Disability Rights UK Newsletter

DR UK holds assisted dying debate to inform stance on Meacher Bill

Four prominent Disabled activists took part in an online debate around assisted dying this week as DR UK trustees prepare to review the organisation’s position on the issue.

A video of the 90 minute debate, which was organised in response to Baroness Meacher’s Assisted Dying Bill, is available on the DRUK website. The Bill is currently making its’ way through the House of Lords

Kamran Mallick, DR UK’s chief executive officer, urged “as many Disabled people as possible to watch and engage with the debate”.

Baroness Jane Campbell and Phil Friend, leaders of the Not Dead Yet group, spoke against Baroness Meacher’s bill – arguing that where assisted dying legislation had been introduced in other countries, safeguards had quickly been dropped and the criteria expanded.

Phil said: “The legislation is not safe, that is the nub of it. It does not provide enough safeguards.”

The pair also argued that the pandemic had exposed the level of discrimination against Disabled people that put lives in danger or reduced quality of life due to lack of support – pointing to the surge of blanket ‘do not resuscitate’ notices imposed early in the pandemic.

However, Dr Stephen Duckworth and Professor Thomas Shakespeare said that the safeguards in the proposed legislation were adequate and would be very difficult to amend.

Stephen urged people to avoid “conflating two separate issues” – shortcomings in palliative and social care and assisted death. He said that people who campaigned for disability rights should support choice around timing of death in carefully controlled circumstances.

“A terminally ill person is not choosing between living and dying but two ways of dying,” he said.

Tom suggested that Disabled people who depend on medical treatment and technology could already exercise choice by refusing treatment.

To listen to the recording click here https://youtu.be/KhjERvkSqQ8

Becoming a Paralympian isn’t just about ‘trying harder’

Writing for the Guardian, Lucy Webster, political journalist, writer and disability advocate, highlights the barriers that Disabled people face not just in accessing sport, but also in wider society.

As Webster explains, the Paralympics as an event inspire a limited discourse on Disability. Commentators focus on the idea that Paralympians represent what all Disabled people could achieve “if they just applied themselves”. The dominant thinking in society is that if a Paralympian can lift 150kg then surely the “average” Disabled person can get to a job interview.

However, what Webster believes the Paralympic conversation should be, is how other Disabled people would flourish if they received the same care, attention, and resources that Paralympians did? Over £75m was spent on funding Paralympics GB for Tokyo, what would happen if similar sums were additionally targeted towards helping Disabled people live fulfilling lives from work to being able to see friends or exercise and get active in ways that suit them?

Of course, it’s not just practical support Disabled people need – ableism is endemic and hostile attitudes towards Disabled people remain across society.

The message from the Paralympics is clear, stresses, Webster, in the closing section of her piece:

When we watch the Games, we are not watching people who have “overcome” disability. What you’re seeing is people who have fought tooth and nail for the basic support to allow them to access sports with their disability, who had encouragement from those around them, who believed they could achieve sporting greatness, and then had the resources to make this happen”

Disability Rights UK Head of Policy, Fazilet Hadi said “I love the spotlight that the Paralympics puts on Disabled people. We are often invisible in the media, so it’s fantastic to see us take centre stage.

As eloquently expressed in this article, with the right support Disabled people flourish. This is a message that the Government needs to take to heart.  Investing in Disabled people will enable us to live independently and unlock our talent and contribution.”

You can read Lucy Webster’s full article here.

BBC video highlights tragic impact of service failings for autistic people 

Campaigners say autistic people with mental health problems are being left to “fall through the cracks” by health and social care services.

Health Foundation analysis for BBC News suggests only around 10% of social care staff have had any training in how to support people with autism.

And the National Autistic Society say more than 300,000 people are not getting their needs met by their local social services.

They have highlighted the issue with a video about Will Harrison, who took his own life at the age of 19 last December after many unsuccessful suicide attempts. In the video, Will said that he felt repeatedly let down by services – including being told by an A&E nurse after one suicide attempt to download a mindfulness app.

Will died in supported housing where the local authority suggested he move so he could supposedly gain the care he needed.

Food suppliers warn of threat to care home deliveries

A company which supplies food to care homes says it is taking “drastic action” to address the shortage of lorry drivers.

The boss of Country Range said the group was buying smaller vans so it could reduce the “significant” problems caused by a lack of qualified HGV drivers. Smaller vans can be driven by people with ordinary driving licences.

Managing director Coral Rose told the BBC that the issue was set to get worse as schools and offices return to normal through September.

A combination of Covid, Brexit and other factors has meant there are not enough drivers to meet demand.

The Road Haulage Association estimates there is now a shortage of more than 100,000 drivers in the UK, from a pre-pandemic figure of about 60,000.

Country Range supplies food and non-food products to care homes, schools, hotels, restaurants and small shops.

Ms Rose said the shortage of drivers had affected both the supply of products from manufacturers to its warehouses and also from its warehouses to its customers.

The government said there was a “highly resilient” food supply chain and it was taking measures to tackle the driver shortage.

A Government spokesperson said it had “well-established ways of working with the food sector to address food supply chain disruptions”.

Financial institutions failing Disabled People on accessibility

All the UK’s best known financial institutions tested by digital inclusion specialists have accessibility errors on their website homepages that are causing unnecessary hardship for disabled people.

Dig Inclusion, which helps public bodies and private organisations improve their digital accessibility, carried out a survey of 20 of some of the biggest banks, building societies, lenders, and insurers in the UK in July. They found a range of issues that impede accessibility for Disabled people.

Steve Webb, Head of Customer Engagement at Dig Inclusion, said: “We are shocked at these findings, which are far worse than we expected. Without fail, each and every one of the homepages we manually tested against the Web Content Accessibility Guidelines (WCAG) reported a fault. Some of the issues on the homepages alone – which are effectively the digital shop windows of these financial institutions – are worryingly critical. We didn’t look beyond the home pages for this test, but I would be confident that the issues will extend to other pages, apps and tools.”

Fazilet Hadi, DR UK’s Head of Policy, said “Disabled people have the right to live independently and that means that we need the same access to our bank accounts and other financial products, as the general population. It’s clear from this survey that we are being let down by household names in the financial sector. These organisations have a legal duty to meet the accessibility needs of all Disabled people including those with sensory and cognitive impairments.

Minister rejects DR UK request to extend railcards 

Transport minister Chris Heaton Harris has rejected calls to extend the Disabled Persons Railcard. Many Disabled people were unable to use the Card for extensive periods during the pandemic.

DR UK Rail Policy Adviser, Stephen Brookes, wrote to the Minister requesting an extension to the card operating period.

Stephen wrote “You will appreciate that many Disabled people live on the poverty line and many of us were forced to shield during the crisis. Having a rail card that couldn’t be used has led to unnecessary expense. We would ask that there is some extension made for the period in which the card couldn’t be used.”

However, in his response the Minister said that “fares revenue fell drastically during the pandemic compared with pre-COVID levels and is yet to recover”. He added that the Government must be “fair to taxpayers and support our economic recovery”.

But Stephen says that the highly discounted fares many rail companies are offering to attract customers back to the system are costing far more than extending the railcard.

He said: “I am deeply disappointed and feel the response to our reasonable request is most unfair. Disabled passengers are being treated very badly by the industry, which is failing to recognise the extenuating circumstances that should result in a railcard extension. We asked for a low cost, meaningful inducement for Disabled people to return to using rail. The response demonstrates that we must keep pressing for greater recognition of the unique needs of Disabled people in using public transport.”

Pupils with special educational needs hit by shortage of psychologists

Many children with special educational needs and disabilities are starting the new school year without the education, health and care plans (EHCPs) that they are entitled to, according to a report in the Observer.

At least one local authority, North Yorkshire County Council, has written to parents warning them that a shortage of psychologists to conduct needs assessments means many will not be completed within the statutory requirement of 20 weeks.

The council says in the letter that many other local authorities are facing similar recruitment difficulties.

It says: “This is not an issue purely for North Yorkshire; the Department for Education have been monitoring educational psychology capacity during the pandemic and the current data identifies that 70% of local authorities are operating with reduced educational psychology capacity.”

EHCPs set out the extra provision that children with high special educational needs and disabilities (SEND) are legally entitled to. To decide whether to provide an EHCP, and what should go in it, councils must carry out an assessment, drawing on advice and information from an educational psychologist.

Fazilet Hadi, DR UK’s Head of Policy said “Children and young people with SEND have had an extremely rough deal during the pandemic and this latest blow puts them at a further disadvantage in catching up with missed learning.

The National Disability Strategy demonstrated a lack of Government support for inclusive education and inadequate future planning for children and young people with SEND. A long awaited review of the SEND system is in the pipeline with no publication date.

Youngsters previously classed as clinically extremely vulnerable expected back at school following official advice

Children and young people under 18 should be removed from the national database of shielded patients, the UK Clinical Review Panel has recommended.

In a statement, the Department for Education (DfE) said that clinical studies have shown that children and young people, including those originally considered to be clinically extremely vulnerable (CEV), are at very low risk of serious illness if they catch the virus.

It said that specific clinical advice around shielding may be given to a few such children but others should instead follow the same guidance around Coronavirus safety as everyone else.

This means that school attendance for this group of children is mandatory and the DfE statement acknowledged that some “may be anxious about returning to face-to-face education for the autumn term”.

It continued: “Whilst attendance is mandatory, we recommend that leaders in education work collaboratively with families to reassure them and to help their child return to their everyday activities. Discussions should have a collaborative approach, focusing on the welfare of the child or young person and responding to the concerns of the parent, carer or young person.”

The Department for Health and Social Care has developed an online FAQ and written to the families of children and young people previously classified as Clinically Extremely Vulnerable.

Fazilet Hadi, DR UK Head of Policy said “Of course it is good news that the evidence shows that the majority of children and young people previously shielding need not continue to do this. However, for a small minority, precautions will still be needed.

Parents and young people need to be supported to understand their specific situation and directed to specialist medical advice”

‘Booster’ Vaccination Programme Launch

Ministers have accepted expert advice which will see people with severely weakened immune systems offered a third jab before a wider ‘booster’ vaccination programme is launched.

Health Secretary Sajid Javid emphasised that the third shot recommended by the Joint Committee on Vaccination and Immunisation (JCVI) is intended to ensure that people with weak immune systems have the same level of immune response as most people generate from two jabs.

He said it was based on trial data around immunosuppressed people and is not part of the proposed booster programme which will cover many more people.

“The NHS will contact people as soon as possible to discuss their needs and arrange an appointment for a third dose where clinically appropriate,” he said.

Mr Javid said that ministers and officials are continuing to develop plans for the booster programme to begin this month “to ensure the protection people have built up from vaccines is maintained over time and ahead of the winter. We will prioritise those most at risk to COVID-19, including those who are eligible for a third primary vaccine, for boosters based on the final advice of the JCVI.”

Health and Disability Green Paper – a cause for concern

On 20 July the DWP published its long-promised Health and Disability Green Paper consultation titled “Shaping Future Support”. It considers the options for addressing some “short-to medium-term issues in health and disability benefits”. It also aims to “start a discussion about the opportunities for wider change to deliver on the objectives of the health and disability benefit system”.

Ken Butler, DR UK’s Welfare Rights and Policy Adviser, considers some of the principal proposals of the new Green Paper.

“There are some positives in the Green Paper – but unfortunately these are outweighed by some worrying negatives.” Read more here.

Hundreds of thousands “will plunge into poverty” as Minister rejects UK-wide call to keep Universal Credit uplift

The Work and Pensions Secretary, Dr Thérèse Coffey, has rejected a call by cross-party committees from Westminster, the Northern Ireland Assembly, the Welsh Senedd and the Scottish Parliament.

In a joint letter, sent in July, the cross-party committees had called on the Government to extend the £20 a week increase in the standard allowance of Universal Credit, which is due to end in October and to extend the uplift to legacy benefits.

It means the standard UC rates will go down to £257.33 a month for single claimants aged under 25, or £324.84 a month for single claimants over 25.

Read more here.

Broken benefits system forcing thousands of Disabled people to fall behind on payments and skip meals

Thousands of Disabled people on out of work benefits, such as ESA and Jobseeker’s Allowance, are facing considerable mental health and physical challenges as the pandemic has left them struggling financially, new research shows.

The stark findings are from the latest Disability Benefits Consortium’s (DBC) survey.

It was completed by over 1,800 Disabled people in receipt of out of work benefits (also known as ‘legacy benefits’) and findings include:

  • Over two thirds (78%) said their financial situation was ‘worse’ compared to at the start of the pandemic
  • Half (52%) are spending ‘significantly more’ on household bills and utilities than they were before the pandemic, with a third (37%) spending ‘somewhat more’ …

Read more here.

Disabled people’s led organisations absent from Health and Wellbeing Alliance.

Health minister Helen Whately this week announced new appointments to the Health and Wellbeing Alliance, which receives £2m to provide a voice for a range of people with particular interests in health issues.

The Government had previously communicated the withdrawal of funding from the Lived Experience Alliance – which includes Shaping our Lives, Advonet, NSUN and Disability Rights UK. Only NSUN will continue involvement in the Health and Wellbeing Alliance , as part of a mental health coalition.

DR UK chief executive officer Kamran Mallick  said “We had hoped that the Government’s decision to stop funding the Lived Experience Alliance made up of Disabled people’s led organisations was an oversight that they would put right. Clearly we were too generous. Ministers continue to deny disabled people a direct voice at the table during crucial discussions, at a time when Disabled people are experiencing unprecedented barriers in accessing social care and health services.