Disability Rights UK Newsletter


Disabled people’s groups set out demands for Covid inquiry

The horrifying impact of the Covid pandemic on Disabled people risks being ‘airbrushed out of history’, DR UK and its partners have warned ahead of the looming public inquiry.

The warning comes in a formal response to the inquiry’s draft Terms of Reference (ToR).

The response has been drafted by law firm Bhatt Murphy Solicitors on behalf of a number of Disabled people’s organisations after DR UK chief executive Kamran Mallick attended a ‘stakeholders meeting’ last month.

The response says: “The Draft ToR appear broad, however our clients are concerned that there is no specific mention of Disabled people anywhere in the document with an associated risk that Disabled people’s experiences will be airbrushed out of history. The ToR’s ability to facilitate a comprehensive investigation into the impact upon Disabled people therefore depends upon its interpretation, about which we seek urgent clarification.

“In this regard, our clients note the Inquiry intends to ‘listen to the experiences of bereaved families and others who have suffered hardship or loss as a result of the pandemic’. In addition to dying in disproportionate numbers, Disabled people have suffered disproportionate hardship… (such as) necessities being inaccessible including food, medical and social care, financial support, PPE & testing kits, education, ongoing employment, social contact and exercise.”

Urging the inquiry to investigate the factors behind the hugely disproportionate death rates experienced by Disabled people, the response continues: “Throughout the pandemic Disabled people have experienced mistreatment, reckless indifference and gross negligence. They have been dehumanised and afforded inadequate health care, social care and financial support in full knowledge of the harm that would be caused. This is not simply a case of thoughtlessness, but of deliberate policy decisions.”

Other issues DR UK and partners  are urging the inquiry to examine include:

  • Poor communication
  • The ongoing impact of Care Act ‘easements’ which have allowed local authorities to cut back social care support
  • Difficulties accessing vaccines and the impact on clinically extremely vulnerable people of policy decisions around ‘opening up’ and easing social distancing restrictions
  • The widespread use of DNACPR (Do Not Resuscitate) notices without the knowledge or agreement of individuals affected
  • The extent to which people covered by several protected characteristics such as race, ethnicity and disability have had even worse outcomes than other Disabled people.

DR UK and its partners are seeking core participant status at the inquiry – together with public funding of their legal representation.

Kamran Mallick  said: “The pandemic has scarred the entire population but Disabled people have died in grotesquely disproportionate numbers. The public inquiry simply must examine why that happened and ensure it never happens again.

, the impact of the pandemic has also been devastating for millions of Disabled people in so many other ways. We need our experiences recognised and policies put in place to ameliorate the harms caused by both the virus and the official response to it.”

Victory on care charges – for now

The House of Lords has voted to make the social care cap fairer by ensuring local authority contributions to care can be counted towards the care cap.

Peers also accepted that people who become disabled under 40 should have a zero cap, as recommended by the Dilnot Commission.

Disabled people’s led organisations, including DR UK, welcomed the changes.

Baroness Jane Campbell worked with peers to ensure that the amendment “would go some way to alleviate the financial crisis that working-age disabled people face with the current system and the system proposed by the government”.

However, the Health and Care Bill will return to the House of Commons towards the end of April and campaigners need to convince MPs to uphold the Lords’ amendments.

The Government’s care cap proposals require Disabled people of working age to pay care charges from benefits meant for everyday living. The proposals also fail to count local authority contributions to care, towards the care cap, meaning that poorer Disabled people of all ages get the worst deal.

Baroness Campbell has called on Disabled people’s organisations and charities across the UK to continue to appeal to MPs to “carefully consider why the Lords have rejected the government’s proposals and why they must ask for a better, fairer charging settlement”.

DR UK Policy and Campaigns officer Dan White said: “Thanks to the brave and welcome decision of the peers to push for a fair zero cap for working age Disabled people, we now have a window of opportunity for Disabled people to contact their MP and push for a fair way forward. The care cap proposed by the Government would further erode the living standards of many Disabled people, and this is completely unacceptable.”

You can find a template letter to send your MP here.

Disabled people and pensioners facing catastrophic care costs – Action Network

Fire safety expert blasts Government’s evacuation decision

A leading fire safety academic has attacked the Government’s decision to ignore a key recommendation from the first phase of the Grenfell Tower inquiry around evacuation plans for Disabled people.

Lord Greenhalgh, Minister for Fire Safety, said last week that Personal Emergency Evacuation Plans (PEEPs) could not be implemented for “practicality”, “proportionality” and “safety” reasons.

However, Professor Ed Galea, Director of the Fire Safety Engineering Group at the University of Greenwich, accused the minister of failing to understand how PEEPs can be implemented safely and economically.

In his article, he said Lord Greenhalgh’s statement suggested he had a tenuous grasp of fire safety. He quoted his own detailed studies of high-rise building evacuations – including Grenfell and the World Trade Center on 9/11 – which showed that Disabled people were assisted by strangers and family or friends to evacuate before the fire and rescue services intervened.

Devices such as the evacuation chair can also provide a fast means of assisted evacuation, without any impediment to the evacuation of others.

“It is also worth noting that not all people who are mobility-impaired require a movement assistance device to help them down the stairs, and not all disabled people are mobility-impaired,” he wrote.

Professor Galea continued: “While I agree that society cannot introduce safety measures at any cost, measures suggested by PEEPs need not incur excessive additional costs. Surely the lives of disabled and able-bodied people have exactly the same value. Being required to wait for rescue by the fire and rescue service, while others evacuate, potentially exposes disabled people to unacceptable and unnecessary risk.”

Fazilet Hadi, DR UK’s Head of Policy, said: “Professor Galea and his colleagues are respected authorities on fire safety and his comments must increase the pressure on ministers to fulfil their pledge to implement all the Grenfell Tower inquiry’s recommendations. Disabled Grenfell residents were over-represented amongst the victims of the Grenfell Tower fire and we cannot tolerate a repeat of that scandalous state of affairs.”

Talking therapies to be available in BSL

The Deaf health charity SignHealth has been awarded a national NHS England contract to deliver NHS Talking Therapies in British Sign Language (BSL) to support Deaf people experiencing feelings of anxiety, depression, or other common mental health concerns.

This is the first time NHS England has awarded a national contract to a Deaf specialist service. It is considered a ground-breaking step forward for the Deaf community.

Deaf people are twice as likely to experience mental health challenges compared to hearing people and this new NHS contract removes a major funding barrier to vital mental health support.

Read more on the SignHealth website

Benefits rise does little to ease cost of living crisis

The annual uprating saw benefits and tax credits rise by just 3.1% this week – when inflation is running at 7%.

The benefit increase is based on last September’s inflation figure. However, since then inflation has surged, in large part due to the hikes in energy bills.

Inflation is likely to top 8.4% later this year: a 30-year high. So, in real terms benefits are being cut. This follows the £20 a week drop in Universal Credit last October; itself the most dramatic single cut in welfare provision for a generation.

Disabled people face a double whammy as the extra costs related to disability are also surging.

DR UK’s Head of Policy, Fazilet Hadi, said: “ The cost of living crisis is having a devastating impact on Disabled people. Many will fall into debt or see existing debt problems get worse while others will be forced to choose between starving or freezing.”

Last week saw the launch of a Disability Poverty Campaign Group – a coalition led by DR UK and Inclusion London.

The group is made up of Disabled People’s Organisations from across the country, national charities and allies, such as The Food Foundation, the Joseph Rowntree Foundation and The Trussell Trust. The purpose of the group is to respond to increasing poverty in the Disabled community around food, fuel and benefits as the cost of living spirals.

Chris Birt, Associate Director at the Joseph Rowntree Foundation, marked this week’s benefits rise by urging the Government to act. He said: “The government must, at a minimum, ensure that benefit rises match the real rise in living costs as an immediate first step to protect people from hardship. Beyond this, the government needs to further strengthen our social security system, which was already woefully inadequate even before the cost of essentials began to shoot up.”

DWP reviews PIP decisions for many D/deaf people

The Department for Work and Pensions (DWP) is reviewing many Personal Independence Payment (PIP) claims lodged by D/deaf people since August 2020.

The review will take account of an Upper Tribunal judgment on 21 August 2020 which increased the numbers of D/deaf people obtaining the benefit. The tribunal ruled that D/deaf people who have to remove hearing aids or cochlear implants while washing face additional danger from fire because they might not hear a fire alarm. The judgment awarded the two claimants bringing the appeal two additional points as they met the threshold of “requiring supervision or prompting to be able to wash or bathe”.

As the DWP had already awarded the claimants six daily living points, this meant both achieved the eight points needed to qualify for the standard rate of the PIP daily living component.

Entitlement to PIP is determined by assessment of a claimant’s ability to safely carry out specified daily living and mobility activities – including washing and bathing.

DWP “administrative review”

The DWP says that it has applied the 2020 ruling to all PIP decisions since 17 May 2021 by considering whether a visual alarm would suffice or if the person needs supervision to wash or bathe safely.

A DWP spokesperson said: “We are now looking at PIP claims from deaf or hearing-impaired people who may be affected by this change. This includes reviewing some claims we decided on or after 21 August 2020, including ones where we did not award PIP.”

Applicants do not need to provide any further evidence or attend an assessment as the DWP will draw on information from original PIP claims. Warning that the review might take some time, the DWP pledged to backdate any awards.

Read more on the DR UK website here

Judge slams “brutal and abusive” placement for autistic adolescent

A 14-year-old autistic girl was unlawfully detained in hospital and restrained in front of scared young patients, a high court judge has found.

On one occasion the teenager broke into a treatment room where a dying infant was receiving palliative care. She was restrained there by three security guards, Mr Justice MacDonald said in a judgment in the family court that ordered Manchester City Council to find the girl a suitable community care placement instead of what he described as the “brutal and abusive” and “manifestly unsuitable” hospital environment.

Nurses witnessed the girl screaming “very loudly” and sounding “very scared” when repeatedly held down on her hospital bed so that she could not move her legs, arms or head, before being tranquillised. Other children on the ward were frightened to witness the frequent battles between the girl and security guards, the judge said.

Read the full story on The Guardian website.

Liz Carr makes her point after theatre awards triumph

Disabled actor Liz Carr won best supporting actress for her role in The Normal Heart at the Olivier awards for theatre.

Speaking to the media afterwards, the Silent Witness star used her success to call on theatres to stage separate ‘Covid safer’ performances for people who still feel uncomfortable in large gatherings without facemasks or social distancing.

“Theatre should remain accessible even to those of us who have health conditions,” she told BBC News.

“If I’d had a five-minute speech, I would’ve talked about how I haven’t been to the theatre in over two years. This is a frightening night for me,” she continued.

The Normal Heart, which was staged at The National Theatre, is a play about the AIDS crisis in 1980s New York.

In her acceptance speech, Ms Carr said her award win “proves Disabled people can fill a stage”.

See the full story on the BBC website.