.”

A Downing Street spokesperson said a flexible working taskforce was examining how best to proceed. “What we’re consulting on is making flexible working a default option unless there are good reasons not to.”

Calls for flexible non-academic routes into civil service

Labour has called on government to end the need for academic qualifications for civil service jobs in most cases.

The Deputy Leader of the Labour Party, Angela Rayner, said that degrees and A-levels should only be considered where there was a genuine need for that level of knowledge, such as in scientific positions.

Michael Gove, Minister for the Cabinet Office, has promised to open up the civil service with more flexible entry routes including apprenticeships.

DR UK’s Head of Policy Fazilet Hadi said: “There are around half a million employees in the civil service. It is imperative that those acting on behalf of government fully reflect the society they serve.

“With over a fifth of the population being Disabled, and with many Disabled people facing barriers to education and qualification, including systemic barriers in higher education, such as a lack of physical access and accessibility funding, and a lack of adaptation for neurodiverse people who cannot deal with the pressures of assessments and exams.

“Disabled people often excel at problem solving. We are often highly resilient and resourceful, but are too often overlooked due to failures in the current system. We often have the skills, will and life experience to help transform the cultures from which we are too often excluded for the better.

“Flexible routes into the civil service are not just a nice to have, they are absolutely necessary for an inclusive workforce.”

Sacked mother of Disabled children wins tribunal

A community nurse who was fired from her job as a nurse for not agreeing to work weekends has won a “landmark” ruling for working mothers after a judge said employment tribunals must consider childcare disparities.

Gemma Dobson worked fixed shifts so that she could care for her three children, two of whom are Disabled. She was fired by North Cumbria integrated NHS foundation trust in 2016 after she was unable to meet a new requirement for community nurses to work flexibly, including at weekends.

Dobson was unsuccessful at an employment tribunal citing unfair dismissal and indirect sex discrimination. She has won an appeal before the President of the employment appeal tribunal, Mr Justice Choudhury.

In his written judgment Choudhury said “childcare disparity” was a matter employment tribunals “must take into account if relevant”.

“Whilst things might have progressed somewhat in that men do now bear a greater proportion of childcaring responsibilities than they did decades ago, the position is still far from equal.

“The assumptions made and relied upon [by the appellant] … are still very much supported by the evidence presented to us of current disparities between men and women in relation to the burden of childcare.”

Dobson said: “It means everything knowing that others also believed in me and my strength in staying dedicated to my journey for justice… I truly hope that in the future other working mothers won’t be discriminated against for having caring responsibilities; especially those that care for Disabled children.”

Employment lawyer Doreen Reeves who acted for Dobson said: “Working mothers should not be tasked to prove this assumption time and time again when they bring employment tribunal claims. This important landmark decision gives a clear warning, working mothers with caring responsibilities should not be penalised if they are not able to work flexibly to meet business needs or demands of a service.”

Ombudsman finds against Essex Council’s decision not to allow Disability Related Expenses

The Local Government and Social Care Ombudsman has found Essex County Council at fault in how it considered two separate women’s Disability Related Expenses (DREs).

Court-Appointed Deputies make decisions about the financial affairs of the women, because they cannot do this for themselves.

The Council argued that these Deputies cost more than the rates for its own Deputies, and as such, it was not reasonable to treat the higher cost as a Disability Related Expense.

The Care Act states that councils should take into account the expenses an individual incurs directly related to a disability when assessing how much they should contribute towards their care.

The Ombudsman found that because both Deputy Services were appointed by the court, it was not a case of the women wanting a more expensive service. In addition, the council could only change the Deputy acting on behalf of the women through an application to the court, so the council’s service was not reasonably available to the women.

Michael King, Local Government and Social Care Ombudsman, said:

“The council appears to be fettering its discretion when considering these women’s cases. The Guidance says the council may decide not to allow DREs where a cheaper alternative is available.

“However, in these cases, the council appears to have decided that, as there is a cheaper option, it automatically means it will not allow the full fees, rather than considering the specific circumstances.

“I am pleased the council has agreed to revisit its assessment of the two women’s circumstances, and hope this will clarify their position regarding the expenses they are receiving.”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.

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 – Thursday 6 July 9.45am – 12.45pm

Part 2: Composing effective written submissions, preparing claimants for appeal hearings – Friday 7 July 9.45am – 12.45pm

Click here for more information and to book your place.

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.

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.

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

Get Ahead

The latest edition of the Get Ahead Newsletter is out now. This edition includes information on T Levels, education/work experiences from disabled young people, school/college awards, opportunities to join an apprentice network, learn new skills in a co-production project, and take part in a research project and Get Yourself Active.

Read the Get Ahead Newsletter.

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.

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.

Places Called Home

Places Called Home is a small grant programme for up to £5,000 per project to improve community spaces and deliver sustainable activities for communities across the UK. Applications open on 30 June.

The window to apply will only be open for two weeks (until 11.59pm on 14 July), or once it receives 1,500 applications – whichever comes first – this is because it will only assess the first 1,500 applications it receives.

Apply online.

Genome sequencing meeting

One hundred and thirty members of the public from around the UK have taken part in a dialogue about the implications for the NHS and society of using whole genome sequencing for newborn screening.

The dialogue was commissioned by Genomics England and the UK National Screening Committee, co-funded and supported by UKRI’s Sciencewise programme.

The Government is running an online event from 10am-noon on 8 July to set out the findings of this discussion. Further details are available on Eventbrite.

Ask how I am

National Voices’ latest report and campaign, Ask How I Am: Supporting emotional health among people living with long-term conditions highlights the impact on mental health of living with physical ill health, identifies what helps, as well as the barriers to effective support, and calls for urgent improvements.

Given the huge mental health fall-out stemming from COVID-19, which particularly impacts people living with long-term conditions who were advised to shield and had their treatment cancelled or postponed, the report and parallel campaign is a direct appeal to all those healthcare professionals caring for people living with long-term conditions, asking them to do their to best support their patients’ emotional health.

Of course, in some places this happens already – many healthcare professionals already provide compassionate care, and no doubt many more want to but are frustrated by a system that can make this difficult – short appointment times and a lack of mental health training, for example.

The campaign #AskHowIAm aims to ensure all healthcare staff really find out how people are on an emotional level, and that the system provides the time, training and tools for them to have those crucial compassionate conversations.

Read the report here.

See What I Can Do

See What I Can Do is a new children’s book which explains how a range of disabilities affect people, and how Disabled children can do all the things non-disabled children can do.

Read a review by one of our young contributors, Aurelia, on the DR UK blog.

The Reason I Jump

Based on the book by Naoki Higashida, The Reason I Jump tells the stories of autistic children across continents, attempting to explain their non-verbal outlook on life through their sensory perceptions. The film has a limited cinema release at the moment. Funded by Netflix, it is likely to be available on the streaming platform at a later date.

You can find out more about the release, and book tickets via location at the film’s website.

List of cinemas screening the film:

BFI Southbank
Riverside Hammersmith
Arthouse Crouch End
Bertha DocHouse
Ritzy, Brixton
Bromley Picturehouse
Crouch End Picturehouse
Picturehouse Central
Clapham Picturehouse
Fulham Road Picturehouse
Greenwich Picturehouse
Hackney Picturehouse
West Norwood Picturehouse
Rio Dalston
Cineworld West India Quay
Barbican Cinema
Genesis Cinema
Catford Mews

HOME Manchester
Sheffield Showroom
Bristol Watershed
Broadway Cinema, Nottingham
Depot, Lewes
Queens Film Theatre, Belfast
Glasgow Film Theatre
Irish Film Institute, Dublin
Brighton Komedia
Arts Picturehouse Cambridge
Cameo Picturehouse
Exeter Picturehouse
Picturehouse at FACT Liverpool
Cinema City Norwich
Harbour Lights, Southampton
City Screen York
Cineworld Basildon
Cineworld Hemel Hempstead
Cineworld Sheffield
Cineworld Glasgow Renfrew Street

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